Medicine 2.0® & eHealth Talks Podcast
By Gunther Eysenbach MD MPH
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Podcast Description
Medicine 2.0® is the annual open, international conference on Web 2.0, social networking and personal health record applications in Medicine, Health, Health Care, and Biomedical Research. The congress is produced and organized by Gunther Eysenbach MD MPH, Associate Professor in Health Policy, Management and Evaluation at the University of Toronto (Canada), Senior Scientist at the Centre for Global eHealth Innovation Toronto, and Editor/Publisher of the Journal of Medical Internet Research, the leading ehealth journal. The congress is co-sponsored by the International Medical Informatics Association (IMIA). Subscribe to this channel to hear talks from past Medicine 2.0 conferences, other eHealth / Health 2.0 events, and interviews with JMIR authors.
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Collaborative Knowledge Translation: Application of a Wiki Model for Primary Care Practitioners | -- | 10/5/09 | Free | View In iTunes |
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PESCA: Developing an Open Source Platform To Bring eHealth To Latin America and the Caribbean | Not available PESCA: Developing an Open Source Platform to Bring eHealth to Latin America and the Caribbean [5 Cr2 1330 Lorca]View SlideShare presentation or Upload your own. (tags: medicine20 20) | 9/4/09 | Free | View In iTunes |
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"Nexthealth" - An Open-Source, Web-Based Tool Determining "What's Next" in the Evolution of Consumer-Centric Care Delivery | Semantic web technology and open source, 'free range' API development provide opportunities to build consumer-centric services beyond current Health 2.0 strata. But the roadmap for true consumer-centric care does not end with semantic web growth - rather it begins there. The authors detail a new planning model, termed 'neXthealth,' giving stakeholders concrete tools to define current positioning and create a map to future goal realization (using existing service lines and development initiatives). We focus on four critical factors needed to realize complete consumer-centric care (aka 'nexthealth'): content + community + commerce + coherence. The authors plot the roadmap to consumer-centric care at the intersection of two rapidly evolving developmental axes: joining patients and professionals in the healthcare conversation, and combining brick-and-mortar real world systems with virtual online services. A case study is used to illustrate the ideal result: completely integrated care delivery where consumers may access healthcare goods and services at will, online or offline. American Well, a Health 2.0 company included in a case study in the presentation, recently validated the nexthealth theory, partnering with Microsoft and the State of Hawaii to deliver the 'online healthcare marketplace' paid for by insurance providers. A live, web-based Flash demo of the neXthealth model will allow Medicine 2.0 attendees to participate in a crowd-sourcing experiment, plotting points on the roadmap to 'nexthealth' and connecting the dots to determine 'what's next' for consumer-centric care, according to the Congress. The authors present not a commercial, one-size-fits all solution to consumer-centric care evolution, but rather a 'killer planning app' - a practical, graphical, open-source tool for executive teams to determine 'what's next' for each organization. In the spirit of crowd-sourcing healthcare evolution, the model will be available free online after launch. Nexthealth presentation at Medicine 2.0View SlideShare presentation or Upload your own. (tags: <a style="text-decoration:underline;"... | 9/4/09 | Free | View In iTunes |
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Usage of Semantic Web Technologies (Web-3.0) Aiming to Facilitate the Utilisation of Computerized Algorithmic Medicine in Clini | Introduction: Despite the proven benefits of algorithmic medicine in healthcare and the plethora of implemented medical algorithms solving Medical Computational Problems (MCPs) which are available on the web [1], their usage is limited in everyday clinical practice. This is mainly due to poor organisation of MCP information, difficulties in MCP search and the missing parameters in the description of medical cases, making their management by a single algorithm rather impossible. In this paper a comprehensive approach to the usage of semantic web technologies (web-3.0) is presented, aiming to facilitate the utilisation of computerized algorithmic medicine in clinical practice. In particular, there are 3 main goals achieved, namely, the semantic descriptions of MCPs, the efficient search of MCPs, and the dynamic semantic composition of a sequence of algorithms managing a certain medical case. Methods: For the Semantic representation of MCP knowledge the MCP OWL Ontology describes the MCPs as a triad: (Medical Problem-Algorithmic Solution-Implementation) Three interacting ontological schemes that refer to each part of the above triad were created. For efficient search, the method used is an adaptation of the classical Vector Space Model (VSM) in MCP Ontology, via which the similarity between MCP semantic descriptions and the user questions is calculated. The weights of MCP vectors are created utilizing the UMLS Ontology [2]. In order to dynamically composite a pathway of algorithms for managing a certain medical case SWLR semantic rules are used. These rules automatically associate different algorithms and construct a Finite State Machine (FSM) of algorithms. The description of a certain medical case via the MCP Ontology by a user constitutes the "language" for that case. If this language is recognised by an FSM of algorithms with the final algorithm that manages the case as the initial state and the algorithm of initiation by the user as the final state, then the sequence of these algorithms can manage the medical case. Results: A modular and expandable, Web-Based Knowledge System (KS) for the MCPs was developed. Preliminary results from its usage showed a more efficient search of MCPs, as well as, a proper management of medical cases through algorithmic pathways proposed by the system which were in agreement with international medical guidelines whenever these were available. Discussion: The developed methods of display and management of MCP knowledge along with the further utilization of the proposed KS are expected to enhance the dissemination and use of algorithmic solutions in everyday medical practice. Simultaneously, medical research and high quality medical education are bound to be benefited at a considerable level. For the dissemination of algorithmic medicine we believe that the future is the combination of web-2.0 and web-3.0 technologies and the transformation of our system to a semantic wiki of MCPs. [1] Iyengar MS, Svirbely JR: Computer-based medical algorithms: overview and experiences. Technol. Health Care 2005, 13(5):403-405 [2] Bratsas C, Koutkias V, Kaimakamis E, Bamidis PD, Pangalos G, Maglaveras N: KnowBaSICS-M: An ontology-based system for semantic management of medical problems and computerised algorithmic solutions. Comput. Meth. Progr. Biomed 2007, 88(1):39-51 <a style="font:14px Helvetica,Arial,Sans-serif;display:block;margin:12px 0 3px 0;text-decoration:underline;" href="http://www.slideshare.net/eysen/usage-of-semantic-web-technologies-web-30-aiming-to-facilitate-the-utilisation-of-computerized-algorithmic-medicine-in-clinical-practice-med2-bratsas-v2-presentation?type=powerpoint" title="Usage of Semantic Web Technologies (Web 3.0) Aiming to Facilitate the Utilisation of Computerized Algorithmic Medicine in Clinical Practice [Med2 Bratsas... | 9/4/09 | Free | View In iTunes |
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Measuring Efficiency of Use in a Web-based EMR Developed for Malawi: Lessons Learned From Performing a Preliminary CogTool Anal | Background: Developing Web-based electronic medical record (EMR) systems is a fundamental step in enabling resource-constrained healthcare environments to benefit from Web 2.0 applications and services. Towards this goal, we have developed and implemented a Web-based EMR in Malawi, Africa. The EMR, built using Ruby on Rails and AJAX, features touchscreen workstations that collect and validate data from the clinician in real-time at the point of care. The system is deployed in high patient burden HIV/AIDS clinics that have frequent staff turnover. This context makes two aspects of system usability - learnability and efficiency of use[1] - important design considerations. Objective: To determine how efficiently novice users complete tasks using the touchscreen interface of the EMR. Methods: To predict how quickly a user could be expected to perform the EMR tasks, we used an established technique for predicting skilled performance time called the Keystroke-Level-Model (KLM)[2]. This technique models the low-level perceptual motor operators required to complete a specified task using a given interface. KLM calculations require the application of a significant amount of cognitive modeling information. However, a free software application called CogTool[3] has been developed to support cognitive modeling for KLM. In the first phase of our research, we selected thirty-one routinely performed EMR tasks and conducted a KLM analysis of the tasks using CogTool. The interfaces and user actions for each task were prepared within CogTool using a storyboard approach. CogTool analyzed the storyboards to predict performance time of a skilled user (i.e., one who performs without error or hestitation). In the second phase, we recruited four volunteers who had not previously used the EMR to complete the thirty-one tasks for three mock patient encounters (resulting in 372 task observations). We collected the task performance data by modifying the EMR to collect timestamp data for all interface events. In the third phase we compared the preliminary novice performance data with the CogTool predictions. Results: Of the 372 EMR tasks, 77% (286) were performed without errors by the novices (errors defined as any deviation from the CogTool storyboard). Of these error-free tasks, the performance time for 68% (194) was faster than the CogTool prediction. We observed two unexpected user behaviors not captured by the initial CogTool models: (1) two-handed touchscreen interface use, and (2) prolonged dialogue during patient interaction (e.g. spelling verifications). Conclusions: Although preliminary in nature, our initial data suggests that novices can sometimes achieve the efficiency level of a skilled user of the EMR. We found CogTool to be an effective software application that permitted us to rapidly develop predictions of skilled performance time. The ability of most novices to often outperform the KLM calculations was likely related to a documented weakness in CogTool regarding the insertion of "think steps" for all touch typing. In our case, for onscreen typing tasks, CogTool inserted "think steps" before each button press. However, upon review it was not possible to identify suggested inclusion criteria for all of these "think steps" [4]. We are currently revising the CogTool models before collecting additional empirical data. References 1. Nielsen J. Usability Engineering. 1st edition. New York: Morgan Kaufman; 1993. 2. Card SK, Moran TP, Newell A. The Keystroke-Level Model for User Performance Time with Interactive Systems. Commun ACM. 1980 Jul;23(7):396-410. 3. John BE, et al. (2006). The CogTool Project. http://www.cs.cmu.edu/~bej/cogtool/index.html. Archived at: http://www.webcitation.org/5Xayftaav 4. Kieras D. (2001). Using the Keystroke-Level Model to Estimate Execution Times. ftp://www.eecs.umich.edu/people/kieras/GOMS/KLM.pdf <div style="width:425px;text-align:left"... | 9/4/09 | Free | View In iTunes |
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User-centered Design of a PHR: Traditional Web Forms vs. Wizard Forms | Background: This work is part of an ongoing feasibility study aimed to design and deploy a PHR system for the citizens of the Province of Trento (NE Italy). The system is intended both to support storing health information important to patients and to improve relationships and communication between patients and their health care providers. With regard to the first topic, input data forms and navigation are crucial elements that would be used consistently in order not to compromise the use of the system. That's why considerable effort was dedicated to guide and support the management of health information in the system design phase. We adopted a citizen-centered approach within an iterative design-evaluation process. This work is supported by the Department of Health and the Department of Research and Innovation of the Autonomous Province of Trento (NE Italy). Objective: Our objective was to explore the effectiveness of the traditional web forms vs. wizard step-by-step structure and to gather information about problems that users may encounter when interacting with such interfaces. We focused on testing usability and user experience of two user interfaces within an interaction design approach [1]. The two prototypes were designed and developed to support citizens to maintain drugs' information themselves. Methods: An early evaluation by health researchers working in FBK was performed. In a second time interaction design methods were used for comparing the two user interfaces. We adopted a usability testing based on the think-aloud technique for observing users while surfing the system and filling the forms, post-task questionnaire based on a Likert-type scale for assessing user satisfaction, and debriefing semi-structure interview for exploring subjective user ex-perience behind what was previously observed [2]. According to Nielsen [3], eight participants were recruited among the administrative personnel of FBK. The inclusion criterion was the skill in using the web. The used task scenarios were stories of common drug prescription. Results: The first evaluation identified mainly navigation problems from screen to screen. A brainstorming with the health researchers allows us to reorganize internal navigation according to the critiques. The usability testing was carried out on the refined user interfaces. Think-aloud reports were transcribed in a world processing file and a content analysis was performed using coding categories described in literature about human-computer-interaction [2]. The most frequent problems were related to the selection of malaises and diagnoses from the related lists. These lists were difficult to use since they were based on large medical terms organized in apparatus. The other issues were about navigation: the button for adding a new prescription in the main page need to be more highlighted and the tab label for editing personal evaluation should be reworded for clarity. Conclusions: Repeated cycles of design-testing-measure-redesign allow pointing out wrong design assumption that could cause usability problems later. No one system prevailed against the other and the incidental preference coming from the debriefing interview was founded on subjective impressions. It could be interested to repeat this test after people have used the wizard interface for a period of time. References: 1. Preece, J. Roger, Y. and Sharp, H. Interaction design: beyond human-computer interaction. New York, John Wiley & Sons, Inc. 2. Kushniruk, Andre W. and Patel Vimla L. Cognitive and usability engineering methods for the evaluation of clinical information systems. Journal of Biomedical Informatics, 37, 56-76, 2004 3. Nielsen, J. Usability engineering. Academic Press, San Diego, CA, 1993 <a style="font:14px Helvetica,Arial,Sans-serif;display:block;margin:12px 0 3px 0;text-decoration:underline;"... | 9/4/09 | Free | View In iTunes |
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InfoWell Patient Portal: A Case of Patient-Centred Design | Objectives There is still much to understand about the benefits of Patient Portals and patient access to their electronic health record. Specifically usability best practices for their design and development and insight into what patients really want to see in a Patient Portal. The InfoWell Patient Portal is a tool designed to assist patients in the management of a chronic condition by providing education, and improving access, support, and navigation through the continuum of care. The objective of the usability component of the InfoWell Patient Portal project is to engage patients throughout the design and development phase to ensure the final end product meets user needs in terms of content and tools, and is easy to use in order to encourage user adoption. Context/Situation The InfoWell Patient Portal represents the largest comprehensive personalized health information website in the province that spans the continuum of care. The SIMS Partnership, the information management and technology (IM/IT) group shared between thirteen health care organizations in the Greater Toronto Area, has led its development. The InfoWell Patient Portal was developed in response to the demand for greater access to health information for patients. Breast cancer, diabetes, and chronic kidney disease patients were chosen in particular due to the perceived benefits of being more educated, informed, and proactive, enabling self-management and ultimately resulting in improved health outcomes, for these particular groups. Method The InfoWell Patient Portal utilized a user-centred design (UCD) methodology to gather requirements, insight, and feedback from patients. This provided health care and IT professionals, and researchers an enlightened perspective as to what patients really want. The requirements gathering process involved an ethnographic approach of using patient interviews and surveys. Patients helped to improve content organization, navigation, menus, and taxonomy of the website through a "Card Sorting Method". Several stages of iterative user testing were conducted to determine the ease of use of the website and to collect suggestions on future tools and functionality for the portal. Benefits Involving end-users in the design and development of the InfoWell Patient Portal help to ensure that 1) The content and tools are useful and meet the needs of patients, 2) The website is intuitive and easy-to-use in terms of design and navigation, thereby increasing the likelihood of widespread adoption by end-users. Results Results of usability testing were incorporated into the iterative design cycle for the Patient Portal and resulted in continual improvement in terms of ease of use with regards to navigation, content groupings and labels, with potential for scalability of disease groups and additional partner organizations. In particular, the card sorting exercise significantly improved the content organization of the website to better correspond to patient expectations. While it is important to engage patients in the requirements gathering phase, it has proven essential to directly observe patients' interaction with the website and tools through iterative usability testing in order identify any disconnects between the goals of health care organizations for the portal, and those of the patient. InfoWell Patient Portal: A Case of Patient-Centred Design [05 Cr2 1100 Chan]<object style="margin:0px"... | 9/4/09 | Free | View In iTunes |
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Virtual Health Platform | The interoperability of Electronic Medical Records is a worldwide problem difficult to solve and with lots of resources involved and working on it. There are some standards to interchange information that are being implemented and good advances have been made. But the reality is that the clinical information is poorly shared in regions and countries and even less between countries. That means that a citizen that moves between countries has no guarantee that, if something happens and medical service in requiered, the clinicians have the right information to treat the patient. At a european level the problem is adding the fact that the european citizens have the right to have health services at any european contry. The multilingual problem, poor interoperability implementation technology makes the solution difficult to achieve. For that reason the EU is funding projects through the FP7 that pretend to achieve the "Health without barriers". In the context os the Innovative European Program (FEDER 2000-2006) a Balearic Islands (Spain) consortium has defined and implemented a project that pretends to provide a solution for Electronic Patient Record Interoperability between european countries. Such a project has been evaluated in the Medical Tourism environment, dinamic sector happy to provide high level service to tourists. The implemented solution (Virtual Health Platform) consists on a basic interoperable platform with this characteristics: - A personal health record with the basic and resumen relevant clinical information from the patient (diagnosis, medication, allergies) but codified with SNOMED a worldwide multilanguage medical standard terminology. - A virtual asyncronous teleconsultation solution that allows referral physician to ask for a second opinion or to referer a patient. It allows to add interconsultation information plus images and videos in Dicom Format (also for interoperability reasons) - The interoperable platform allows to send and receive HL7 messages - The platform is integrated with a USB Devices and allows to store the medical data into a secure USB bracelete. The platform allows to cover the workflow: 1. the patient that is going to travel can store some critical data on the Virtual Health Platform. If travelling because of a medical tourism process can also perform a teleconsultation and send some presurgery information or images. 2. The source health center received the information and can manage the teleconsultation and schedule the patient. 3. To treat the patient the physicians can access to the personal health record and get the information into a local language (SNOMED performs the translation). 4. If there is an emergency or connection problem the information can be reviewed trought the usb bracelete. 5. when the patient has already been treated and has to go back home (other country) the information is stored in the personal health record platform. The Virtual Health Platform acts as Medical Record Gateway allowing access to information between countries, translating the clinical content and integration with other information systems. As a result of the project there are two outpus: - the virtual health platform - a paralel study of medical tourism business cases and requirements The project is one more step in the interoperability problem that europe is trying to reach. To focus in a very dinamic sector like tourism has been good to achieve concrete results fast. The standard terminology SNOMED has helped to get translation and to better organise the medical record. Standards are necessary. <a style="font:14px Helvetica,Arial,Sans-serif;display:block;margin:12px 0 3px 0;text-decoration:underline;" href="http://www.slideshare.net/eysen/virtual-health-platform-05-cr2-cabrer-platform-presentation?type=powerpoint" title="Virtual Health... | 9/4/09 | Free | View In iTunes |
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MyOpenCare: Multicontent treatment paths to share medical knowledge and experience | MyOpenCare enables users to manage the creation and sharing of treatment plans and/or approaches in combination with the system's multimedia content. Once the "thread" has been created, the user will then be able to edit the content, i.e. with the inclusion or deletion of text or image. The user will manage his or her content according to a graph-based structure. This information will then branch out according to the user's choices. The creation of personal H-Books is a feature available to every user. It is designed for medical professionals interested in contributing content in exchange for increased visibility.Using MyOpenCare health professionals will be able to manage the creation and distribution of treatment and/or formative paths, which will be paths created combining the multimedia content in the system, aimed towards the production of different threads. On the nodes and edges of the path users will be able to include descriptive texts or short in-depth examinations. The user will travel along graph-based structures: on certain nodes the path will fork into two or more edges depending on the users' choices (i.e.. slightly different symptoms lead to different pathologies, or there can be multiple suggested cures) MyOpenCare: Multicontent treatment paths to share medical knowledge and experience [5 Cr2 900 Narduzzi]View SlideShare presentation or Upload your own. (tags: medicine20 20) | 9/4/09 | Free | View In iTunes |
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Representing and Processing Dynamic Healthcare Workflow | Healthcare workflows are complex and highly variable. Healthcare workflow execution can be affected by any participant in a process, including clinicians, the patient, and the patient's family, as well as environmental factors such as clinician, staff, facility and equipment availability, and patient clinical status. Attempts to document healthcare workflows result in highly detailed descriptions (often incomplete) with many possible pathways to achieve the goals. A variety of graphical methods and languages have emerged to support the documentation of workflow and computer-based execution. However, only a few solutions exist that enable workflow to address the full complexity and variability of healthcare processes. We have re-conceptualized workflow and developed a new workflow representation and execution framework based on software engineering, inference engine, and database concepts, which has freed workflow representation from the constraints of past methods. We have reported our work on context-aware workflow in a separate paper. Although much has been done on the representation of workflow in business settings, the representation of workflow in highly dynamic settings is still a focus of research. Complex dynamic environments are characteristic of healthcare. They typically involve considerable human interaction resulting in a high degree of variability in scenario outcome. Healthcare settings have many decision makers, kinds of decisions, events and a multitude of reactive, subsidiary workflows that often require a quick revision of the course of action (See Table 1). Operational and treatment protocols attempt to regularize workflow, but the needs of care, the great variety of situations and individuals, the exigencies of the moment (such as equipment failure), and the nature of human beings frustrate attempts at regularization, often resulting in protocols being labeled as "rigid" and hence being abandoned. While event sequences in healthcare processes may abide by loose constraints, they are largely non-deterministic. Therefore, it is difficult, if not impossible, to prescribe fully healthcare workflow. Instead, workflow must be dynamic, self-adapting and evolving at execution-time to match the dynamicity of the environment. Traditional workflow technology by its very static nature supports a finite set of scenarios. In fact, traditional workflow is understood to support, at best, the union of atomic workflow patterns described by van der Aalst1. Available workflow platforms that support these patterns are often incomplete, unsatisfactory, or even non-existent. In fact, no single commercial product supports all listed patterns.1 We have developed a new way of representing healthcare processes that is able to address human-machine interaction and complexity. It converges service oriented architectures concepts with decision support techniques. | 9/4/09 | Free | View In iTunes |
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RNAO eChampion Program | Key objective: 1. To describe an eHealth champion program and its early outcomes related to supporting eHealth adoption among nurses in health care settings 2. To outline key elements of a successful eHealth champion program (lessons learned) to support eHealth adoption among nurses As part of the Nursing and eHealth Project, funded by the Ontario Ministry of Health and Long Term Care, the Registered Nurses' Association of Ontario (RNAO), developed an eHealth Champion Program. This program was modeled after the highly successful RNAO Best Practice Guideline Champion Program, now widely utilized in Ontario to support successful implementation of evidence based practice. The goal of the eHealth Champion Program is to support understanding, acceptance and adoption of informatics in point of care activities for nurses and other members of the health team and to raise awareness among nurses about eHealth and its link to quality patient care and the nursing role, and to support nurses in eHealth adoption across all health care sectors. The eHealth Champion Program consists of close to 300 nurses from all sectors and across all regions of the province of Ontario, and continues to grow. Champions are promoted by their organizations to attend workshops that are held across Ontario to prepare them with eHealth knowledge, and change strategies and processes to assist with eHealth adoption among nurses. As part of the workshop, participants receive an eHealth resource kit which includes readings, tools that helps participants determine and assess their organization's eHealth strategies, practice tools to facilitate websites, and a list of literature reference. At the end of the workshop, all participants are presented with an eHealth champion certificate. In their role as eHealth Champions, they promote nursing's involvement in eHealth for quality patient care in a variety of ways: seeking, creating and coordinating opportunity for nursing's involvement; mentoring others to promote and support knowledge transfer; proving operational support for eHealth integration within their organization; and being an eHealth resource to their organization and/ or local region. Ongoing network meetings of eChampions are held every three months to maintain communication linkages and an opportunity to discuss successes and barriers to eHealth awareness, education and adoption; learn about strategies to promote awareness and adoption of eHealth in the workplace and update their knowledge about eHealth and informatics in nursing and health care. The Nursing eHealth Champions are also a key resource to contribute to eHealth content and policy development that affects nurses and patients. The eChampion Network provides a great opportunity for building varies networks or knowledge transfer amongst eChampions across organizations and in all health care sectors. This presentation will focus on the recruitment and preparation of eHealth Champions, an outline of the key components of the champion preparation workshop, a profile of the eHealth champion cohort to date, and early outcomes of this strategy to support eHealth adoption among nurses. Key lessons learned related to development and use of this strategy will also be highlighted in this presentation. RNAO eChampion Program [5 Cr2 900 I.Bajnok]<param name="movie"... | 9/4/09 | Free | View In iTunes |
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Consumers are not Patient(s) | For many years Canadians considered the relationship with their physician as fundamentally different from the relationship they had with other professionals. Indeed, Canadians, like people in most other countries, use a special word - "patient" - to characterize their role in the relationship. This situation is changing, however, with people taking a more active role in looking after their health and treating physicians with less deference than they did in the past. The emergence of the healthcare consumer is not only driving a new class of eHealth applications (sometimes referred to as Personal eHealth or Consumer eHealth applications) but will also have a profound impact on the nature of the applications as well as the choices that individuals make regarding the organizations that offer these applications. In looking after their health and engaging healthcare providers, individuals will alternately act as either a patient or a consumer. In each role individuals will think and act differently and may consequently have a need for a different type of personal eHealth application. While the distinction between patient and consumer may seem somewhat arbitrary and perhaps even artificial, it does help explain why new healthcare intermediaries such as revolution.com, WebMD, and Microsoft are entering the market. As well, this distinction also helps to more easily identify opportunities for healthcare providers to use information and communications technologies to engage their patients. This presentation examines the differences between consumer and patient and explores how these differences must be considered in the design of personal eHealth applications. | 9/4/09 | Free | View In iTunes |
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Patient-Driven Content Creation: Effectively Introducing Wiki Repositories to Virtual Support Communities | Background: Virtual patient communities are an important source of information and social support for many patients (e.g., [1]). Most patient communities use a threaded conversation design such as an email list or discussion forum. This simple design supports highly personalized and empathetic communication [2-3]. In addition, many communities augment their conversations with community repositories (e.g., websites, FAQs) that distill their conversations, help newcomers find their bearings, and promote their community. Wiki platforms provide a new way of creating these community repositories collaboratively [4]. However, because wikis are new to most patient communities it is not clear how to effectively introduce and use them. Objective: To identify challenges of collaborative authoring by a patient support group and effective strategies for overcoming those challenges. Methods: We performed an action research field study of 3 existing online patient groups. We provided each group with a customized wiki and suggestions on how to effectively use it. Suggestions were based on a prior study of a successful technical support community and tailored to the medical context [4]. Data from discussion archives, wiki page histories, and server logs were used to analyze participation patterns and wiki growth. Data from interviews and conversations between community members and the investigators were analyzed using a grounded theory approach, where common themes were identified and contrasted. The evaluation focused on both technical and social issues, similar to other studies implementing novel technologies (e.g., [5]) Results: The three groups varied significantly in the number of contributors and amount of content they created using the wikis, ranging from 1 contributor and a handful of pages (Pain Management) to a dozen contributors and 26 pages (Graves' Disease) to over 70 registered users and over 400 pages (GIST Cancer). Interviews and content analysis identified several challenges in introducing and sustaining the wiki repository. Social challenges included motivating contributions to the wiki, getting community buy-in, the hesitancy of members to edit other members contributions (even when those edits would be beneficial), and reconciling different frameworks for organizing the content. Several strategies helped overcome some of these challenges including: creating a Wiki Team that shared ownership of the wiki and having them seed the wiki with content before introducing it to the community; emphasizing the differences between a wiki and threaded conversation and how they can strengthen each other; and establishing realistic expectations about the temporal pace of activity on the wiki as compared to the discussion forum (i.e., intermittent and bursty wiki participation versus frequent and steady discussions). The most significant technical challenge was learning wiki editing syntax. Although none of the participants had prior wiki editing experience, they all learned to use the wiki with little coaching from the research team. Conclusions: The social challenges of implementing a wiki repository were far greater than the technical challenges, despite contributors' general lack of technical expertise. Further research should validate the successful strategies for overcoming these challenges that were identified in this study and develop novel social and technical strategies for creating patient-driven wiki repositories. References: [1] Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res 2007;9(2):e12. http://www.jmir.org/2007/2/e12/ [2] Galegher J, Sproull L, Kiesler S. Legitimacy, authority, and community in electronic support groups. Written Communication 1998;(15): 493-530. [3] Maloney-Krichmar D, Preece J. A multilevel analysis of sociability, usability, and community dynamics in an online health... | 9/4/09 | Free | View In iTunes |
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Versatile, Immersive, Creative and Dynamic Virtual 3-D Healthcare Learning | -- | 9/4/09 | Free | View In iTunes |
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Where can teens find health information? A survey of web portals designed for teen health information seekers | -- | 9/4/09 | Free | View In iTunes |
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BioTIFF: Articulating Self-Documenting Personal Health Digital Information Artefacts | Although the Web 2.0 world of participatory, web-based collaboration and social networking has just been launched, a Web 3.0 is emerging where ubiquitous data and virally distributed free and open applications for interacting with that data, is leading to new and useful forms of socio-technical articulation. The University of Toronto Laboratory for Collaborative Diagnostics (www.lcd.utoronto.ca) is developing an electronic personal health record (ePHR) system that anticipates Web 3.0. The BioTIFF is a self-documenting digital file structure designed to bind typical ePHR clinical information to digital files that record results of diagnostic tests. It consists of a highly extensible multi-page tagged image file format (TIFF) record in which digital image representations of the results of diagnostic tests can be annotated with richly informative metadata providing the substrate for generating bio-referenced overlay maps useful in interpreting that information. For example, the first digital CT image of a newly diagnosed brain tumor can be entered into an articulated and indexable person-centered digital file envelope containing all of the persons relevant health diagnostic data and metadata as well as pointers to bioinformatic and eHealth information concerning tumors of that type. What is more, this image can act as a navigation beacon and record-anchor for asynchronous communication, info(r)mediation and other forms of transactions within the persons circle of care concerning the tumor. The BioTIFF is inspired by GeoTIFF (www.remotesensing.org/geotiff/geotiff.html) that evolved as an open standard for creating multi-page TIFF relating overlapping maps and images of particular geospatial locations and linking those maps to associated metadata. GeoTIFF exploited the self-documenting properties of geographical coordinate systems to uniquely identify a location within a satellite image and thereby allow cross-referencing to other information artefacts relevant to that location. The BioTIFF approach uses molecular, cellular, anatomical, and biomedical coordinate systems to specify biological inner space domains where biological systems dynamics happen in ways that express themselves as health and disease. These coordinate systems allow mapping of the progression of treatment and of health status in individuals as represented by the continuous stream of results from diagnostic and laboratory tests guiding treatment. This biomedical mapping can be further articulated with socio-technical systems frameworks describing how individuals interact with technologies and places in their healthcare systems. In this way the BioTIFF record can contain all of the information needed to drive interpretive applications aimed at mapping a persons experiences with their treatment. The BioTIFF is not only self-documenting but also enables members of the circle of care, especially the person at the center, to document, reflect, and comment upon opinions and narratives within the circle of care concerning goals, experiences and interpretation of outcomes. This enables a multilateral, dialogical, and person centric approach to negotiating optimized health care trajectories. The BioTIFF has been designed as a distributed and easily scalable and transportable application that is well adapted to emerging commoditized cloud storage and computational infrastructure. In this talk we describe BioTIFF's architecture and design constraints. BioTIFF:... | 9/4/09 | Free | View In iTunes |
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The Construction of Expertise in the Age of the Internet: Psychotropic Drug Knowledge in Consumer-Constructed Online Spaces | By universal definition and consensus, information about psychotropic drugs prescribed and used as medicines rests on a highly specialized knowledge base, long seen as the legitimate if not exclusive province of medical experts. This expert knowledge base has, however, become highly contested, for three main reasons. First, to reach a "valid" understanding of drugs' effects, researchers have persistently muted the direct voice and speech of the patient in favor of a presumably more objective biomedical discourse [1]. Second, the blurring lines between pharmaceutical industry marketing and scientific activities, and the near monopoly of the industry over "scientific" knowledge production on psychotropic drugs has resulted, at a minimum, in serious publication biases and great uncertainty about drug efficacy and safety [2, 3]. Third, intermediaries through which officially legitimated drug information is filtered (including the FDA drug label, psychiatrists, and direct-to-consumer advertising) are losing credibility and relevance. In parallel, the Internet now allows researchers, clinicians, and consumers to review drug experiences and information from thousands of consumers without professional mediation, and presumably without pharmaceutical industry supervision over content. How these web-based sources contribute to or dilute the expert/scientific knowledge base, or how they constitute their own knowledge base, remains virtually unexplored. Moreover, pharmaceutical companies looking for new opportunities to influence consumer behavior are keenly aware of the power of consumer forums to build trust, offer support, and encourage behavior [4]. This presentation will also review the possible extent and implications of drug representative infiltration into online consumer spaces. Finally, "democratizing" the production of knowledge and consumers' broadened acceptance of what constitutes legitimate, trustworthy, or credible information results in a trans-disciplinary debate about the appropriate role of experts and non-experts in policy, media, science, and culture, as well as the true nature of what is being applauded as "democratization" [5]. Applied to the construction of knowledge about psychotropic drugs, the debate may be summarized by the following questions: Are increased pluralism and democracy in drug knowledge production and decision-making, along with increased transparency of such processes, the best means to build a knowledge base continually evolving toward the ideal of being "fully informed"? Or might they actually hinder both experts' and laypersons' understanding of the genuine effects of drugs, by diluting the knowledge base with ill-considered contributions? Answers to these questions will have broad implications for the future of clinical research methods, post-marketing drug surveillance, and treatment decision-makers (clinicians, third-party payers, and potential and actual consumers). This presentation will review inadequacies in how scientific methods are applied in drug research to construct official drug knowledge, opportunities for knowledge construction within consumer-constructed online spaces, and emerging questions related to the authenticity and credibility of peer-produced, often anonymous contributions. References 1. Jacobs D, Cohen D. What is really known about psychological alterations produced by psychiatric drugs? Intern J of Risk & Saf in Med 1999;12:37-47. 2. Ioannidis I, Lau J. Completeness of safety reporting in randomized trials: An evaluation of 7 medical areas. JAMA 2001;285:437-443. 3. Melander H, Ahlqvist-Rastad J, Meijer G, Beermann B. Evidence-b(i)ased medicine - selective reporting from studies sponsored by pharmaceutical industry: Review of studies in new drug applications. Br Med J 2003;326:1171-1173. 4. O'Neill A. The patient trust deficit in pharmaceutical marketing. DTC... | 9/4/09 | Free | View In iTunes |
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Not every site needs a wiki: A conceptual framework for health Websites | Introduction In the early days of the World Wide Web, a Website was a Website was a Website. Sites facilitated information exchange in the form of text, images and hyperlinks and, for the most part, differed from each other only in content and aesthetic design features [1]. As the Web and its associated technology evolved, exchanges became more complex, incorporating new functions such as commerce, which enabled users to purchase items or services via the Web, and new features such as guest books, which allowed readers to comment directly on Websites authored by others. This increase in interactivity continued, and there are now many different classes of Web-based applications, each with its own focus and key functions. Choosing which applications and technologies to incorporate in health Websites requires an understanding of one's goals and of how different Web-based tools might help achieve such goals. Similarly, analyzing existing Websites requires an understanding of fundamental differences in focus between different applications [2]. Methods In this work, we drew on literature from Human-Computer Interaction, Sociology, Human Behaviour and eHealth to develop a conceptual framework for Web-based applications and technologies within which to consider and balance potentially competing goals and priorities. We explore these concepts through a framework with two pillars: 1) Community and 2) Information (Re)Organization that shape a structure of attributes, each with technical, design, social and human aspects. Results 1) Community: a) Individuals and Identity: What are the characteristics and roles of individuals in the community? How is identity constructed? What options are available for depicting identity? b) Connections: What role do connections between individuals have in the application? How are connections made and represented? c) Authorship: Who authors information in this application? How is authorship depicted? d) Authority: What are the formal and informal structures of authority in the community? How do these reflect, reproduce, support, or provide alternatives to existing power structures? e) Dialogue and Dissent: How is dialogue represented in the application? (How) is dissent addressed? f) Collaboration: How does the application support collaboration amongst community members? 2) Information (Re)Organization a) Information (Input): What are the characteristics of the content input to this application? E.g. Is the content textual or numerical? Scientific or lay? Does it convey specific experiential knowledge or generalized knowledge? Is it detailed or vague? b) Organization (Presentation): How is the content of this application presented? E.g. Are there tables or graphs? Images, audio, or video? What is the general layout? Is it multi-platform? c) Reorganization (Output): What are the characteristics of the content output from this application? E.g. Is it aggregated or mashed up from a variety of sources? Discussion We propose a theoretical model describing the relationships between the attributes, situate existing and upcoming Web-based eHealth applications within the framework, and highlight the implications of this framework for eHealth researchers and health Website designers. References 1. Berners-Lee T. Weaving the Web: The Original Design and Ultimate Destiny of the World Wide Web. New York, NY: Harper Collins; 2000. 2. Weiss JB, Campion TR. Blogs, Wikis, and Discussion Forums: Attributes and Implications for Clinical Information Systems. MEDINFO 2007 - Proceedings of the 12th World Congress on Health (Medical) Informatics: Building Sustainable Health Systems. Brisbane, Australia: IOS Press; 2007;12(Pt 1):157-161. <a style="font:14px Helvetica,Arial,Sans-serif;display:block;margin:12px 0 3px 0;text-decoration:underline;"... | 9/4/09 | Free | View In iTunes |
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Hesitative Introduction of E-mail consultations in General Practice | Introduction The Dutch Council for Public Health and Health Care reported in 2005 that 70% of internet users would want to have the opportunity to consult their own general practitioner by e-mail [1]. Since January 1, 2006, general practitioners in the Netherlands are reimbursed 4.50 euro for e-mail consultations, on the condition that it does not concern a new health problem and that it substitutes for a normal practice consultation. In this presentation we will investigate how many doctors and patients actually use e-mail consultations; whether the health problems presented in e-consultations differ from normal practice consultations; and to what extent patients who use e-consultations are different in terms of, age, gender and frequency of use of GP services. Methods Data are derived from routine electronic medical records of 100 GP practices that participate in the Netherlands Information Network of General Practice (LINH) [2]. The dataset comprises all 1.902.902 contacts of all 271.509 patients listed in these practices in 2006. For each contact the dataset holds information on type of contact; patient age and gender, prescribed drugs, referrals, as well as diagnosis information. Diagnoses are recorded using the International Classification of Primary Care (ICPC) coding system. Results E-mail consultations were claimed at least once in about 30% of the practices involved. Health centers were overrepresented as compared with single handed practices. In most practices the number of consulations was less than 25 in the whole study period, but there were also some enthousiasts: three practices were responsible for almost 50% of all 1159 e-consultations that were claimed. These consultations pertained to 777 patients. For most patients (74%) an e-mail consultation was claimed only once. Taking into account the fact that women use more GP services in general, more men than women were users of e-consultations. Among users of of e-mail consultations people aged 25 - 44 years are overrepresented. In a relatively large number of e-mail consultations (73%) no diagnosis was recorded. Where this information was available, metabolic diseases such as diabetes, pregnancy etc and diseases/complaints of the male reproductive system were recorded more often than in normal practice consultations. Cardiovascular problems and respiratory problems seemed to be less suitable for e-mail consultations. Among users of e-mail consultations, the contactfrequency for the GP is 65% higher than among other people who consulted their GP in the study period. Relatively many users of e-consultations, had a normal consultation in the days before and after the e-consultation. Conclusion Though many people seem to be interested in e-consultations, still very few are people using it. In relative terms, e-mail consultations are used more often by men than women and by people aged 25-44. The fact that e-consultations are more often used by frequent attenders suggests that e-consultations are a particularly interesting option for those who have a close relation with their GP. Additional results for 2007 will be presented at the conference. [1] AJG Van der Rijen. Internetgebruiker en Veranderingen in de Zorg. Zoetermeer, Raad voor de Volksgezondheid en Zorg, 2005. [2] Verheij RA, et al. Netherlands Information Network of General Practice. NIVEL/WOK. 2008-05-02. URL:http://www.nivel.nl/linh/. Accessed: 2008-05-02. (Archived by WebCite® at http://www.webcitation.org/5XVf8Yx9M) <a style="font:14px Helvetica,Arial,Sans-serif;display:block;margin:12px 0 3px 0;text-decoration:underline;" href="http://www.slideshare.net/eysen/email-consultations-in-general-practice-in-the-netherlands-4-cr2-1100-verheij-presentation?type=powerpoint" title="E-mail consultations in general practice in the Netherlands [4 Cr2 1100... | 9/4/09 | Free | View In iTunes |
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The potential of social computing for biomedical research on rare diseases | Subject: Results of our ongoing Study on the Potential of Social Computing for Biomedical Research in Rare Diseases. Rationale of our study: Rare Diseases (RDs) affect 6-8 % of the European population, approximately 25 million citizens. There exist between 5000 and 8000 RDs of which 80 % have a genetic origin. Because of their rarity, these diseases are hardly observed in basic diagnostic procedures and pathways by clinicians, resulting in under-diagnosing and/or on longer waiting periods needed to get the correct. Research on rare diseases (RDs) has traditionally been hindered by the fact that cases, clinicians, researchers and resources (pharmaceutical companies have lacked return on investment) are scattered. One of the key characteristics of social computing is its ability to enable powerfully user-created content. Social Computing, also known as the Web 2.0 has the potential to connect up all the actors and stakeholders, especially patients and biomedical researchers. These activities and networks are already allowing a critical mass of knowledge to be gathered, from both patients and researchers - albeit in an unstructured manner. Objectives: To assess the capability of social networks to enable sustainable research on rare diseases, by allowing patients to be knowledge generators, in synergy with biomedical researchers, and to propose a structured construct to dramatically increase this synergy. Specific objectives of our research include: a) the assessment of opportunities and challenges of social networks for research, from the point of view of patients, formal and informal carers, clinicians, researchers, industry and society; b) a proposal for a construct to structuring and making efficient this potential; c) the derivation of policy options at EU level as to develop this construct; d) the analysis of relevant implications for privacy and security of social computing related activities in this realm. Applied method: We have applied a 3-step methodology: 1) Browsing current experiences (there are scarce but there are some examples, e.g. Autism: IAN Project http://www.ianproject.org/ and OAR http://www.researchautism.org/); while specifically checking the relevant social computing-based applications, if any. 2) Holding an expert workshop to ascertain the opportunities and challenges; and 3) proposing a structure for this construct, partly based on Science 2.0 theories and also on some practical cases. Preliminary conclusions: Though RDs affect only 6-8% of European citizens, Information Society Technologies platforms using social computing approaches have a considerable potential for research on RDs, not only as regards its sustainability but also its profitability for both the pharmaceutical industry and the society at large. The body of knowledge on RDs has developed very slowly and is still largely an "uncharted territory". Based on the "Long Tail" theory [1], research on specific rare diseases through the application of social computing is worth - socially, clinically and economically. Cases examined preliminarily confirm our hypothesis. An international expert consultation will serve to systematise and validate our insights so far. References: 1. Anderson, Chris. The Long Tail - Why the Future of Business is Selling Less of More. Hyperion, New York. 2006. 2. RDCRN - Rare Diseases Clinical Research Network. http://rarediseasesnetwork.epi.usf.edu/ 3. Sauer I, Bialeck D, Efimova E, Schwartlander R, Pless G & Neuhaus P. "Blogs" and "Wikis" are valuable software tools for communication within research groups. Artificial Organs 29(1):82-89, Blackwell Publishing, Inc. 2005. 4. Singer, E. Social Networking Hits the Genome. http://www.technologyreview.com/Biotech /20464/ 5. Waldrop, M. Science 2.0 - Is Open Access Science the Future? Scientific American Magazine - April 21, 2008. (Also available at http://www.sciam.com/article.cfm?id=science-2-point-0).... | 8/27/09 | Free | View In iTunes |
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Risk 2.0: The future of connected health (Panel) | Over the past decade the Internet has radically changed the dynamics of health, bringing not only new ways of providing information and care for individuals, but also for communicating and managing health matters on a global basis. New applications, services and access to information have permanently altered the relationships between consumers, health professionals, industry and governments - and there are more changes yet to come with Health 2.0. One of the tenets of Health 2.0 is choice, where consumers take a more active role in their health. Despite the proliferation of wikis, blogs and a host of websites dedicated to their particular concerns, nevertheless there remains an inherent information asymmetry between health care providers and consumers. Bridging these differences presents enormous challenges and goes beyond simply providing tools for consumers, towards facilitating their effective use for improving health outcomes. As significant and well-publicized incidents have shown, there is increasing public pressure on professionals, as well as on national and local systems to better manage the consequences of the online world. These pressures arise in part from the public's perception of risk, such as theft or disclosure of personal health records or vulnerability to fraud and misinformation, to cite several examples. This panel draws on research and expertise in new technologies, health communication and international public health to explore the public's understanding and perception of quality, evidence and risk. Using an audience response system to facilitate discussion, participants will highlight real and perceived dangers of online health and the implications for the sector. Together the panel and audience will consider the role of consumers, health professionals, industry and governments in facing the challenges of the next decade as the technologies evolve and as our ability to understand, prevent and manage risk improves. | 8/27/09 | Free | View In iTunes |
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To 2.0 or not to 2.0 - have junior doctors already answered the question? | -- | 8/27/09 | Free | View In iTunes |
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Mobile Medicine 2.0 | Introduction A new generation of smartphones is enabling high speed internet access via the mobile web browser. In this paper, we examine the unique aspects of using social media applications on mobile platforms and suggest potential uses for medical practice. Personal Digital Assistants (PDAs) have long been used by clinicians as reference tools(1) and simple patient databases. Recent advances in mobile phone and PDA technology have allowed for high speed access to social media web applications such as social networks, blogs and wikis. Methods We performed a literature review and conducted technical evaluations of current social media applications designed for access on mobile platforms. In particular we examined how these applications could be used in medical practice and identified cases where health professionals have utilised mobile access to social media applications. We also performed evaluations of smartphone devices and identified the key technologies that are enabling high-speed web access on mobile devices. Results Most major social media applications now have specially formatted mobile versions. Recent developments in mobile hardware include 3rd Generation (3G) high speed internet access, multi-touch displays and high resolution screens. The technologies combine to offer an improved web browsing experience that enable the use of more advanced types of website such as social networks, blogs and wikis. Although there is a paucity of available research into how these mobile social media applications can be applied to medicine, there appears to be some evidence that they could be useful for patients and clinicians. Some applications, such as micro-blogging(2), appear to be more suited to mobile use than others and may have more potential for use in healthcare. Discussion We propose a number of medical uses for popular mobile social media applications and examine the unique technologies and methodologies that differentiate these tools from legacy mobile technology such as bleeper systems and non-connected personal digital assistant technology. We discuss the possibility for integrating the technology and techniques used by popular consumer social media applications with recent advances in clinical coding and communication standards such as SNOMED CT and HL7. As mobile access to the electronic health records become more common, so too will mobile access to medical social media applications to support the evidence based practice of medicine. References 1. Baumgart DC. Personal digital assistants in health care: experienced clinicians in the palm of your hand?. Lancet. 366(9492):1210-22, 2005 Oct 1. 2. Ginzberg U. Twitter: applications for the health 2.0 world. Retireved May 2 2008 from http://blog.medical20.com/2007/06/twitter-applications-for-health-20.html | 8/27/09 | Free | View In iTunes |
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MDPIXX: The Global Medical Images Repository | MDPIXX (http://mdpixx.com) is a multi-media portal for clinical cases, medical images and videos - a convenient way to upload and share medical images and associated information. Physicians, researchers and educators can use MDPIXX within their institution or collaborate and interact with colleagues anywhere in the world for clinical, research, teaching and decision support purposes. MDPIXX is free and exclusively for physicians. MDPIXX can be used for images management, collaboration and sharing purposes, organize clinical cases from an organization, store physicians medical images, second opinion, telemedicine, teaching purposes and decision support. SNOMED CT for Terminology MDPIXX allows to organize medical media like images and videos. Also, Clinical Cases can be created with a title and description. All the resources and cases use the keywords system to categorize the content. Keywords are based on SNOMED CT Terminology which allows MDPIXX to index cases and images, relate clinical information, link to external sources and perform automatic translation of the keywords depending on the user default language selection. SNOMED provides a battery of more than one million clinical terms. Powerful video management MDPIXX allows to manage big videos and images. Big videos can be uploaded to MDPIXX and will be coded correctly to be seen and broadcasted on the internet. Vote, comment and share MDPIXX is a web 2.0 site so a social community is going to manage and control the content. Cases, images and videos are valued by the MDPIXX users, commented and shared with other users. White Label MDPIXX: use a personalized MDPIXX for your organization MDPIXX is happy to partner with hospitals or medical centers that want to use MDPIXX. MDPIXX can be used as white label product. The mash-up embedded technology allows health organizations to use MDPIXX personalized and privately only for the organization community or workgroup. So any Telemedicine network or health organization can have their MDPIXX space with their own logo, users and content. You can also embed MDPIXX related cases and content into your intranet site or Electronic Medical Record application. Some partners have already established a relationship with MDPIXX to define a worldwide private telemedicine network, second opinion businesses, research institutes, special illness repository, health support to non developed countries, etc. | 8/27/09 | Free | View In iTunes |
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Facilitating Online Collaboration and Communication: A Groups Approach | OntarioMD Groups (www.ontariomd.ca/groups) is an online collaboration tool designed to facilitate communication and workflow among physicians and other healthcare professionals. By providing an external web presence and a private intranet suite of tools, OntarioMD Groups is a versatile way to plan events, share documents, and engage in discussion with peers. The OntarioMD Groups project is the first iteration in a fully user-driven communication and collaboration platform. The project is currently being piloted with a diverse population of both clinical and non-clinical users. The presentation will focus on the development of the project, results of the pilot and future plans. References OntarioMD Groups homepage. URL: http://www.ontariomd.ca/group Facilitating Online Collaboration and Communication: A Groups Approach [5 Cr3 1100 Seto]View SlideShare presentation or Upload your own. (tags: 20 medicine) | 8/27/09 | Free | View In iTunes |
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Creating and Supporting a Community of Practice | Aims: We have investigated the nature of a Community of Practice (CoP), particularly as applied to healthcare and health research teams. Our objectives are to define frameworks for collaboration and provide information systems support for collaborative teams. Although the "CoP" term is widely used, it appears to be minimally understood, as is how to realize and support CoPs. Methods: Our work has involved three thrusts: (1) to understand the literature on the CoP concept and experience with its application, (2) to convene a Ministry of Research and Innovation workshop featuring progenitors of the concept together with researchers and other parties, and (3) to analyze in depth the needs of a specific CoP - a team of cancer researchers. Results: A very successful workshop featuring Dr. Etienne Wenger exposed its participants to the nature and realities of CoPs and defined the requirements for facilitating the creation of CoPs. The video archive of this workshop has been made available on the Web. The study of the needs of cancer researchers resulted in two key reports, one on the nature of a researcher CoP and its required technological underpinnings, and one on the concept of operations of a CoP-support system. Conclusions: We all seem to realize the value of the CoP idea, but few have delivered practical, usable tools that help to assemble a CoP and support it. Our work provides this basis, and we will present what establishing a CoP requires and how it needs to be supported by information systems. | 8/27/09 | Free | View In iTunes |
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Stop The World wide web I Want To Get Off. | Background Increasing number of patients are using the Internet for health information (National Statistics 2007). Traditionally professionals have been the information gatekeepers; key questions were around what information patients should be given. Reviews of information on the Internet have been focused towards analysing the quality of information e.g. Eysenbach et al [1] and Breckons et a 2008[2] Whilst this debate is important patients do not always want this professional centric world and are quietly seizing the agenda. If the professionals are not giving them the information they want, they are going and finding it for themselves. Neither patients nor professionals however yet understand enough about the new options that the Internet affords to be able to develop a shared understanding of how to make best use of it. Web 1.0 brought debate around the quality of the information made available. Web 2.0 however brings the additional complexity of knowing where the information is before it can be questioned. One weakness of some research into health information on the Internet is that a quite common research method is to carry out searches and then analyse the top results (e.g. Biddle et al[3]), which tends to exclude information from Web 2.0 sites. Objective Healthcare professionals are one of the main sources of information for patients; their knowledge of information sources will affect their ability to support their patients. The objective of this research was to explore professionals' use of the Internet for patient information. Methods A questionnaire was distributed to healthcare professionals attending CPD sessions at an English university. Participation was voluntary, and students assured that this did not affect the session they were attending. The researcher was not involved with the session. Results. In total there were 51 completed the questionnaires. 71% of respondents were nurses. The majority (94%) thought the Internet was a good source of health information. Their use of the Internet was however limited. Most (85%) often used email, far fewer often used instant messaging (29%) or discussion boards (20%). Only 23% reported having an Athens account, the Health Service system for accessing online journals. Few (18%) would usually recommend a website to patients, 33% would never do so. Even less, 8% would usually recommend an online support group, over half (57%) would never do so. Not only were these professionals not recommending the Internet to their patients, they were not using it to locate patient information themselves. Only 16% said they usually used websites that allowed them to create tailored information leaflets for their patients, 32% never using these sites. Conclusion Although these healthcare professionals thought the Internet was a good source of health information this belief was not matched by their actions. Less than one third usually recommended the Internet to their patients, more never did so. Nor were they using the Internet to meet their own information needs. Healthcare professionals education needs to include the Internet as a patient information source so that they are able to advise and support their patients. | 8/27/09 | Free | View In iTunes |
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New Media Medicine: A Social Network for Doctors and Medical Students | New Media Medicine hosts an online Social Network with over 40,000 registered members. The network primarily caters for UK doctors, medical students and pre-med students applying for medical school. Features include a lively discussion forum with over 500,000 posts, and facilities for members to blog, upload photos and create social groups of friends. This presentation describes the tools and techniques required for building a friendly and successful medical social networking community. In particular, we examine online community dynamics, moderation techniques and strategies for growth and sustainability. The presentation discusses how a social network can be used as a basis for an international e-learning community through the use of user-generated content and online peer review and discussion. New Media Medicine: A Social Network for Doctors and MEdical Students [5 Cr3 1100 Paton]View SlideShare presentation or Upload your own. (tags: medicine20 20) | 8/27/09 | Free | View In iTunes |
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Web and mobile solution for support of process of care: case of depression | Introduction: In general practice 12% of patients are suffering from depression, which puts depression on the second place of most common chronic diseases in primary care. Results of DEPRES study have shown that only 1,5 % are properly treated - they are either undiagnosed, receive improper treatment or discontinue treatment and are not followed-up. Several interventions improve outcome of treatment: education of staff, care management, active patient involvement including self-assessment, follow-up with telephone reminders and access of general practitioner to patient progress results. All of these can effectively be joined together using an information system, employing workflow management. A recent study by Robertson et al has shown promising results of an internet based solution to provide several of these functionalities. Methods: to evaluate an integrated care management and patient involvement approach to treatment of depression a web-based information system has been developed, accessible by all actors in care process using computers and mobile phones. The solution enables process support through defining tasks and timelines to all involved actors, automated reminders, communication tool, access to patient data etc. Use of process matrices enables complex evaluation of patients' response to treatment. The effects of the approach in which all involved actors use the application as care support are being evaluated in a case-control study involving general practitioners and patients diagnosed with depression for the first time. A multivariate analysis of factors influencing patient compliance and treatment outcome will be conducted. Results: the research will show which functionalities of the system and related care management or patient empowerment approaches contribute to what extent to depression treatment outcome. Generalised model of defining and structuring the care process and the modalities of the ICT support has been tested. Discussion: information technology supported care management of chronic diseases with focus on active patient involvement and patient empowerment emerges as one of the most promising ways to ensure cost-effective way of treatment. It is in most cases tightly connected to organization change and financing change, To insure sustainability these rather complex financing and organizational issues need to be resolved. | 8/27/09 | Free | View In iTunes |
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Developing of a web-based application to facilitate patient treatment adherence in individuals with sleep apnea treated with Co | Background: Obstructive sleep apnea (OSA) is an increasingly common sleep disorder in individuals whose airways obstruct and become frequently apneic during sleep. Persons diagnosed with OSA are at risk for serious health problems such as hypertension, stroke, and arrhythmias including daytime sleepiness and poor waking cognitive function that increases their risk for motor vehicle and work related accidents [1]. The most common treatment for OSA is the use of a Continuous Positive Airway Pressure (CPAP) device which serves as a pneumatic splint to keep the airway open. Many people have difficulties in adapting to the device, modifying their sleep routine, and thus discontinue the treatment. In a study of experiences of OSA patients in the first three months of CPAP use, researchers followed the patients by questioning and evaluating of the CPAP use which helped the patients understand the often subtle improvements in their symptoms of sleep deprivation which hampered motivation to adhere to treatment [2]. Another study documented the effectiveness of a CPAP support group in sharing difficulties, offering suggestions, and empowering patients to problem solve their difficulties [3] which suggest that social networks introduced in an online application would provide at-home support to improve adherence. Research indicates that education alone does not improve adherence rates; however, instituting cognitive behavioral therapy may be effective [4]. Therefore the chosen approach focuses on improving self efficacy (confidence), evaluation of barriers, and developing behavioral strategies strengthened by social support to improve adherence rates. Objective: The purpose of this paper is to discuss the steps in the development of a web-based interactive application to facilitate patients' adherence to CPAP treatment. The goal of the web- based application is to facilitate adherence by creating a patient-managed tracking system for symptoms and CPAP usage, self-assessment of barriers, motivational interactive questioning, and a resource library including patient success stories. This application will facilitate developing behavioral strategies to promote adherence that can be accessed early in the treatment phase, when risk of non-adherence is high. Method: Application of Self Efficacy theory [5] to interactive web based design. Results: The CPAP motivational application will provide a web-based interactive patient self- management program that will: 1.) Capture user data by collecting self-reported CPAP use survey data; 2.) Track patient progress over time; 3.) Provide automated motivators; 4.) Provide a resource library with motivational success stories; and 5.) patient discussion forum. Conclusions: Use of theory based behavior modification approaches can in integrated into a web based application for future intervention study to test feasibility and efficacy. References: 1. Young T, Peppard P, Gottlieb D. Epidemiology of obstructive sleep apnea. A population health perspective. Am J Respir Crit Care Med 2002; 165:1217-39. 2. Dickerson SS, Akhu-Zaheya L.Longitudinal study of CPAP patients beginning treatment. Rehabil Nurs 2007;.32(6):241-50 3. Dickerson SS, Kennedy M. Seeking encouragement in a support group of individuals with sleep apnea who use continuous positive airway pressure (CPAP) devices. Rehabil Nurs 2006; 31(3),114-122. 4. Haniffa M, Lasserson TJ, Smith I. Interventions to improve compliance with continuous positive airway pressure for obstructive sleep apnoea. Cochrane Database of Systematic Review 2004 Issue 4. Article no CD003531.DOI:10.1002/14651858.CD003431.pub2. 5. Bandura A. Self Efficacy: The exercise of control 1997; NY:W. H. Freeman | 8/27/09 | Free | View In iTunes |
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Using Technology to Engage Patients and Clinicians in Electronic Cancer Symptom Assessment and Management: Lessons Learned and | Many cancer patients struggle with the physical and emotional pain caused by cancer symptoms. Patients and care providers often find it challenging to effectively communicate their symptoms because of minimal use of standardized symptom assessment tools and inconsistent pain and symptom management practices. Paper tools are the norm but they are not accessible to all team members, cannot be viewed across the system unless they are manually entered into a database, and are not easily shared across care settings (e.g. hospitals, home care) or able to show a patient's symptom severity scores over time. The Interactive Symptom Assessment and Collection (ISAAC) tool developed by Cancer Care Ontario (CCO) is an easy-to-use, standardized, secure, electronic tool that allows patients to complete an interactive version of the Edmonton Symptom Assessment System (ESAS) tool 1. ISAAC puts patients in control of their own symptom assessment and engages them directly in the symptom management process. Patients simply enter their symptom severity scores for nine common cancer symptoms electronically on a touch-screen computer kiosk, which sits at their regional cancer centre, or from their home computer via the internet. Clinicians can access a patient's symptom information, regardless of where the patient entered their scores - clinic, home, or at another cancer centre - and can track this information over time and across health care settings. ISAAC also provides Cancer Care Ontario with the data to report on symptom screening across Ontario and the patient experience. Preliminary evaluation of ISAAC has been positive. Users of ISAAC surveyed gave high ratings to its ease of use and clarity. Clinicians and other stakeholders reported that it allows for better management of the disease if symptoms can be detected as they arise, in real-time. The patient histograms were seen as extremely useful in care management, by providing clinicians with a snapshot of a patient's experience with various symptoms and a view of this experience of over time. This presentation will provide an overview of the ISAAC tool and its development. Challenges in facilitating home-based use of ISAAC will be discussed along with issues related to system integration with electronic records and the electronic challenge of supporting the patient/clinician interaction across care settings. Using Technology to Engage Patients and Clinicians in Electronic Cancer Symptom Assessment and Management: Lessons Learned and Implications for Practice [05 Aud 1330 Carr]<embed... | 8/27/09 | Free | View In iTunes |
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Evaluation of the use of an interactive web-based support program for optimizing the management of Diabetes Mellitus | Background: The introduction of the Internet into medical practice as an information-sharing and communication medium has brought about many opportunities for the management of chronic care. Research has shown that teleconsultation for example is a practical, cost-effective, and reliable way of delivering a worthwhile health care service to diabetics [1,2]. Medicinfo, a leading e-health company in the Netherlands, used this knowledge to develop an interactive web-based diabetes self-management support program, called the Diabetescoach: a low-tech solution for a large group of diabetes patients (type II). The Diabetescoach is aimed at improving access to care by facilitating easier, time-efficient communication between patients and nurses, and at facilitating self-care via education, monitoring, and entertainment for persuading individuals to make life-style changes. A Diabetescoach pilot project runs within three primary care practices (pilot group: 50 patients, 6 nurses). Objective: To assess the added value of the Diabetescoach as a supplement on regular diabetes care. We focused on patient needs, expectations, motivations, and experiences with electronic care via the Diabetescoach. We also assessed nurses' experiences. Methods: We conducted usability tests combined with in-depth interviews with 20 patients and 5 nurses to assess patients' and nurses' experiences with electronic care. Log-files registered system usage and content of patient-caregiver interaction. Via a validated questionnaire we gathered information about patient characteristics, like age, gender, education, diabetes duration, quality of life, diabetes knowledge, and diabetes self-efficacy. Results: Mean age of the participating patients (n=50) was 62 years, with a minimum age of 43 years and a maximum of 80 years. Log-files showed that 80% (n=40) of the total pilot group used the Diabetescoach regularly. Usability tests and interviews revealed that the Diabetescoach is seen as a useful and worthwhile supplement on regular diabetes care. It proved to be a powerful instrument to learn about the disease and about disease control. Usability tests also functioned as a powerful training method; participants were more skilled and more motivated to use the Diabetescoach afterwards. Patients were particularly interested in telemonitoring and the mail contact with their caregiver. Nurses often initiated mail contact; they give feedback on measurements, lifestyle, and make compliments on patients' healthy behaviour. Patients ask for information about nutrition, for personal advice on health issues, they use mail for changing appointments, and for expression of emotions (worries, appreciation about care delivery). Patients like to receive feedback and compliments by mail; it motivates them to adapt to healthy behaviour. Conclusion: The Diabetescoach supports patients in the control of their own care. Patients are particularly enthusiastic about the possibility to mail with their nurse. However, not all patients were motivated or skilled enough to use the Diabetescoach. For electronic care applications, it is important to give adequate training and to explore who suites which technology best and what changes are necessary to reach non-users or drop-outs. Innovations in health care diffuse more rapidly when technology is used that is simple to use, affective aimed at expression of emotions and useful; taking into account the expectations and needs of end-users [3]. 1. Verhoeven F, van Gemert-Pijnen L, Dijkstra K, Nijland N, Seydel E, Steehouder M. The contribution of teleconsultation and videoconferencing to diabetes care: a systematic literature review. J Med Internet Res 2007 Dec 14;9(5):e37. 2. Glasgow RE, Boles SM, McKay HG, Feil EG, Barrera M Jr. The D-Net diabetes self-management program: long-term implementation, outcomes, and generalization results. Prev Med 2003 Apr;36(4):410-9. 3. Cain M, Mittman R (2002). Diffusion of... | 8/27/09 | Free | View In iTunes |
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Methodological Issues and Challenges in eHealth Research Panel | Introduction: Web 2.0 technologies and approaches offer enormous advantages for consumers, health practitioners and eHealth researchers, but they also present challenges, particularly for the ethical conduct of research. Method: A recent systematic review of Internet-mediated research by Lisa Whitehead1 in our panel revealed that the key challenges reported by online researchers cluster into three key areas: 1. Sampling issues Recruitment methods Repeat participation Identity misrepresentation 2. Ethical issues Seeking informed consent Anonymity, privacy and protection of confidentiality Harm minimisation Site security 3. Measurement issues Validity Reliability This panel discusses the above challenges and profiles ethical and practical solutions to them. To stimulate audience discussion, we use our Australia / New Zealand Web 2.0 research studies below as examples of hurdles and solutions. Research Study 1: Online help, apomediation and support from "Informed Supporters" (expert patients) to assist people recently diagnosed with bipolar disorder to take control of their condition. This study investigates whether the role of apomediaries, offered in association with an online psycho-education program, extends beyond helping users with information to collaborating, providing emotional support and giving practical help within the bounds of a serious mental illness. Ethical issues relating to confidentiality and privacy will be discussed. (Dr J Proudfoot, Black Dog Institute, Australia). Research Study 2: The health of tertiary students: exploring on-line and postal data collections methods. This study randomly assigned 2,000 students at a New Zealand University to complete a survey on physical and emotional health either on-line or by post to explore the reliability and validity of the data collection measures and process. The study adds to debate on the potential impact of data collection mediums on results, particularly for measures of subjective symptomatology (e.g. fatigue and anxiety). (Dr L. Whitehead, University of Otago, New Zealand) Research Study 3: A randomised controlled trial evaluating a 12-month online relapse prevention program 'Recovery Road for Bipolar Disorder'. This study utilised online recruitment of participants through a web-based screening questionnaire, obtained informed consent through an online enrolment function and incorporated automatic randomisation into either a study or a control group. (Dr C Barnes, University of New South Wales, Australia, in collaboration with Sentiens Pty Ltd Perth) Research Study 4: 'ReachOut! Central' (ROC: http://roc.reachout.com.au/flash/index) is a web-based interactive educational game using 'real life' scenarios and role-play to assist young people to identify and develop practical coping skills for dealing with life stressors that may be precursors to mental health problems. The study incorporated online recruitment, registration and informed consent procedures, and the use of evaluative online questionnaires and collection of participant program usage statistics. These elements, along with the unique features of ROC program, will be discussed. (Dr Britt Klein, Swinburne University, Australia, in collaboration with Inspire Foundation Australia) Discussion: Our panel will facilitate discussion about common ethical challenges in Web 2.0 research and collaboratively generate workable solutions to the issues. 1 Whitehead, LC. (2007) Methodological and ethical issues in Internet-mediated research in the field of health: An integrated review of the literature. Social Science & Medicine, 65, 782-791. <a style="font:14px Helvetica,Arial,Sans-serif;display:block;margin:12px 0 3px 0;text-decoration:underline;"... | 8/27/09 | Free | View In iTunes |
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Study of the ePatient as a provider of health content in the Internet | -- | 8/27/09 | Free | View In iTunes |
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Women Wading Through the Web: providing women with the tools to evaluate online health information | Background: Using the Internet, women can now access a broad range of medical information in their own homes with relative anonymity. It is assumed that "greater availability of health information via the Internet will lead to the emergence of more informed patients who are better able to assess the risks and benefits of different treatments for themselves." [1] Yet the solution is often flawed. Health information on the Internet is often inaccurate and misleading. Given that anyone with Internet access can easily create and distribute online content, concerns about the credibility of health-based information are especially relevant. It is vitally important that women are given the tools to assess the accuracy and quality of online health information. Criteria for assessing online health information: Health librarians have developed criteria for assessing the quality of online health information. These include instruments and checklists intended to establish whether content is credible, [2] and web interfaces usable. A review of published criteria for evaluating health information on the web reveals that many authors agree on key criteria for evaluating health-related websites. [3] Experts advise Internet users to check a health site's source and currency, and to visit several sites in their search for information. While health librarians clearly know how to assess the quality of online health information, the general public usually does not. Only one-quarter of respondents to a survey on the use of strategies to separate "good" information from "bad" online health information [4] said they follow the recommended protocol of thoroughly checking the source and timeliness of a website's information. This puts women who use online health information resources at serious risk for obtaining, and acting upon, false and misleading information. If women are to use online health information resources effectively, they need accessible and plain language educational tools and best practices information for assessing the quality of information presented. Online Health Toolkit: This paper describes how the staff at womenshealthmatters.ca, Women's College Hospital's consumer website, provided women with the tools to assess the accuracy and quality of online health information. Women Wading Through the Web was designed to provide women with educational tools and best practices information on how to use the Internet to search for health information, judge the quality of online health information, understand medical research and analyze health stories in the media. The presenter will also discuss the challenges of using a dedicated web community to facilitate discussion about accessing reliable online health information and to evaluate consumer satisfaction with the Toolkit. References 1. Henwood F, Wyatt S, Hart A, Smith J. Ignorance is bliss sometimes: constraints on the emergence of the 'informed patient" in the changing landscapes of health information. Sociol Health Illn. 2003 Sept: 25(6): 589-607. 2. Eysenbach, G, Powell J, Kuss O, Sa ER Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review. JAMA. 2002 May 22-29: 287(20): 2691-700. 3. Kim, P, Eng TR, Deering, MJ, Maxfield A. Published criteria for evaluating health related web sites: review. BMJ. 1999 Mar 6;318 (7184):647-9 4. Vital Decisions: How Internet Users Decide What Information to Trust When They or Their Loved Ones are Sick. (Pew Internet & American Life Project: May 22, 2002). <a style="font:14px Helvetica,Arial,Sans-serif;display:block;margin:12px 0 3px 0;text-decoration:underline;"... | 8/27/09 | Free | View In iTunes |
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Will the development of Web 2.0 technology result in a preference for quantity over quality? | Over the last decade the world has experienced a rapid increase in the number of people using the internet for health information seeking and interaction. This increased demand for internet heath information has led to the emergence of large volumes of unstructured and unregulated medical information found on the web. This web-based information is seldom the subject of systematic investigation for its accuracy and appropriateness for patients, highlighting the need for additional research into the field. The rapid development of the internet as a communication tool, and the accumulation of large volumes of information, makes locating valid information extremely difficult especially for those who lack ability to use computers and technology efficiently. A 1997 study examining 40 websites providing advice on the management of a feverish child found that only four of the websites adhered to published guidelines. These high volumes of unregulated internet health information are partly due to there being no agreed standard for the assessment and to ensure accuracy of information presented on the web. This paper addresses the issue of quality of online health information, and asks, as we move forward and develop technologies which emphasise content creation, will the issue of quality of online health information be exacerbated? The emergence of Web 2.0 has facilitated many new online activities which could not have previously been achieved by the world wide web (Web 1.0) technology. Often referred to as the 'social web', it looks to increase social interaction by sharing content which is more easily generated and published by users. Many researchers believe this has implications for the future of healthcare, by enhancing the connection between patients, clinicians and health information. The use of blogs, podcasts and wikis can help to both communicate health information, and increase social support by providing a potentially anonymous space within which online interaction can take place. It also allows the information seeker to rapidly become the information provider, and share healthcare knowledge and experiences quickly and easily. However, this benefit of Web 2.0 technology may also be seen as a limitation when discussing information quality. For example, although health related Wiki's and blogs are an excellent way to share health information, their content can be added and edited by anyone, with a significant number being fuelled by lay users, most often with no professional experience of the health topic they are writing about. This paper aims to discuss that while the benefits of using Web 2.0 to develop communication in healthcare and health education are clear, it is also necessary to consider potential issues, such as quality, which may be more present in Web 2.0's application to healthcare than other uses. This issue is made relevant due to the possibility of high volumes of inaccurate and misleading information being potentially disastrous within a health care setting, as it can be extremely distressing and potentially damaging for some health information seekers. | 8/27/09 | Free | View In iTunes |
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Empowerment by Participation in Online Support Groups for Patients with Arthritis, Fibromyalgia and Breast Cancer | Background: Ever since the rise of online support groups much is expected of the potential empowering effect of participation for patients [1]. Although many have pointed at this empowering effect [2, 3, 4, 5], little empirical evidence exists for how patients feel empowered. Objectives: We explored if and how people with arthritis, fibromyalgia and breast cancer feel empowered by their participation in online support groups. In addition, we were interested which processes that take place in online support groups contribute to these outcomes. Methods: We sent a posting with a link to an online questionnaire to 19 online patient support groups. The questionnaire included questions on demographics, use of the support group, empowering processes (exchanging information, finding recognition, sharing experiences, encountering emotional support and helping others) and empowering outcomes (being better informed, feeling more confident in the relationship with their physician, improved acceptance of the disease, feeling more confident about the therapy, enhanced self-esteem, enhanced social well-being and increased optimism and control). All items concerning the outcomes had the format of a statement that began with 'Through my participation in online support groups...'. Scores on all scales ranged from 'not empowered' (1) to 'very empowered' (5). In total 528 participants responded to the request to fill in the survey (23% arthritis, 22% fibromyalgia, 41% breast cancer). Results: The majority of the respondents were women (n=494) with a mean age of 44 years (SD 10.4 years). The respondents were diagnosed 5 years ago on average (SD 5.9 years). The respondents felt empowered in several ways by their participation. With the exception of 'increased optimism and control' all scale scores for empowering outcomes were above 3.1. No significant differences in empowering outcomes between diagnostic groups were found. The empowering outcome that was experienced to the strongest degree, was 'being better informed'. For example, in total 74% of the patients had the feeling that they had the right knowledge to manage their illness. The empowering outcomes 'feeling more confident in the relationship with their physician', 'increased acceptance of the disease', and, 'feeling more confident about the therapy' were experienced to the same degree. The participants indicated, for example, that they knew better which questions to ask their physician (61%). For many respondents, participation in an online support group enabled easier acceptation of the disease (47%) and helped them to 'open up' about their disease (55%). The empowering outcomes could only be partially predicted by the processes. The most important predictors of the outcome 'being better informed' appeared to be 'exchanging information' and 'finding recognition'. In total, 31% of the variance could be explained. The most important predictors of the outcome 'enhanced social well-being' appeared to be 'encountering emotional support' and 'sharing'. In total, 30% of the variance could be explained. Conclusions: This study showed that participation in online support groups can make a valuable contribution to the empowerment of patients. Healthcare providers should acquaint their patients with the existence of online support groups and with the benefits that participation in these groups can offer. References [1] Ferguson T. Health online and the empowered medical consumer. Joint Committee Journal on Quality Improvement 1997;23(5):251-257. [2] Shaw B, McTavish F, Hawkins RP, Gustafson D, Pingree S. Experiences of women with breast cancer: exchanging social support over the CHESS computer network. Journal of Health Communication, 2000;5(2):135-149. [3] Sharf BF. Communicating breast cancer on-line: support and empowerment on the... | 8/27/09 | Free | View In iTunes |
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The potential and challenges of Web 2.0 in the education of healthcare professionals. | Web 2.0 technologies have the potential to change the education of healthcare professionals, at undergraduate and postgraduate levels, from a didactic one way process, in which information is transferred from the "expert" to the student, to a collaborative and participative process, empowering the student to be an equal participant in the learning process. However there are significant challenges and hurdles which need to be considered. The potential for elearning to enable and empower healthcare students within educational programmes has been discussed for many years, [1] however this has been challenged with calls for moves from instructivist to constructivist learning approaches, built around "Communities of Practice", which potentially provide the greatest scope for learning through interaction and discussion [2]. Web 2.0 technologies are emerging as platforms to enable or encourage students to be collaboratively creating and sharing their own insights into current and emerging themes within their education. This "architecture of participation" has been described as "emphasising the pre-eminence of content creation over content consumption", [3] and the use of Web 2.0 applications as "mind tools to stimulate reflection and actively involve learners in their own construction of knowledge" which have been proposed as a way to yield powerful learning experiences [4]. It may also be important for healthcare professionals to be aware of the emerging technologies, and their potential development in the future as their patients and clients may well be using them. Where software such as blogs, wikis, podcasts and social networking tools are provided by formal education providers they can by made public or restricted to particular groups of students and are often "moderated" by a member of staff. Many students are taking greater control and setting up their own mechanisms, sometimes via platforms such as Facebook, for both structured and "just in time" learning, to enable them to collaborate, and academic staff may be explicitly excluded by the students from these applications. These developments bring challenges to existing structures and power relationships, in which academic staff or experts have control over the learning process, and may shift the power towards the students hands, either individually or in groups. This may be challenging for many, both academics and students, and will require different perceptions of role, and possibly demand a rethinking of existing pedagogy. The emergence of new forms of knowledge generation and distribution such as Wikipedia, brings issues with the assessment of the reliability or accuracy of resources [5] and may challenge the role of academic journals, which are already having to change their production and financial models in the light of open access and eprints initiatives. Additional issues arise in the detection of plagiarism and the identification of clear mechanisms for assessment of group work in credit bearing courses. The potential offered by Web 2.0 technologies in the education of healthcare professionals, is potentially significant, however these developments need to be balanced with the inherent risks and challenges. References 1. Salmon, G. 2002 E-tivities The Key to Active Online Learning. Routledge, UK 2. Moule, P. 2007 Challenging the five-stage model for e-learning: a new approach. ALT-J, Research in Learning Technology. 15(1). 37-50 3. Boulos, M.N. and Wheeler, S. 2007 The emerging Web 2.0 social software: an enabling suite of sociable technologies in health and health care education. Health Information and Libraries Journal 24 2-23 4. McLean, R., Richards, B.H. & Wardman, J.I. 2007 The effect of Web 2.0 on the future of medical practice and education: Darwikinian evolution or folksonomic revolution? eMJA The Medical Journal of Australia. 187 (3): 174-177... | 8/27/09 | Free | View In iTunes |
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The use of Web 2.0 in teaching Medical Informatics to postgraduate medical students: first experiences | Introduction Recent technological advances have shifted the core focus of medical education towards more active learning approaches. This shift is certainly related with evolutions on the Internet and the Web, and certainly the emergence of Web 2.0. The latter is being stressed as a promising tool for advanced support of medicine and medical education. Although Web 2.0 emphasizes on participation, in its early days is still used in the majority of cases to hold and provide content. In this paper, we demonstrate how we used Web 2.0 tools like wikis, blogs and discussion forums in delivering specific topics of Medical Informatics to postgraduate medical students. Methodology The approach is based on a blended learning scheme, where e-learning is actually complimentary to traditional classes (lectures, demos and labs). The approach utilises the SCORM standard within an open source learning environment (Moodle). Emphasis is placed not only in creating and promoting information, but also how to best utilise Web 2.0 as an active support mechanism towards a problem (or case) based learning. In our approach, students and instructors use the web as a virtual place to collaborate and create new knowledge and new educational experiences. Evaluation Students' evaluation was asked in two stages. In the first stage, students were asked to complete an anonymous questionnaire emphasising merely on the use of Web 2.0 tools. The Moodle system lead the logged-in students to an external web site powered by another open source source survey tool, namely, "PhP Surveyor", so as to maintain anonymity. Evaluation of the results indicates that students were quite satisfied by this approach, and were happy with the collaboration opportunities offered to them. Most of them admitted that they were tempted to "read what others have contributed in their own personal blogs" (which by the way were given public access to the enrolled students). In addition, they believed that they found the student collaboration opportunities offered by the system tools quite useful and enhancing the overall learning process. In the second stage students were asked to evaluate the whole course using a dedicated, home made, evaluation software, specifically developed for course evaluation purposes within the postgraduate program of the Medical School at AUTH. These evaluation results demonstrate a significant course improvement of the last year quality when compared with those obtained in the past 5 years. Discussion Evaluation of results indicates that Web 2.0 technologies have a major role to play within the educational arena. Although we have applied them to a physically akin to them course, i.e. the medical informatics course, the methodology we have utilised is by no means exclusive to other courses. In the contrary, we believe the approach is directly applicable, and we intend to expand this effort to a number of medical curriculum courses over the next few years. The use of Web 2.0 in teaching Medical Informatics to postgraduate medical students: first experiences [4 Cr3 1530 Bamidis]<param name="movie"... | 8/27/09 | Free | View In iTunes |
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Medical education and building an on-line reputation in the world of web 2.0 | The new websites, services and tools of web 2.0 can play an important role in the future of medical education. These web tools, expert-based community sites, medical blogs and wikis can facilitate the work of physicians, scientists, medical students or medical librarians. The new generation of web services can change the way medicine is practised and healthcare is delivered. In the new, web-based world, building an on-line reputation is becoming crucial for medical professionals. Patients are more likely to search for information about their doctors on the web, and a forum entry should not be the only resource about a medical practice. That is why physicians should take control of the dissemination of medical information in order to represent properly their own practices on the web. Building an on-line reputation is a matter of hard work, effort and good marketing. Writing medical blogs, participating in medical wikis or being a member of medical communities can improve the search results of advertising your medical practice or research. Regarding medical education, medical blogs provide content and express opinion on healthcare that you can never find in a medical paper. More and more physicians and medical students maintain their own blogs nowadays as it is a good method for making new contacts with people all over the world and is an excellent tool for career building. Second Life is an online 3-D virtual world with more than 13 million residents as of April, 2008. This virtual world makes it easier to communicate with people; to educate people without boundaries; to use videos, images, texts, web links, online presentations, tutorials and e-learning tools at the same time. The future of medical education is being constructed at the Ann Myers Medical Center, which was established in 2006 to test the possibilities of training medical and nurse students in a virtual medical center. The AMMC organizes medical exercises which are free and open to any kind of medical professionals. Educators present medical cases, upload medical images which medical students have to discuss and find out the proper diagnosis. There are some other educational opportunities in Second Life such as the Heart Murmur Sim where you can listen to cardiac murmurs. Second Life offers numerous educational opportunities for physicians and medical students as well. A medical professional does not just help fight quackery and medical misinformation by taking an active part in the medical communities and databases of web, but he can also create his own on-line reputation. It is vital that medical professionals take control of publishing medical information on the web. And by using these tools to ensure the quality of medical articles and blogs on the web, medical professionals can also set their online presence. My aim is to present all the features of web 2.0 in the fields of medical education and healthcare through the story of my medical blogs which have been visited for more than a million times in one year's time and have won several blog awards. Medical education and building an online reputation in the world of web 2.0<param... | 8/27/09 | Free | View In iTunes |
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Medicine 2.0 and Medical Faculty Development | The University of Saskatchewan, like many Canadian Universities, has 800 part-time medical faculty members scattered throughout the province, many of them working in small communities with limited opportunities to attend faculty development workshops in urban locations. Having faculty development personnel travel to remote locations to conduct workshops 1-1 is economically challenging and may not meet the needs for collegial interaction. As Saskatchewan moves towards a more distributed medical education model, new pedagogies and technology become essential topics for faculty awareness. In the past 5 years, there has been a rapid increase in online technology that allows dispersed communities to interact with one another. Web 2.0 refers to online tools such as blogs, wikis, social networks and virtual simulations that allow participants to involve themselves in learning and connecting to others at a distance. Combine these tools with the need for faculty development and the University of Saskatchewan sees an obvious fit both in the ability to offer learning opportunities and to role model how to use Web 2.0 technology with medical students. Deirdre Bonnycastle, the Clinical Teaching Development Coordinator for the College of Medicine will discuss the successes and failures of the Web 2.0 tools such as Elluminate, Moodle, blogs, wikis, podcasts, Second Life, Facebook, Ning and TeacherTube that she has used as a faculty development tool. | 8/27/09 | Free | View In iTunes |
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Providing Online Access to Point-of-Care Information: Lessons from the OntarioMD.ca Physician Portal | OntarioMD.ca (www.ontariomd.ca) is a Web portal which provides clinicians access to a variety of information resources. The content delivered via the portal is organized and presented according to lessons gleaned through the ongoing engagement of portal users and other stakeholders. Recent studies regarding the information needs of clinicians (Davies (2007) and Perley et al. (2007), have concluded that online content must meet certain criteria in order to be effective. These findings include the need for content to be: available at the point of care, easily searchable, customizable and anticipate the user's needs. Since 2006, OntarioMD.ca has been developing resources which address these criteria. This presentation will demonstrate how OntarioMD.ca engaged in the development of resources and best practices which address the clinician's need for reputable point of care information. References Davies K. The information-seeking behaviour of doctors: a review of the evidence. Health Information and Libraries Journal, 25, 2007. OntarioMD Web portal. URL: http: //www.ontariomd.ca Perly CM, Gentry CA, Fleming AS, Sens KM. Conducting a user-centered information needs assessment: the Via Christi Libraries' experience. J Med Libr Assoc 95(2) April 2007. Providing Online Access to Point-of-Care Information: Lessons from the OntarioMD.ca Physician Portal [4 Cr3 1330 Aprile]View SlideShare presentation or Upload your own. (tags: medicine20 20) | 8/27/09 | Free | View In iTunes |
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Knowledge Exchange Nodes in Public Health: Two successful practical experiences | The importance of the traditional core public health areas of epidemiology, biostatistics, environmental health, health services administration, and social and behavioural sciences is still paramount. However, public health professionals will be better prepared for the future if they achieve competency in other eight areas: informatics, genomics, communication, cultural competence, community-based participatory research, global health, policy and law, and public health ethics. For many Schools of Public Health (SPH) around the globe such new framework is certainly overwhelming. On "the age of the web 2.0.", SPH should foster new forms of scientific and educational collaboration, and must actively develop innovative ways of community-based research, learning, and service. Teaching, Research and Knowledge Exchange Nodes -that connect the work of different SPH by using the Internet and Web 2.0 tools- may be a valuable option. Description of the experience: In this context, we would like to present two innovative experiences in which the Andalusian School of Public Health (ASPH) is participating. > Virtual Campus of Public Health. A web-based initiative sponsored and coordinated by the Pan American Health Organization (PAHO) with the collaboration of six SPH (INFOMED-Cuba, FIOCRUZ-Brasil, ASPH-Spain, National SPH-Chile, Cayetano Heredia-Peru, Antioquía-Colombia). A network of Knowledge Exchange Nodes (KEN) that maintains a central node through RSS feeds. It is designed to share courses, learning objects, educational materials, research projects, publications and information resources under Creative Commons (CC) and Open Educational Resources (OER) licences. > Best practices in Public Health teaching and learning. A pilot content management system (CMS) designed by the ASPH to promote and facilitate the exchange of educational initiatives. It includes a "best-practice bank" for successful practical experiences in teaching public health, and an online searchable database with more than 200 critically-appraised documents about learning methodologies for health sciences. There is also a report on "evidence-based teaching for public health" and a "benchmarking forum". This web-site will serve as a common best-practice platform for all the institutions mentioned above, and it will be open to any other organization interested in collaborating. Conclusions and discussion: To address the complex challenges of the 21st century and make additional improvements in the health of the public depends, in large part, upon the relevance and quality of public health education and training worldwide. SPH need to create different forms of relationship using an imaginative expansion of a global collaborative culture Knowledge Exchange Nodes & Networks will help realize an unprecedented vision of public health that support free sharing of applied innovation and dissemination and facilitate the exchange and uptake of "new knowledge using new technologies". Knowledge Exchange Nodes in Public Health: Two successful practical experiences [4 Cr3 1330 Jimenez]<param name="movie"... | 8/27/09 | Free | View In iTunes |
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Planning the Development of the Singapore National Health Portal | Background: Singapore is an island city-state in Southeast Asia with a land area of approximately 700 km2 and a multi-ethnic resident population of about 3.6 million. A vibrant global city and a thriving centre of commerce and industry, Singapore's competitive modern economy enjoys high economic growth, high literacy rates, and life expectancy comparable to other high-income countries. Based on the National Health Survey in 2004, an estimated 1 million Singaporeans suffer from at least one of the four major chronic diseases, namely diabetes mellitus, hypertension, lipid disorders, and stroke. To address the growing burden from these chronic diseases, the Singapore government embarked on a national strategy to promote the concept of Active Health Management (AHM) to all Singaporeans. This strategy focuses on inculcating individual responsibility towards one's health condition through raising awareness and providing patient empowerment among the population. The Health Promotion Board (HPB) is the government agency responsible for driving health promotion initiatives to improve the health and fitness of Singaporeans and to empower Singaporeans to attain optimal health throughout life. As part of the AHM strategy, HPB was tasked with developing the National Health Portal (NHP) - a personal health information portal enhanced with tailored empowerment tools for behavioural change. Vision: The vision for the NHP is a one-stop web portal that empowers Singaporeans and their care-givers with their personal health and medical information and provides preventive and monitoring tools for personalised health management, so as to achieve better health outcomes. Conceptualising the NHP: The NHP Taskforce, consisting of stakeholder representatives, was formed to drive the development of the NHP. To understand the landscape for health portals, a feasibility study was commissioned. Phase I involved a global review of health portals; Phase II involved dialogues with local stakeholder representatives to assess their readiness and gather their inputs for the NHP. Plans for the implementation of the National Health Portal were developed based on the study findings. Implementation Plans for the NHP: The NHP aims to empower users by providing access to their personal health information. This includes self-entered data (e.g. user profile, Health Risk Assessment) with their Electronic Medical Records (EMR) obtained from healthcare providers. Based on the user's personal health information, tailored health information, relevant Behavioural Health Intervention Programmes (BHIP), and supporting health management tools will be provided. The implementation of the NHP will be conducted over 3 distinct phases from 2008 to 2011. The initial phase will focus on self-entered data of at-risk individuals and chronic patients from the public health sector, and include three BHIPs (weight management, smoking cessation, and diabetes management). Integration with EMRs from public sector healthcare providers, interfacing with the private healthcare sector medical records, and the inclusion of additional BHIPs will be implemented in subsequent phases. Planning the Development of the Singapore National Health Portal [4 Cr3 1330 Amin]<param name="movie"... | 8/27/09 | Free | View In iTunes |
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Preventive Medicine and the Allen Behavioral Change Model: A Collaboration for Health Behavior Change Using Web-based Interven | Preventive Medicine and the Allen Behavioral Change Model: A Collaboration for Health Behavior Change Using Web-based Interventions Michael Allen, Ph.D., Julie Dirksen, M.S., Will Thalheimer, Ph.D. Charles P. Bosmajian, Jr., Ph.D., Edward A. Murphy, and David O. Wiebers, M.D. Presenter: Michael Allen, Ph.D. The prevalence of chronic disease and the principal risk factors that lead to disease onset can be significantly diminished through lifestyle choices people make in their everyday lives. Interactive Web-based media has the capacity to assist millions of people to adopt healthy lifestyle practices through very individualized guidance tailored to each person with whom it interacts. This paper describes a new paradigm for Web-based health behavior change developed through a collaboration between Preventive Medicine, a healthcare informatics company, and Allen Interactions, a leading developer of custom e-learning applications. The concept is designed to empower individuals to integrate preventive healthcare strategies into their daily lives and inexpensively maintain frequent contact to monitor and reinforce such behavior. This model offers a distinctive mix of medical and behavioral science, presented in a non-intimidating, interactive system. It provides interesting, engaging, and informative features that tailor the behavior health change process to each individual to help them overcome the inherent difficulties in the behavioral and lifestyle change process. A variety of behavioral science and information technology innovations designed to engage individuals continuously in their own personalized prevention and lifestyle plans will be described. Health behavior change can use the viral characteristics of Web 2.0 which enable the creation of large social networks sharing common interests and providing mutual support. The explosion of social networks speaks to the popularity of network communication and the developing research base speaks to its effectiveness in supporting behavior change. The model also describes methods for creating frequent personalized contact with users on a large scale using a wide range of web-based applications. Contrasting with other models, which emphasize rational thought and make reasoned cases that individuals should adopt healthier behaviors, this model focuses on the emotional and automatic underpinnings of the behavioral choices that people make. Methods that help users connect emotionally with interactive media are described. Strategies are presented for maintaining interest and reducing attrition, including the use of intrigue, surprise, and an emphasis on graphical rather than textual interactions. While message tailoring is used by some web-based applications, it is suggested that to make full use of the interactive capabilities of Web 2.0, strategies informed by e-learning research and experience should be more fully utilized. Methods of tailoring messages to individuals using algorithms based on unique characteristics of users are described. The model also describes an interactive and intriguing process of assessment that goes beyond simply transferring paper and pencil instruments to a computer screen as is commonly done in many of today's web-based applications. By combining the capabilities of the Web 2.0 environment with a new model of behavior change based on years of e-learning research and development, a significant increase in effectiveness over current web-based health behavior change efforts can be obtained. | 8/27/09 | Free | View In iTunes |
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e-health in a Remote and Rural Setting in the North of Scotland- An Evolving Success Story | -- | 8/27/09 | Free | View In iTunes |
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Personally Tailored Health Information: A Health 2.0 Approach | At present, strategies used for health tailoring typically require users to complete extensive questionnaires on health and behaviors to tailor sites to health needs. This poses formidable barriers to delivery of tailored messages. Are there alternative means of collecting online behavioral information and increasing the availability of highly tailored health information for health consumers that does not require lengthy and time consuming surveys? The presentation will address early results in testing the following hypothesis: can information contained on an individual's social networking page(s) be used to generate meaningful tailored health messages? The approach to be discussed uses publicly shared information contained in individuals' online profile(s) in social networking sites to tailor health information. Through an opt-in mechanism and connecting the dots within and across individuals' "online networked behavioral life" a tailored health profile could be presented to an individual. Such a tailored health profile could address any number of highly contextually relevant health issues, issues that likely relate to many public health priorities. The most salient public health themes for tailored information are likely to revolve around social, emotional and mental health, sexual and reproductive health/HIV and STD prevention, substance abuse, nutrition, physical activity, chronic and infectious disease prevention, and injury prevention. With an eye to the future, it has the potential to become a very personal facet of an overall electronic personal health record - one that could conceivably connect to other sources of personal health and medical information. Personally Tailored Health Information: a Health 2.0 Approach [4 Cr3 1100 Bonander]View SlideShare presentation or Upload your own. (tags: medicine20 <a style="text-decoration:underline;"... | 8/27/09 | Free | View In iTunes |
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E-epidemiology - adapting epidemiological data collection to the 21st century | We aim to present the prerequisites to use cell phones and SMS as a means of contact in LifeGene. LifeGene (www.lifegene.se) is a Swedish population-based prospective resource on lifestyle, health and genomics. The cohort will include at least 500.000 Swedes, starting with index person 18-49 years old and their household. This cohort will regularly (annually) be contacted to assess in depth exposure information through electronic means (web, cell phones, etc). There will be regular surveillance of morbidity through population based registers, and study participants will be contacted to assess symptoms for outcomes not typically reported in national health registers or ascertained via hospital discharge (e.g. acute infections, psychiatric disorders and allergy). The rapid transformation of the society during the last decade has altered the possibilities for data collection in epidemiological studies (1-3). The modern society constantly generate new trends, and people change site and habits more often then twenty and even ten years ago. The traditional approaches, face-to-face interviews and paper questionnaires, are restricted to fixed sites and are costly in terms of time-delay and administration (4, 5). Introduction of new information and communication technologies such as the web, Interactive Voice Response (IVR) and cell phones hold great potential as innovative tools for medical data collections (6-9). E-epidemiology is the science underlying the acquisition, maintenance and application of epidemiological knowledge and information using digital media, and hold the potential to adapt medical data collection to a modern society (10). Using digital technologies, self-reported data through questionnaires can be replaced by objective measurements resembling data gained at health care services. The high access of cell phones gives a possibility to use the device for smaller questionnaires. Many new mobile phones include GPS (Global Positioning System) and JAVA technology, which gives ever more opportunities for real-time data collection. Sweden has today among the highest Internet and cell phone penetration in the world, making the population suitable for introducing new technologies in data collection (11). The Department of Medical Epidemiology and Biostatistics (MEB) at Karolinska Institutet in Sweden has since 2001 designed and evaluated several studies using e-epidemiology. In 2003, the first large scale web-based study including 47,859 women in the age group 41-60 was conducted (12). Today, the department has used the Internet for several large scale population-based studies, including an Internet based-hearing test and a surveillance system utilizing IVR and a web-based application. Experiences of using cell phones include sending SMS for identifying influenza vaccination coverage among the Swedish population and daily self-report of physical activity level trough a JAVA based questionnaire. In a previous study, we have studied the feasibility of using SMS in a study population between 18-49 years. Our results indicate that no bias is introduced when using SMS compared to telephone interviews and that data collected is comparable, based on socio-economic and demographic features gained from Swedish population based registers. 1. Dillman D. Presidential Address: Navigating the Rapids of Change: Some Observations on Survey Methodology in the Early Twenty-First Century. Public Opin Q 2002;66:473-494. 2. Couper MP. Technology Trends in Survey Data Collection. Social Science Computer Review 2005;23:486-501. 3. Kempf AM, Remington PL. New challenges for telephone survey research in the twenty-first century. Annu Rev Public Health 2007;28:113-26. 4. Siemiatycki J. A comparison of mail, telephone, and home interview strategies for household health surveys. Am J Public Health 1979;69:238-45. 5. Voigt LF, Koepsell TD, Daling JR. Characteristics of telephone survey respondents according to willingness to... | 8/27/09 | Free | View In iTunes |
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Patient Problem-Solving on the Web: How do Patients Use Web Forums to Cope with Chronic Disease? | Introduction: Patients' use of the web, particularly patient-to-patient (e.g., online fora) ,is playing an influential and transformative role in health care, particularly around chronic diseases (Fox07). We need to understand the specific types of work that patients attempt in online fora and the barriers or facilitators to their goals. This can guide design of new web health technologies, across the varied types of sites, tools, and activities. We are studying naturally occurring material (Coulson,Buchanan,&Aubeeluck07) postings on health fora about several chronic diseases. Method: We have collected a large amount of material from public forums on several chronic diseases. We have selected fora and within fora sampled threads over time with additional inclusion of long threads. Our initial analysis focuses on the first message of each thread, to identify the issues patients raise and how exchanges are initiated. We have developed coding to capture variation and patterns suggested by extensive reading of the material. In our talk we will present qualitative and quantitative findings. Results: We will report on three of the first-message codes we developed, for Form, Topic and Schema, and summary results. Form was coded as Ask (for information or action), Tell (personal or general information), and Other (including Greetings and Jokes). Topic was coded as Physiological (treatments, mechanisms...), Pragmatic (providers, insurance,...), and Social/Emotional (comfort, sympathy, validation). Neither Form nor Topic codes have mutually exclusive values: For example, the primary form of a message might be ASKing for information, but include TELLing; or multiple topics might be addressed. In our initial sample of 100 threads, 60% of first messages concerned Physiological, 40% were Social/Emotional, 40% were pragmatic, and few percent were other. 33% of the messages were multi-topic. We looked for frequently recurring message 'schemas', conventional structures of the message as a whole. 1) In the Problem&Question schema, the user asks a question about a problem (typically, own health) but also tells about their condition as background; 1/4 of the messages fit this schema. 2) In Give-Information, the user simply posts information judged valuable to the community or an individual; 1/8 of the messages fit this schema. Content may be expert-authored or come from personal experience. Discussion: Overall, a wide range of difficult activities were addressed in first-messages. On the cognitive side these included reasoning about causes and treatment effectiveness, responding to or planning for visits to providers, soliciting help in making a decision, and gaining initial understanding of an unfamiliar condition, treatment, or test. On the emotional side, these included asking for help facing a frightening event, venting, validating experience, and providing specific encouragement or concern. Message coherence and complexity varied greatly. We will report qualitative and quantitative analysis of first-messages on user forums for chronic disease, characterizing the types of problems that users try to solve in online communities. Our next step is to look at the problem solving outcomes and methods of the community's response across a thread. We also plan to compare this to other web forms of patient-to-patient interaction. Patient Problem-Solving on the Web: How do... | 8/27/09 | Free | View In iTunes |
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Moderated online social networking for smokers: Content of first posts from 2,562 members | Objective: Social support and group therapy is associated with successful smoking cessation. However, many smokers simply do not have access to, or time to participate in, real-world smoking cessation clinics or support groups. Would the convenience or accessibility of online versions of social support facilitate connection between widely dispersed groups of quitters who may experience isolation from either a geographic or temporal perspective? Although increasingly popular, there has been little research or best practice guidelines in the general development, management, and sustainability of online social networks for behaviour change or Web Assisted Tobacco Interventions (WATIs) specifically. Key learnings from over eight years of eHealth social network management will be fused with the results of a qualitative study illustrating theoretical aspects of online social support, common discussion themes, average response times for new users, and the characteristics of smokers who post in an online smoking cessation support group. Methods: Data were collected from StopSmokingCenter.net version 5.0, a WATI equipped with an online social support network moderated by trained Health Educators from November 6, 2004 to May 15, 2007. Demographics for both users and non-users of the online social support network were analyzed, and qualitative analyses were conducted to explore message themes and message content. The frequency of and patterns of posting were also analyzed. Results: 16,764 individuals registered, with 70% reporting being American. The mean age of registrants was 38.9 years and 65.4% reported being female. The mean number of cigarettes smoked was 20.6 per day. The mean score for 6,849 (41%) users who completed the Fagerstrom Test for Nicotine Dependence was 5.6. Of all registered members 15.3% (n=2,562) made at least one post in the Online Social Support network with 25% of first posts receiving a response within 12 minutes. The most frequent first posts were from recent quitters who were struggling with their quit attempts and most responses were from members who had quit for a month or more. Demographic characteristics between Support Network users (Posters) and registered users who did not post (Lurkers) were statistically but not clinically significant. Conclusions: Peer to peer responses to new users are rapid, indicating that online social support networks may be a particular benefit to recent quitters who experience difficultly in their cessation attempt. Accessing this kind of rapid support from a professional would take an inordinate amount of time and money. The interactions appear consistent with in person social support groups. Further research in the effectiveness of WATIs with online social support networks is required to better understand the contribution of this feature to cessation. Also of importance will be determining if there is benefit for those who do not post but view the discussion of others. A version of the data collected in this study was presented by Dr. Peter Selby at the Society for the Study of Addiction (SSA) 2007 Annual Symposium, York, United Kingdom, November, 2007. An original paper utilizing data from this study has been submitted to the Journal of Medical Internet Research (JMIR) special issue for Web-Assisted Tobacco Interventions (WATIs) Moderated online social networking for smokers: Content of first posts from 2,562 members [4 1530 Aud... | 8/27/09 | Free | View In iTunes |
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Living with HIV/AIDS and use of online support groups | -- | 8/27/09 | Free | View In iTunes |
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From Social Networks to Social Medicine: Exploring the role of online interventions | Background: The Canadian healthcare system supports an universal publicly funded health insurance system that insures the costs of medically necessary services without co-pays to all legal residents of Canada, including permanent residents [1]. To ensure sustainability of this system, innovative cost effective and timely ways for delivering insured services are necessary. By pushing the boundaries of clinical practice, Web 2.0 technologies, including the proliferation of online communities [2, 3], provide possible alternatives for the provision of care to a nation. Caring Voices (www.CaringVoices.ca), a national platform for providing support and clinical education to cancer survivors is one such example and is one of the few online communities directly associated with an hospital. Caring Voices offers barrier free access to health care professionals for all Canadians, and offers both professional and peer-to-peer support and clinical education. Objective: To describe the creation of an hospital based social networking community, and to explore its feasibility for the delivery of clinical education and supportive care, and for conducting clinical research within the context of the Canadian health care system. Materials: www.CaringVoices.ca supports cancer survivors through asynchronous communication using forums, and synchronous text-based communication using a series of scheduled monthly events. Events provide clinical education and supportive care, and are moderated by either peer survivors, members of community cancer agencies, or health care professionals, including physicians, nurses, social workers and allied health care professionals. Methods: Formal usability testing was conducted with eight participants using open-ended scenarios and participant observations. Informal usability data have been collected since launch of the platform in 2006, and two feasibility studies are being conducted to explore the possibilities of using the platform for clinical research. Results: A total of 1180 users registered in the first 18 months with an average of 49.5 users registering per month. On average there are 9 monthly synchronous events with clinician led events account for 35% of synchronous communications. Other events included peer led support chats (41%) and living with cancer chats led by other experts in the cancer care community (24%). For clinically focused events moderators have been recruited from medicine (n=2), nursing (n=3), allied health (n=4) including social work, dietician, physical therapist and clinical psychologist, and other professionals (n=2) including a medical librarian and a personal trainer. Collaborations have been established with 3 hospital based cancer programs, 4 community based cancer programs, and both formal and informal training sessions have been provided for online moderators. Conclusions: Hospital based social networking communities provide a new and innovative way of meeting patients' needs for clinical education and support in a system that is committed to the provision of care but has limited resources. In addition to meeting patients' needs this approach may result in cost savings, patient empowerment and activation and is a way of achieving patient centred care. Providers' willingness to participate in alternate models of care delivery will dictate the success of these communities. Wide scale adoption of these innovations will have an impact on care delivery and how research is conducted. References 1. Detsky, A.S. and C.D. Naylor, Canada's Health Care System - Reform Delayed. N Engl J Med, 2003. 349(8): p. 7. [Medline] PMID: 12930935 2. Schweizer, K.J., H. Krcmar, and J.M. Leimeister. The role of virtual communities for the social network of cancer patients. in Twelfth Americas Conference on Information Systems. August 4-6, 2006. Acapulco, Mexico. URL:... | 8/27/09 | Free | View In iTunes |
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Patient-initiated Online Support Groups: Motives for Initiation, Extent of Success and Success Factors | Background Nowadays patients are able to choose between many online patient support groups [1, 2]. Most groups are initiated by individual patients or patient organizations. The threshold to start an online support group is low [3]. With patient-initiated groups now mushrooming, a need for an increase in research on this type of online support group is warranted [4]. Objective In a qualitative study, we explored the motives and goals of people who take the initiative to start such a group, so called webmasters. In addition, we wanted to learn more about how webmasters define success and success factors. Methods The webmasters of all Dutch online support groups for patients with arthritis, fibromyalgia and breast cancer (N=26) were approached if they were willing to be interviewed. In total 23 webmasters (7 arthritis, 8 fibromyalgia and 8 breast cancer) agreed to participate. The interviews were audio taped with prior consent of all participants and transcribed verbatim. Data were analyzed by two coders, using inductive analysis. Both coders separately read the entire transcripts several times, to identify emerging themes. Then the two coders met to discuss their findings in order to resolve differences. Results The analysis of the interviews revealed that most webmasters have altruistic motives for initiating a group, such as the provision of information and support or the empowerment of patients. However, several webmasters also mentioned intrinsic motives, like a hobby, or even as a kind of advertisement for a book. Webmasters defined success as the fulfillment of the goals they had in mind when they initiated their groups. Our study showed that before the support group goes online (the initiation stage), several decisions have to be taken about access, embedding, design, and content of the online group. The webmasters mentioned a number of pros and cons of the differing options, and stressed that the decisions need to be in coherence with their goals. When the group is online (the evolution stage), the success is dependent from the webmaster's success in managing the processes and people in the online group. Although webmasters have less influence over these aspects, since they do not control the participants of the online group, the webmasters mentioned pointers concerning the ways of promoting and financing the group, how to keep the group alive, the extent of moderation, the organization of meetings and rituals and the extent to which the wishes of the participants should be followed. Conclusions Our study yielded into guidelines for webmasters that might lead to successful online patient support groups. Success of the group is important, since it can be expected that effects of participation in an online support group for patients may vary, depending on the group's success. References [1] Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res 2007 May 14;9(2):e12. [2] Ginossar, T. Online participation: A content analysis of differences in utilization of two online cancer communities by men and women, patients and family members. Health Commun 2008;23: 1-12. [3] Preece, J. Online Communities. Designing usability, supporting sociability. Chichester, UK: Wiley, 2000. [4] Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health-related virtual communities and electronic support groups: systematic review of the effects of online peer-to-peer interactions. BMJ 2004; 328: 1166-1170. <a style="font:14px Helvetica,Arial,Sans-serif;display:block;margin:12px 0 3px 0;text-decoration:underline;" href="http://www.slideshare.net/eysen/patientinitiated-online-support-groups-motives-for-initiation-extent-of-success-and-success-factors-4-1530-aud-van-uden-kraan-presentation?type=powerpoint"... | 8/27/09 | Free | View In iTunes |
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Web 2.0 systems supporting childhood chronic disease management: a general architecture compliant with the WHA eHealth Resoluti | Introduction: At the time they reach adolescence, 10-15% of all children live with a chronic disease. The recent technical advances have provided a foundation for ubiquitous and proactive health systems that use data from multiple sources to supply individuals and communities with support to improve their state of health and avoid health risks The aim of this research was to develop a general Web 2.0 system architecture compliant with the WHA eHealth resolution for support of children with a chronic disease. Methods: Participatory action research was used to stepwise define a design specification in the form of a pattern language. Support for children diagnosed with diabetes type 1 was used as the example area. Each individual design pattern was represented graphically and textually in the form Title, Context, Problem, Solution, Examples and References. Application references were included at the lowest level in the graphical overview in the pattern language but not specified in detail in the textual descriptions. The design represented in the pattern language was progressively implemented in a Web 2.0 system during the development process. The resulting system was introduced for patients, relatives, and caregivers in 2006. Results: The resulting design patterns describe a Web 2.0 architecture supplying three main services to communities including children suffering from a chronic disease: • access to resources for development and maintenance of the specific competences needed for management of the chronic disease in the community; • endorsement of learning about the chronic disease management through online peer-to-peer communication; • systematic accreditation of learning materials and processes The design patterns constituting the architecture are divided into functional and non-functional design elements, and formulated at the levels of organizational, system, and application design. Two application-level preconditions were identified for implementation of the architecture in specific communities. First, the implementations have to be epidemiologically sensitive in order to support provision of age- and need-adjusted delivery of services on an equal basis to both resourceful and vulnerable groups of children. This means that the applications that constitute the interface between the system content and the users must be chosen to suit the information infrastructure in the community and be affordable for the broad majority of patients and their families. Second, to provide individualized support to children with a chronic disease, the system has to be accessible at all times and in all types of daily-life situations. Consequently, the applications cannot be restricted to stationary computer platforms, but also need to be available at different types of mobile devices, e.g. personal media players and cell phones. Conclusions: Even though a high level of user participation in developing and managing content is the core of the Web 2.0 concept, the WHA ehealth resolution necessitates to structure this participation and to assure the medical quality of the services that are provided. The use of design patterns allowed representing the core design elements of a Web 2.0 system architecture upon which an 'ecological' development of content respecting these constraints can be built. <a style="font:14px Helvetica,Arial,Sans-serif;display:block;margin:12px 0 3px 0;text-decoration:underline;" href="http://www.slideshare.net/eysen/web-20-systems-supporting-childhood-chronic-disease-management-a-general-architecture-compliant-with-the-wha-ehealth-resolution-4-aud-1330-timpka-presentation?type=powerpoint" title="Web 2.0 systems supporting childhood chronic disease management: a general architecture compliant with the WHA eHealth Resolution [4 Aud 1330... | 8/27/09 | Free | View In iTunes |
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Asklepios: The CMA's new social networking site for Canadian physicians | In August 2008, the CMA will be launching Asklepios, its social networking site for Canadian physicians, medical students and residents in Canada. which will be a very significant development for enabling the use of web 2.0 technologies by Canadian doctors. This talk presents an early first look at Asklepios. Asklepios is an online community that allows physicians to make new contacts, get advice from colleagues, and collaborate with physicians all over the country. | 8/27/09 | Free | View In iTunes |
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Expert Patients as Apomediaries | Introduction Bipolar disorder is chronic condition associated with significant disability, with recent estimates suggesting a lifetime risk of 5%. Relapse rates are high. Little is known about the experiences and difficulties faced by consumers after receiving a diagnosis of bipolar disorder, such as filtering and accessing reliable information, and the degree to which these issues affect their ability and willingness to learn how to take control of their illness. Method A qualitative study was conducted which explored the experiences of people after receiving a diagnosis of bipolar disorder, as communicated online to Informed Supporters (expert patients who have been managing their bipolar disorder effectively for two years or more and are trained to provide an apomediary function to those newly-diagnosed with the condition). The study was part of a wider randomised controlled trial evaluating an online psycho-education program. Supporter contact was limited to two contacts per week per participant. No constraints were imposed on the number of contacts initiated by participants nor on the type of issues raised. Results Twenty-six participants with recently-diagnosed bipolar disorder discussed issues and concerns online with Informed Supporters. Within the bounds of a serious mental illness, the nature of the interaction included guiding participants to information, collaborating, providing emotional support and giving practical advice. Participants found the apomediary function very helpful. Issues raised included medication side-effects, coping with symptoms, reaction to diagnosis, identifying early warning signs and triggers, loss of sense of self, uncertainty about future and stigma. Discussion Consumers are often reluctant to discuss issues of a personal nature with their health professionals, yet these issues, if left unresolved, can undermine take-up of effective treatments or lead to premature discontinuation, which, in turn, can result in worsening symptoms and reduced quality of life. Expert patients offer empathy, real-life experience, credibility and practical advice. In addition to helping folk with newly-diagnosed bipolar disorder navigate through the onslaught of information about the condition, apomediaries in this context can help to reduce feelings of isolation that often accompanies diagnosis and can facilitate self-management and control of the condition. | 8/27/09 | Free | View In iTunes |
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Inside the Health Blogosphere: Governance, Quality and the New Opinion Leaders | Introduction: Although health-related blogs are exploding in number on the Web, there has been very little examination of the governance of these blogs. In light of criticism from various sectors (especially from prominent members of the lay media, and from the clinical community) over the quality and governance of health blogs, I wished to undertake an empirical analysis of the governance of the most popular health blogs on the Web. Further, I wished to compare the content of health blogs to the health-related content of the most popular Canadian newspapers to determine whether blogs offer greater opportunity for consumers to obtain relevant health news content. Methods: Based on a relational link analysis and a review of the number of active subscribers, I identified the highest density health blogs on the Web. I then created a "blog governance score" based on a number of governance best practices (incl. user privacy protection and content objectivity). I also analyzed the findings to determine the quality of the content of health blogs as compared to lay media health coverage (i.e., in newspapers). This was done by reviewing comparative coverage of the 10 most important medical news stories of 2007 as defined by a consensus of more than 60 clinical experts across North America. Results: Highly trusted health blogs are mostly "start-ups" that win loyalty via a combination of first-to-market prominence, niche and randomness. Very few highly used health blogs are affiliated with a major media company. Further, a higher governance score does not necessarily correlate with higher global usage (i.e., traffic rank). When reviewing the content of popular health blogs, the following observations can be made: (i) both lay newspapers and health blogs fare poorly on reporting and discussing medical "news that matters." General interest blogs fare as well or better than general interest Canadian newspapers in reporting critical medical stories; (ii) only a small minority of popular health blogs demonstrate overt political partisanship or drug industry sponsorship; (iii) a minority of popular blogs contain prominent user privacy controls in keeping with best practices; (iv) a majority contain some general industry sponsorship; (v) a majority have semi- or full moderation by subject matter experts. Discussion: Health blogs offer promise in the delivery of engaged interaction for consumers seeking relevant health information. The findings suggest that such blogs are generally well-governed or monitored by subject matter experts and are free from politically partisan bias. Although improved user privacy protocols are necessary, there is little indication that these popular blogs contain personal health data that are linkable to any individual. Inside the Health Blogosphere: Governance, Quality and the New Opinion Leaders [4 Aud 1100 Seeman]<embed... | 8/27/09 | Free | View In iTunes |
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Social uses of personal health information within PatientsLikeMe<sup>TM</sup>, an online patient community: What can happen whe | Background: This project investigates the ways in which patients respond to the shared use of what is often considered private information: personal health data. There is a growing demand for patient access to personal health records. The predominant model for this record is a repository of all clinically relevant health information kept securely and viewed privately by patients and their healthcare providers. While this type of record does seem to have beneficial effects for the patient-physician relationship, the complexity and novelty of these data coupled with the lack of research in this area means the utility of personal health information for the primary stakeholders -- the patients-is not well documented or understood. Objective: PatientsLikeMe® is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition. We begin this paper by describing the components and design of the online community. We then identify and analyze how users of this platform reference personal health information within patient-to-patient dialogues. Methods: Patients diagnosed with amyotrophic lateral sclerosis (ALS) post data on their current treatments, symptoms, and outcomes. These data are displayed graphically within personal health profiles and are reflected in composite community-level symptom and treatment reports. Users review and discuss these data within the Forum, private messaging, and comments posted on each others' profiles. We analyzed member communications that referenced individual-level personal health data to determine how patient peers use personal health information within patient-to-patient exchanges. Results: Qualitative analysis of a sample of 123 comments (about 2% of the total) posted within the community revealed a variety of commenting and questioning behaviors by patient members. Members referenced data to locate others with particular experiences to answer specific health-related questions, proffer personally acquired disease-management knowledge to those who are most likely to benefit from it, and foster and solidify relationships based on shared concerns. Conclusions: Few studies examine the use of personal health information by patients themselves. This project suggests how patients who choose to explicitly share health data within a community may benefit from the process, helping patients engage in dialogues that may inform disease self-management. We recommend that future designs make each patient's health information as clear as possible, automate matching of people with similar conditions and using similar treatments, and integrate data into online platforms for health conversations. Keywords: personal health records; data visualization; personal monitoring; technology; healthcare; self-help devices; personal tracking; social support; online support group; online health community; Social Uses of Personal Health Information Within PatientsLikeMe (4 Aud 1000 Frost Massagli)<param name="movie" value="http://static.slideshare.net/swf/ssplayer2.swf?doc=4aud1000frostmassagli-1222290027287963-9&stripped_title=social-uses-of-personal-health-information-within-patientslikeme-4-aud-1000-frost-massagli-presentation"... | 8/27/09 | Free | View In iTunes |
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Medical Bloggers Panel | The Medical Bloggers' Panel aims to give deeper insight into medical blogging; why it is beneficial to maintain a medical blog and how one can start their own blogs. The Panel also plans to discuss the dangers web 2.0 can cause to medical professionals in the medical blogosphere and to present some medical blogging careers. Medical blogs allow the hospital, medical, and health/wellness management communities to build bridges to populations and individuals that have traditionally existed as the 'other' waiting in the wings - peoples at the periphery of medical practice, including patients. Blogs are communication vectors that, properly harnessed via distinctive voices, allow us to connect to diverse constituencies. These virtual conversations often move offline into the realm of practical, everyday strategy development, improving the overall practice of medical research and care delivery across an increasingly diverse and fragmented care continuum. Jennifer McCabe Gorman of Health Management RX (healthmgmtrx.blogspot.com) will discuss the role of medical blogs in terms of creating open lines of communication that allow the medical community to inexpensively cross - pollinate best practices from outside industries. Sam Solomon of the National Review of Medicine's editors' blog, Canadian Medicine (canadianmedicine.blogspot.com), will provide a Canadian perspective on medical blogging and discuss the question of anonymous authorship. Keith Kaplan of the Digital Pathology Blog (www.tissuepathology.typepad.com) will discuss the role of blogging about technologies and issues potentially disruptive to conventional practice in pathology. He will also explore applications blogs may have for a platform to share content beyond stories and ideas. Peter Murray from Health Informatics Blog (www.hi-blogs.info )will present experiences of developing collaborative models of blogging to support professional development, and discuss how such collaborative models could help support communities of practice for health professionals, patients and others. Bertalan Meskó from Scienceroll (www.scienceroll.com) will talk about the advantages and dangers of medical blogging through the story of his blog. He will also discuss the career and networking opportunities a medical blog can provide from a medical student's perspective. Medicine20 Bloggers MurrayView SlideShare presentation or <a... | 8/27/09 | Free | View In iTunes |
| Total: 59 Episodes |
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