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Moving with the web: what is the place for third party review in the age of web 2?
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Background: Despite progress that has been made over the last ten years, the reliability of online health-related information remains a concern. [1] The increasing popularity of social networking sites and other applications understood under web 2.0 has o
nly led to a renewal of such concern. [2] For example, information shared on blogs is considered too subjective; while the ability of the collective to correct mistakes in shared publishing formats (e.g.: wikis) is questioned. [3] New information exchange formats present new challenges to organizations that seek to point lay-end-users to quality web-based health information. Although review organizations try adapting to web developments, they currently utilize evaluation principles developed to assess static/less-frequently-changing websites. Where these organizations already face numerous challenges related to information review, they are now confronted with the insufficiency of current approaches for web 2.0. How do changes in web applications influence the role of third party reviewing organizations? Is a changed approach to reliability issues necessary?
Objective: This paper examines reliability issues related to the different applications that comprise web 2.0. It specifically addresses questions about the place for third party review in dealing with these issues.
Methods: Electronic surveys with open questions and blog discourse analysis were conducted. The surveys consisted of: web-based surveys conducted January-February 2008 with site providers from HONcode certified sites (n=33) and e-mail surveys conducted March-April 2008 with researchers and practitioners from different fields who share an interest in patient-centered web-based health information (n=9). The discourse analysis reflects the iterative nature of qualitative research. Because several researchers referred to “expert” web logs in their answers, these were also reviewed, to two degrees of separation (n=10). Individual blogs provide hundreds of pages of data; following blogs for one-three months provides a sufficient analysis base. [4]
Results: Understandings of web reliability are multiple. [1] Both sets of respondents and the blog authors reflected diverse concerns for both technical reliability and quality of content. Two common themes were increasing transparency of information production and guarding against explicit information manipulation (as opposed to mistakes) or technical abuse.
Site providers felt that web 2.0 was too new to comment on. They were unsure of the quality aspects of different applications but opined that current third-party certification is insufficient for dealing with subjective information that potentially changes daily. Those who advocated review felt that a shorter, more frequent review process (that concurrently examines content more in-depth) is necessary.
Researchers were arguably more familiar with reliability issues, but included a number of older applications not usually attributed to web 2.0. They were less concerned about the extremity of reliability issues and less enthusiastic about the idea of authoritative oversight of content, both of which are surprising.
Conclusions: The role for third parties depends on the audience. While researchers fail to see their effectiveness for end-users, site providers find them important, not for review, but rather for raising awareness and initiating dialogue. Respondents do not rule out third party review as a feasible practice, but feel it needs to be revamped.
References
[1] Adams SA. Under Construction: Reviewing and Producing Information Reliability on the web. Erasmus University Rotterdam; 2006.
[2] Tsai C, Tsai S, Zeng-Treitler Q, Liang B. Patient-Centered Consumer Health Social Network Websites: A Pilot Study of Quality of User-Generated Health Information. Proceedings of the AMIA Annual Symposium. 2007.
[3] Keen A. The Cult of the Amateur. The cult of the amateur: how today’s internet is killing our culture. New York: Doubleday; 2007
[4].Herring SC, Scheidt LA, Bonus S, Wright E. 2005. Weblogs as bridging genre. Information, Technology and People 2005;18(2): 142-171. [ ^ Minimize ]
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Preventive Medicine and the Allen Behavioral Change Model: A Collaboration for Health Behavior Change Using Web-based Interventions
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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, an
d 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. [ ^ Minimize ]
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Planning the Development of the Singapore National Health Portal
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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 co
mpetitive 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.
Conclusion:
The experience of planning the development of the Singapore NHP will be valuable for other countries that are considering a similar strategy to support AHM within the population. [ ^ Minimize ]
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“Web site specializing in the intensive care unit of the Santa Clara Hospital”
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RESULTS
This project relies on the cooperation of the intensive care unit (ICU) of the Santa Clara Hospital and research group in telemedicine at the “Universidad Distrital Francisco José de Caldas” (GITEM), is notorious clarify that these two entities
have already worked on large projects, Which is why there is great cooperation by both in developing this new challenge.
The development of the Projects has two Big Marcos: one of Technological Development and the other about Analysis and Prospective of growth of the Telemedicine in Colombian. Within the results of this project is the medical staff Sensitization for use the (TIC's) in order to contribute to technological development of the health sector in Colombia. [ ^ Minimize ]
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Providing Online Access to Point-of-Care Information: Lessons from the OntarioMD.ca Physician Portal
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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. [ ^ Minimize ]
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Factors Affecting Actual Individual Usage of Electronic Patient Records In Three Developing Countries of The Middle East; Lebanon, Jordan and Syria
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Title
Factors Affecting Actual Individual Usage of Electronic Patient Records In Three Developing Countries of The Middle East; Lebanon, Jordan and Syria
Dr. Hala Badredine, Dr. C.R. Stevens
Abstract
All conferences’ proceedings of the latest
EMRO-WHO have recommended amelioration of actual individual usage of Electronic Patient Record (AIU-EPR) and E-health in the Middle East for a better future. To begin, how can we apply these recommendations without knowledge of basic E-health and Electronic Patient Records /Electronic Health Records (EPR/ EHR) status in countries under study? This study provides an exploratory database of factors influencing usage and adoption in The Fertile Crescent; three developing “Water-People” countries, namely The Republic of Lebanon, The Kingdom of Jordan and The Arabic Syrian Republic. No research or study has yet explored and established matters concerning health care managers’ attitudes, habits, involvement, development, technical readiness and accessibility towards AIU-EPR.
The main dependent variable AIU-EPR refers to the number of hours per week EPR -supported functions are used among functions performed in a hospital department. This research tests four independent variables with their own observed variable loadings affecting the one dependent variable AIU-EPR, as follows.
1. The relationships between individual characteristics and AIU-EPR. Age, sex and education are taken as the exogenous or upstream variables affecting the mediating dependent variable, individual personality characteristic (Indivpers). While, individual personality characteristic is also considered, at the same time, according to the structural equational modeling and regression theory (SEM) model-1 an exogenous variable for the endogenous main dependent variable AIU-EPR.
2. The relationships between individual organisational characteristics and AIU-EPR. Centralisation of decision making, communication and technical readiness in a health care organisation are considered to be the upstream variables to the downstream variable individual organisational characteristics (Indivorg). On the other hand, the Indivorg variable is considered the upstream variable affecting the main dependent downstream variable AIU-EPR.
3. The relationships between Attitudes and Habits of health care professionals and AIU-EPR. Attitudes toward involvement, attitudes toward development, awareness of accessibility and hospitals’ departmental needs for EPR usage values are considered to be the upstream variables to the downstream variable Attitudes and Habits (Attitudhab). At the same time Attitudhab as considered the upstream variable affecting the main dependent downstream variable AIU-EPR.
4. EPR Usefulness as the last exogenous variable affecting the mediating the dependent variable AIU-EPR.
Data collection was performed using a questionnaire and on-site interviewing of hospital and Ministry of Health managers. One thousand managers from 100 hospitals in the three countries were interviewed personally by the researcher. Multivariate general hypotheses are proposed and tested simultaneously through structural equational modelling and regression on different levels using AMOS version 7 and SPSS version 15.
As expected the results confirm that the cultural and political environment in each country affected the outcome of this study in relation to all factors analysing AIU-EPR. Irrespective of country specific variation, the findings also reveal that organisational factors contribute to a greater degree in understanding AIU-EPR than the individual characteristics. Moreover, attitudes of professionals play important roles in explaining AIU-EPR. However, there is strong evidence of a “halo” effect (Nisbett R., 1980) between individual characteristics and AIU-EPR at this early stage of AIU-EPR in the Middle East leading to exaggerated perceptions of actual usage. Additional findings appear in the text and implications are considered for researchers and policy makers. This research lays the groundwork and presents exciting possibilities for conducting more detailed actual individual usages of EPR studies and cross-national comparisons of innovations especially in the legal, ethical, political, and cultural arenas. [ ^ Minimize ]
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Sexual Health Online: Young People’s Views
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Introduction
Young people are at particular risk of poor sexual health [1]. The Internet offers easy access to sexual health information, but it is known that information alone does not reduce risky behaviour [2]. In contrast, tailored and interactive we
bsite designs may be better at enhancing learning and encouraging behaviour change [3].
Methods
We conducted five focus groups with 25 young people aged 15 to 25 in London UK, to ask their views on the feasibility and appeal of computer-based sexual health promotion. We used a semi-structured topic guide and accessed sexual health websites in the group to stimulate discussion. We audio-taped the discussions, transcribed them, and analysed transcripts thematically with the help of Atlas.ti software for qualitative data analysis.
Results
Focus group participants (15 young women and 10 young men from diverse ethnic and religious backgrounds) said that they access the Internet frequently and that sexual health is interesting and relevant for them. Schools often have Internet blocking software, but participants had generally unrestricted access at home or friends’ houses. Young people would like programme content to be tailored for people their age, gender and sexuality, and they like to see people like themselves on websites. They preferred formats such as video, animation, and interactive scenarios rather than text-based web content.
Young people (especially young women) were concerned about unwanted pregnancy, sexually transmitted infections and unsatisfactory relationships. Learning through experience and face-to-face advice was important to focus group participants. However, a computer programme could address a variety of sexual health issues such as myths (e.g. being able to tell who is ‘clean/unclean’); dilemmas (e.g. ambivalence about condom use); peer pressure and gendered expectations; relationships (e.g. recognising respectful relationships); communication and negotiation skills; and influence of alcohol and drugs on sexual risk-taking for example.
Discussion
We have established that a computer-based application for sexual health is feasible, but needs to be entertaining and linked with websites popular with young people. Drawing on young people’s views and principles from educational and psychological theory [4], an internet intervention needs to be engaging, tailored, interactive, motivating and skill-building. We are convening a young people’s panel to help develop a programme and evaluate it in an online randomised controlled trial.
References
1. UK Department of Health. The National Strategy for Sexual Health and HIV. London, DH. 2001.
2. Stephenson JM, Imrie J, & Bonell C. Effective Sexual Health Interventions. Issues in experimental evaluation. Oxford University Press, Oxford, New York; 2003
3. Hardin PC, Reis J. Interactive multimedia software design: Concepts, process, and evaluation. Health Education & Behavior 1997; 24(1):35-53.
4. Wight D, Abraham C, Scott S. Towards a psycho-social theoretical framework for sexual health promotion. Health Education Research 1998; 13(3):317-30. [ ^ Minimize ]
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RNAO eChampion Program
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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 suppor
t 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. [ ^ Minimize ]
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The use of Web 2.0 in teaching Medical Informatics to postgraduate medical students: first experiences
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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. Th
e 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. [ ^ Minimize ]
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Development of an RSS-based Current Awareness Service
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Increasingly, journal vendors are making content available via RSS feeds, but barriers still exist between the user and the content. Inspired by the FeedNavigator, a project of the National Library of Health Sciences-Terkko, we set out to develop a tool t
hat would allow our patrons to easily locate and subscribe to journal feeds. Using a blog and a wiki for staff communication and project management respectively, we created tools that allowed the 6 members of our group to quickly capture and classify feeds for over 1,900 journals. Journal feeds are now available from our site, individually and in bundled, exportable packages (OPML files). Users can locate feeds alphabetically or by subject and can preview tables of contents before subscribing to a feed. Comprehensive bundles of feeds are offered along with select bundles of \\\'\\\'best bets\\\'\\\' titles. [ ^ Minimize ]
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To 2.0 or not to 2.0 – have junior doctors already answered the question?
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Background: Use of Web 2.0 by doctors has been demonstrated by surveys both in the UK [1] and the US [2]. Furthermore, many authors have called for a wide awareness of these technologies and further research into their use [3]. However despite this rese
arch, the surveys only indicate use over extended time frames, and we have little understanding on if and how this impacts daily clinical practice
Objective: This paper aims to determine the impact of Web 2.0 in daily clinical practice in the UK, understanding its frequency of use, both absolute and in comparison to traditional internet resources aimed at doctors
Method: A sample of 30 ST1-level (2 years post registration) UK NHS doctors across a range of specializations recorded a daily diary of internet use over a week. The sample was selected from London medical schools graduate cohort. The selection of junior doctors at the ST1 grade was deliberate, based on the fact that research has shown that use of Web 2.0 decreases with a doctor’s seniority [2]. This paper seeks to provide a potential vision of how doctors will use Web 2.0 going forward through their training. Diaries were selected as a method for their effectiveness in examining use of time and collecting data from the perspective of the participant [4]. In addition, participants took a survey of attitudes to Web 2.0 technologies as completed in previous surveys [1] to determine any bias in the sample.
Results: Early results indicated that Web 2.0 tools are more widely used than other internet tools (53% of total internet use) with on average being used 2 out of every 5 days. Wikipedia was the most popular tool, representing 20% of total internet use being used by 79% of users. This was followed by Google at 15% of total internet use. 83% of respondents indicate that their use of these tools was due to being able to find relevant information more efficiently than other sources (internet resources of reference books in the ward or clinic). Significant differences in attitudes to technology between this sample and larger young doctor populations examined in other surveys could not be established.
Conclusion: A sample of 30 doctors cannot be taken as representative of the whole population of young UK doctors or UK doctors in general, but it suggests that adoption is beyond that noted by previous research. This supports the academic literature that has identified the potential of Web 2.0 resources to clinical practice [5]. Furthermore, as noted by Web 2.0 definitions, users can rapidly decide if tools are useful or not driving adoption more than organization policies or promotion of tools. Have junior doctors already answered the question, to 2.0 or not to 2.0?
Key words
Medicine 2.0, clinical practice
References
1.Sandars J, Schroter S. Web 2.0 technologies for undergraduate and postgraduate medical education: an online survey. Postgrad. Med. J. 2007;83;759-762. doi:10.1136/pgmj.2007.063123. PMID: 18057175
2.Manhattan Research, LLC. White Paper: Physicians and Web 2.0: 5 Things You Should Know about the Evolving Online Landscape for Physicians. 2007. URL: http://www.manhattanresearch.com/TTPWhitePaper.aspx on 20/1/2008
3.Potts HW. Is e-health progressing faster than e-health researchers? J Med Internet Res. 2006;8(3):e23 PMID: 17032640
4.Easterby-Smith, Thorpe, Lowe. 2002. Management research: An Introduction. Sage:London
5.McLean, R, Richards, B, Wardman, J. The effect of Web 2.0 on the future of medical practice and education: Darwikinian evolution or folksonomic revolution? MJA 2007; 187 (3): 174-177. PMID: 17680746 [ ^ Minimize ]
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Using Web 2.0. tools on health Websites in Spanish
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Objetive. To evaluate the use of Web 2.0 tools on health websites in Spanish.
Methods. We conducted a descriptive study on the tools of Web 2.0. used by health websites. We review 39 websites on general health in Spanish, and 32 Web sites of speci
fic areas (including allergy, infectious and parasitic diseases, digestive system, endocrine system, nutrition, metabolic diseases, circulatory system, apparatus genito-urinary, respiratory, mental illness, musculoskeletal system and connective tissue, nervous system, rare diseases, back, older and disabled, women\\\\\\\\\\\\\\\'s health, perinatal health, tumors and vaccines). Websites were selected in a previous study. We analyzed the following dimensions (Cobo-Romany 2007): Social Networking (Forums, Communities), content management (Blogs, Wikis, space for comments and opinions), Social organization of information (RSS, bookmarkings, informative panels) and applications and services (podcasting, webcasting).
Results. Social networking. 31% of all health websites in Spanish has used social networking tools, including forums with specific applications developed for each site. Content Management System (CMS): The tools designed to create and manage content on the health websites are scarce being used in less than 10% of all; Blogs = 5, Wiki = 1, Comments and opinions = 7 . Social organization of information: The RSS feeds are the most widely tool used on Web sites evaluated (25%), on bookmarkings, there are 6 Websites that let you share its contents employing various open management services as Del.icio.us, Digg, Technorati, among others. There are 9 websites that use information panels. Only two Websites of media used all the tools. Applications and services. Only 13% of Websites evaluated offer the ability to play or download audio and video (Podcasting and webcasting).
Conclusions. Websites with health information in Spanish have not yet migrated to the Web 2.0. The media are the websites that most have used the tools of Web 2.0. [ ^ Minimize ]
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E-epidemiology – adapting epidemiological data collection to the 21st century
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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 Swe
des, 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 participate. Am J Epidemiol 2003;157:66-73.
6. Sax LG, SK; Bryant, AN. Assessing response rates and nonresponse bias in Web and Paper surveys. Reaserch in Higher Education 2003;44:409-432.
7. Mundt JC, Moore HK, Bean P. An interactive voice response program to reduce drinking relapse: A feasibility study. J Subst Abuse Treat 2006;30:21-9.
8. Fricker S, Galesic M, Tourangeau R, Yan T. An Experimental Comparison of Web and Telephone Surveys
10.1093/poq/nfi027. Public Opin Q 2005;69:370-392.
9. Brick JM, Brick PD, Dipko S, Presser S, Tucker C, Yuan Y. Cell phone survey feasibility in the U.S.: Sampling and calling cell numbers versus Landline numbers. Public Opin Q 2007;71:23-39.
10. Ekman A, Litton JE. New times, new needs; e-epidemiology. Eur J Epidemiol 2007;22:285-92.
11. ITU/UNCTAD 2007 World Information Society report: Beyond WSIS. In: (ITU) ITU, ed. Geneva: International Telecommunication Union (ITU), 2007:1-175.
12. Ekman A, Dickman PW, Klint A, Weiderpass E, Litton JE. Feasibility of Using Web-based Questionnaires in Large Population-based Epidemiological Studies. Eur J Epidemiol 2006;21:103-11. [ ^ Minimize ]
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Patient Problem-Solving on the Web: How do Patients Use Web Forums to Cope with Chronic Disease?
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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. [ ^ Minimize ]
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Personally Tailored Health Information: A Health 2.0 Approach
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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 m
eans 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. [ ^ Minimize ]
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Stop The World wide web I Want To Get Off.
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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. Rev
iews 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. [ ^ Minimize ]
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Medicine 2.0 and Medical Faculty Development
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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 u
rban 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. [ ^ Minimize ]
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Using Wiki for a Large Medical Nomenclature Translation
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We report ongoing research on terminology and Open source software in Healthcare. We describe a collaborative environment for translating SNOMED-CT to portuguese. MediaWiki was used as the first implementation, but alternatives are being analyzed. Discuss
ions about the pros and cons of adopting this solution in a nationwide effort to adopt international standardized nomenclatures are presented. We discuss the importance of Terminologies for interoperability and its relations to Classifications, Ontologies and Archetypes.
The collaboration process needs a hierarchical structure, not the usual, democratic wikipedia approach. An account manager has to allow incoming translators to enter one or more medical subareas. Each subarea (eg. ophthalmology) has a senior participant with power to determine which is the best translation to portuguese, or which are the acceptable translations, for each SNOMED concept. This responsability may be transferred to some of the other participants by this senior one. The regular partipant has only the power to suggest new translations. [ ^ Minimize ]
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Where can teens find health information? A survey of web portals designed for teen health information seekers
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The Web is an important source for health information for most teens with access to the Web (Gray et al, 2005a; Kaiser, 2001). While teens are likely to turn to the Web for health information, research has indicated that their skills in locating, evaluati
ng and using health information are weak (Hansen et al, 2003; Skinner et al, 2003, Gray et al, 2005b). This behaviour suggests that the targeted approach to finding health information that is offered by web portals would be useful to teens.
A web portal is the entry point for information on the Web. It is the front end, and often the filter, that users must pass through in order to link to actual content. Unlike general search engines such as Google, content that is linked to a portal has usually been pre-selected and even created by the organization that hosts the portal, assuring some level of quality control. The underlying architecture of the portal is structured and thus offers an organized approach to exploring a specific health topic.
This paper reports on an environmental scan of the Web, the purpose of which was to identify and describe portals to general health information, in English and French, designed specifically for teens. It answers two key questions. First of all, what portals exist? And secondly, what are their characteristics? The portals were analyzed through the lens of four attributes: Usability, interactivity, reliability and findability. Usability is a term that incorporates concepts of navigation, layout and design, clarity of concept and purpose, underlying architecture, in-site assistance and, for web content with text, readability. Interactivity relates to the type of interactions and level of engagement required by the user to access health information on a portal. Interaction can come in the form of a game, a quiz, a creative experience, or a communication tool such as an instant messaging board, a forum or blog. Reliability reflects the traditional values of accuracy, currency, credibility and bias, and in the web-based world, durabililty. Findability is simply the ease with which a portal can be discovered by a searcher using the search engine that is most commonly associated with the Web by young people – Google – and using terms related to teen health. Findability is an important consideration since the majority of teens begin their search for health information using search engines (CIBER, 2008; Hansen et al, 2003). The content linked to by the portals was not evaluated, nor was the portals’ efficacy as a health intervention.
Teens looking for health information on the Web in English have a wide range of choices available but French-language portals are much rarer and harder to find. A majority of the portals found and reviewed originated from hospitals, associations specializing in a particular disease, and governmental agencies, suggesting that portals for teens on health related topics are generally reliable. However, only a handful of the portals reviewed were easy to find, suggesting that valuable resources for teens remain buried in the Web.
Attendees will be provided with a comprehensive list of portals to general health information, in English and French, designed specifically for teens. [ ^ Minimize ]
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Usage of Semantic Web Technologies (Web-3.0) Aiming to Facilitate the Utilisation of Computerized Algorithmic Medicine in Clinical Practice
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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 clinica
l 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 [ ^ Minimize ]
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How can patients unlock the potential of Health 2.0?
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Providing patients with community resources and social supports to cope and manage their chronic conditions is an essential component of chronic disease management best practices.
With Health 2.0 technology, “community resources” and “social supports”
can now be virtual as well as physical entities. With Health 2.0, users can generate content easily and interact readily with individuals from around the world in virtual communities or broader social networks. These advances are changing the way patients and healthcare professionals interact with one another and how patients learn about and manage all aspects of their chronic conditions.
However, with the millions of websites, communities and resources on the web – there are 50 million web pages the contain the words “health” and “community” – how do patients navigate through these millions of web pages to find and evaluate the Health 2.0 resources and virtual communities that fit their needs?
For our study, we propose to use the analogy of a prospective home buyer to identify characteristics used to identify a location (community) within which to live and in purchasing a home (content/structure). Using this analogy as a foundation for a broader framework, we will review the literature on step by step approaches individuals can use to find a web community. We will also review the literature on criteria individuals can employ to ensure that community has the appropriate content and structure.
Building upon the findings from the literature and using the perspective of a patient, we will develop a framework that patients can use to find and evaluate Health 2.0 resources. To assist in testing the validity and applicability of the framework, we will develop patient scenarios. Scenarios will be based on patients with chronic conditions looking to find an appropriate web community or social network.
We will describe our findings from the patient scenarios and present a refined framework that can inform other initiatives on this topic and recommend an approach for patients to find and evaluate web communities and social networks
References
Blanchard, A. L. (2007). Developing a sense of virtual community measure. Cyberpsychology & Behavior, 10(6), 827-830.
Demiris, G., Afrin, L. B., Speedie, S., Courtney, K. L., Sondhi, M., Vimarlund, V., et al. (2008). Patient-centered applications: Use of information technology to promote disease management and wellness. A white paper by the AMIA Knowledge in Motion Working Group. Journal of the American Medical Informatics Association, 15(1), 8-13.
Leimeister, J. M., & Krcmar, H. (2006). Community-engineering - Systemic design and operation of virtual communities in healthcare. Wirtschaftsinformatik, 48(6), 418-429.
Mansourian, Y. (2008). Coping strategies in web searching. Program-Electronic Library and Information Systems, 42(1), 28-39.
Sarasohn-Kahn, J. (2008). The Wisdom of Patients: Health Care Meets Online Social Media [Electronic Version]. iHealthReports, 28. Retrieved April 2008 from http://www.chcf.org/topics/chronicdisease/index.cfm?itemID=133631, archived at http://www.webcitation.org/5XWMxS6Nk. [ ^ Minimize ]
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MDPIXX: The Global Medical Images Repository
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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 institutio
n 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. [ ^ Minimize ]
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Virtual Health Platform
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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. [ ^ Minimize ]
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The potential of social computing for biomedical research on rare diseases
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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 bet
ween 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). [ ^ Minimize ]
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Using Technology to Engage Patients and Clinicians in Electronic Cancer Symptom Assessment and Management: Lessons Learned and Implications for Practice
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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 a
nd 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. [ ^ Minimize ]
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InfoWell Patient Portal: A Case of Patient-Centred Design
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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 t
o 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. [ ^ Minimize ]
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Who Cares, Wins: Scenarios, Medicine and the Semantic Web
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Are Scenarios dead? Does the Semantic Web have any plausible futures? How can disparate strategy crafting processes deal with uncertainties across boundaries? This paper seeks a coherent narrative to build systemic tools for value creation from medical an
d healthcare information. [ ^ Minimize ]
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A graphical health report constructed as a KIDMAP
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Imaging a patient submitting his/her health (body) examination report to a medicine 2.0 website following the 3 steps as : (1) selecting those options as gender, age, race, body mass index (BMI) etc.; (2) assigning a nominated doctor to request interpreta
tions; (3) specify whether there is some urgency in getting a consultation from the doctor. We can compare this to how authors to the JMIR OPEN ACCESS journal submit their manuscripts by the steps of (1) selecting the appropriate section for this submission; (2) nominating 2-4 external referees to review their manuscripts; (3) deciding whether the submission should be fast-tracked.
An immediate diagnostic diagram of health information will be generated once the payment is completed. The consultation will be arranged later depending on the patient’s choices of talking with a doctor or a fast-track service.
We use the acronym USERS to refer to Web 2.0 features of Unconstraint, Service, Externality and Reward. We introduce a proposed graphical diagnostic map for the requested output after submitting a self-scoring health report.
How health items online gathered through item response theory (IRT) analysis can be used to give immediate diagnostic information is explained. The KIDMAP, developed by B. D. Wright (1980), provides clear information in a visual manner. We developed an internet module to construct a KIDMAP. Different kinds of “test banks” for different groups by gender, age, race, and BMI are ready for selection by patients and immediately respond to an appropriate KIDMAP for detecting which items are unusual compared to the norm reference of the respective “test item bank”. Like tester’s items that would normally be placed in correct and incorrect columns on a KIDMAP are put on either side of the interval continuum underlying scale for interpreting the health performance, which can give a quick understanding of the measured health latent trait for every respondent, based solely on raw score of the endorsed submission. A brief outline of the use of KIDMAP can make Medicine 2.0 with IRT online analysis more pertinent to the Web 2.0 USERS alike.
We developed a 21-item inventory of health examination, which can online investigate examinee health status and present any difference beyond expectation. One parameter IRT model’s Rasch analysis was applied to analyze dimensionality, differential item functioning (DIF), distribution of health ability and item difficulty, and group gentle difference. The KIDMAP illustrated in this study shows the results of online submission of health examination items and the possibilities of related diseases such as osteoporosis or gout on internet.
Of the 21 items, 10 exhibited DIF on gender, which indicates that “test bank” for different groups should be separately set up. The internet module developed for health self-scorings requesting KIDMAP only or/and online talk to a doctor with or without fast-track service could be useful for USERS-like Medicine 2.0. [ ^ Minimize ]
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