the international council on medical & care compunetics


December, 2014

support groups

Sharing Health Data for Better Outcomes on PatientsLikeMe

Wicks P et al, J Med Internet Res, 12(2)

PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”
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14 June 2010 | No Comments »
Categories: Bibliography, Journal Article | Keyword(s): , , , , , ,

What I’ve learned from E-patients

Hoch D, Ferguson T, PLoS Medicine, 2(8)

As a neurologist subspecializing in epilepsy at a respected academic institution, I (DH) assumed that I knew everything I needed to know about epilepsy and patients with epilepsy. I was wrong.
In September of 1994, John Lester, my colleague in the Department of Neurology at Massachusetts General Hospital, showed me an online bulletin board for neurology patients that he had created [1]. In reading through the online messages, I observed hundreds of patients with neurological diseases sharing their experiences and discussing their problems with one another.
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17 May 2010 | No Comments »
Categories: Journal Article | Keyword(s): , , , , , , ,

Individuals with eating disorders and the use of online support groups as a form of social support

McCormack, Abby, Computers, Informatics, Nursing, 28(1)

The increase in Internet use in recent years has fostered the development of online support groups to help individuals cope with a number of conditions. Individuals with eating disorders may particularly benefit from such groups as they provide a means of sharing experiences, knowledge, and support with like-minded individuals without the anxiety and worry of others negatively evaluating their appearance. The aim of this study was to examine the nature and types of social support that took place on an anorexia discussion forum.
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6 December 2009 | No Comments »
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Opportunities and challenges of Web 2.0 within the health care systems: An empirical exploration

Lupiáñez-Villanueva, Francisco et al, Informatics for Health and Social Care, 34(3)

The Internet has become one of the main drivers of e-health. Whilst its impact and potential is being analysed, the Web 2.0 phenomenon has reached the health field and has emerged as a buzzword that people use to describe a wide range of online activities and applications. The aims of this article are: to explore the opportunities and challenges of the Web 2.0 within the health care system and to identify the gap between the potential of these online activities and applications and the empirical data.
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10 August 2009 | No Comments »
Categories: Journal Article | Keyword(s): , , , , , , ,

Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions

Eysenbach, Gunther et al, BMJ, 328(7449)

To compile and evaluate the evidence on the effects on health and social outcomes of computer based peer to peer communities and electronic self support groups, used by people to discuss health related issues remotely.
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17 December 2008 | No Comments »
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Experience-based Information: The Role of Web-based Patient Networks in Consumer Health Information Services

Scola-Streckenbach, Susan, Journal of Consumer Health On the Internet, 12(3)

The prevalence of Web-based patient networks creates a substantial need for health information professionals to consider the qualities of such patient-mediated communities.
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8 September 2008 | No Comments »
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Self-Reported Differences in Empowerment Between Lurkers and Posters in Online Patient Support Groups

van Uden-Kraan, Cornelia F. et al, J Med Internet Res, 10(2)

Patients who visit online support groups benefit in various ways. Results of our earlier study indicated that participation in online support groups had a profound effect on the participants’ feelings of “being empowered.” However, most studies of online patient support groups have focused on the members of these groups who actively contribute by sending postings (posters). Thus far, little is known about the impact for “lurkers” (ie, those who do not actively participate by sending postings).
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21 July 2008 | No Comments »
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