Health 2.0 uses the principle tools of Web 2.0 like blogs, wikis, podcoasts, and YouTube to allow users to exchange information about health. It was initially intended as a forum for patients, caregivers and medical professionals. However, much of the content is currently generated by patients. To quote James Surowiecki, author of The Wisdom of Crowds, "Groups are remarkably intelligent, and are often smarter than the smartest people in them." This analogy can be applied to the groups of patients and caregivers who organize around a particular disease and its managment. When these groups share their observations, their collective wisdom can yield clinical insights well beyond the understanding of any single patient or physician.
This is not the first time that patients have formed groups to bring attention to a disease or health in general. Our Bodies, Ourselves, the book that brought women's health national attention in the 1970's, is in its 12th printing. Similarly, the AIDS activism movement educated the non-medical community about HIV. The Health 2.0 movement does this and more in part due to the technological developments of the last several years.
The executive summary of The Past and Future of Health 2.0, written by the Health 2.0 Advisors group explains Health 2.0 using these 4 points. (http://www.health2advisors.com/)
1. Internet use greatly expands the size of the group and audience
2. Easy-to-use software makes the Health 2.0 Web sites accessible
3. "User-generated content" is given validity
4. Health 2.0 provides answers and solutions to patients which are not only more relevant than those frrom traditional sources but also in some cases superior to those received from medical professionals
Health 2.0 Web Sites
Many 2.0 Web sites are commercially produced and because you are required to enter personal data, you need to register.
http://www.patientslikeme.com/
This was founded by Jamie Heywood when his brother, Stephen, was diagnosed with ALS (amyotropic lateral sclerosis). It now has over 45,000 registered users and has expanded to include 9 diseases.
http://www.epatientdave.com/
Dave deBronkhart was diagnosed with Stage IV, Grade 4 Kidney Cancer in January 2007. Before and during his treatment, he kept a journal and blogged extensively about the experience. He is very active in the e-patient movement.
ACOR
http://www.acor.org/
Association of Cancer Online Resources is one of the orginal social networks for patients. Started in 1995, it has a large collection of cancer-related Internet mailing lists. Some of the links on the page are broken although the site appears to be functioning.
e-Patients.net
http://e-patients.net/
This is the blog for the Society of Participatory Medicine.
Organized Wisdom
OrganizedWisdom.com
Commercial site that claims to be the first expert-guided search service for health. Search results are returned as Wisdom Cards.
Kease
http://www.keas.com
This site allows users to enter their health records or allow the service to retrieve their electronic medical record. Keas matches their health issues to channels that offer health care advice. A subscription is required and there is the opportunity to purchase different apps.
CureTogether
http://www.curetogethers.com
This site allows users to anonymously track and compare health data to better understand their bodies, make informed treatment decisions and contribute data to research.
If you know of other sites, please enter them on the "mother" blog.
Journals
These are two journals that deal specifically with Health 2.0 issues. There may be others. If you find others, please post them to the "mother" blog. Please browse through these journals.
Journal of Participatory Medicine
http://jopm.org
Open access and continuously published journal which got its start in December 2009. The first issue should be released in early 2010.
The Patient: Patient Centered Outcome Research
adisonline.com/thepatient
This journal began publication in 2008 and is published quarterly. Publishing partner is Johsn Hopkins Bloomberg School of Health. The first issue is free.
Data and Health 2.0
Health 2.0 Web sites have collected an amazing amount of data that could possible used in research. This is really the next direction of Health 2.0. Collecting and analyzing this data in some meaningful way to improve healthcare.
*Assignment*
1. Read this article, "Practicing Patients", about the history of Health 2.0 that uses PatientsLikeMe as an example.
2. Here is another article about PatientsLikeMe. It describes the importance of the data that can be collected from the many Health 2.0 Web sites. This article retells of their experience in using lithium to treat ALS (amyotropic lateral sclerosis).
How the Social Web Supports Patient Experimentation with a New Therapy: The demand for patient-controlled and patient-centered informatics
Address the following questions in your blog.
Did you get a better idea of the range of Health 2.0 Web sites by looking at the site? Is there anything in particular that bothered you about any of the sites? Is there anything you liked?
Health 2.0 Web sites continue to grow at an increasing rate. Will it become even more confusing for the patients?
What do you think of patient-entered data as a foundation for research and medical conclusions?
Should this type of "medical advice" be commercially driven?
Why did you chose this Thing?
How much time did you spend on this Thing?
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