Internet Medicine Part IV: “Health 2.0.”

“Health 2.0” or “Medicare 2.0” relates to a new paradigm in the relationship between patients and physicians, in particular the application of Web 2.0 interconnectivity tools or social media technology to the provision of health care.  One of the ironies of this movement is the emphasis on sharing rather than protecting or hiding health care information.  The www.patientslikeme.com  website sponsors  patients as partners with their physicians in assembling and sharing information related to specific diseases.  Patientslikeme assembles and aggregates patient information related to 5 chronic illness categories: Amyotrophic Lateral Sclerosis (ALS); Parkinson’s Disease, HIV/AIDS, Multiple Sclerosis and Mood Disorders.  Participants share treatment experiences, drug side effects, new treatment regimens and even organize and participate in their own clinical trials. 

Recently members organized their own test of the drug, Lithium for ALS to address results of a limited Italian study.  Last year Patientslikeme unveiled a new Genetic Search Engine service for the sharing of phenotypes of genetic mutations related to ALS [A4V or D90A mutations in superoxide dismutase (SODI) and the P565 mutation in vesicle associated membrane protein – associated protein B (VAPD) to be specific].

The internet provides roughly 59% of the health information for U.S. adults.  Physicians in the U.S. are not compensated for providing health information to their patients, yet patients are hungry for information about chronic diseases and conditions that afflict them, their families and their friends.  They now, more often than ever before, show up at their physicians’ offices armed with studies, reports and other data and related questions for which they want answers.  Physicians who feel comfortable with patient involvement in their health care may feel invigorated and challenged by Health 2.0.  Others, struggling to keep on top of accelerating mounds of information, dwindling reimbursement rates and rising expenses may find it intrusive if not overwhelming.

Physicians themselves have access to powerful biomedical databases such as PubMed (http://www.pubmed.gov) which is the public interface to the MEDLINE index, created by the National Library of Medicine, and other databases.  The service adds between 2000 to 4000 new citations to the database every day.  See MEDLINE: An Effective Guide to Searching in PubMed and Other Interfaces by Brian S. Katcher, Ashbury Press 2006.

Other new services focus on the delivery of health information to patients.  One site, www.Helia.com fancies itself as a personal health librarian for consumers, stressing personalized search results through the use of its algorithms that produce quality results for the needs of individual consumers.  Healthline.com provides a consumer search engine for health information in the Google or Yahoo mode except that it bridges (“Google meets WebMD”) the disconnect between consumer search language and medical taxonomy.  Vimo.com ( www.vimo.com ) provides a platform for comparison sharing for consumer health care products.

Then there is the Ix (“information therapy”) movement exemplified by Don Kemper’s Healthwise.com www.Healthwise.com.  These platforms help consumers to use interactive tools for health self management, virtual coaching, motivational interviewing and evidence-based behavioral change science to inspire people to commit to action plans for behavioral change.

These Health 2.0 sites proceed largely from the perspective that the fundamental principle behind HIPAA is flawed in the sense that as people gain more access to their health care data and personal knowledge about their conditions they are more likely to use social media to share that information and their experiences with others than to secrete and hide it.  That in turn is likely to put pressure on lawmakers at the state and national levels to modify HIPAA and state medical confidentiality statutes to lighten the restrictions on the sharing of medical information so as to enhance and support the development and dissemination of outcomes data, which is important to the improvement of future health care delivery.

Some electronic medical record (“EMR”) platforms such as www.MDBug.com have a business model that relies upon advertising and pharmaceutical company access to physicians and patients for revenue. It provides the service to physicians for free. the anticipated new regulations tightening up HIPAA regulations mandated by the American Recovery and Reinvestment Act due out by August 18, 2010, may seriously constrain this kind of non-traditional model.

Maybe so, but as long as we lack universal access to health care and the specter of employment and coinsurability discrimination based on personal health condition exists, the tension between privacy and social networking in the health arena will likely continue unabated.  The marketing potential for pharmaceutical firms, medical device companies, and medical product outfits has not gone unnoticed.  This opens up a whole new avenue for regulatory oversight potential by the FTC and the FDA and the application of legal and ethical standards in the advertising, promotion and sale of medical products online.

Then of course there is Twitter the miniblog service that answers the question of what are you doing now? (See www.twitter.com )  The healthcare potential of Twitter seems to be expanding daily.  Author Phil Bauman’s’ post on 40 Health Care Uses for Twitter ( http://philbaumann.com/2009/01/16/140-health-care-uses-for-twitter/) a number of Bauman’s’ uses seem vague or incomplete, but many seem reasonable and percipient.

For example, epidemiological surveys, diabetes management, drug safety alerts from the FDA, nutritional diary and tracking, disaster alerting and response, clinical trial, awareness, reporting medical device malfunctions, reporting adverse events to the FDA, etc.  Here again the confrontation between privacy and knowledge rears its head and may limit the utility of a Health 2.0 staple.  See Twitter, HIPAA, Privacy and Freedom of Speech.  (See http://philbaumann.com/2008/07/17/twitter-hipaa-privacy-and-freedom-of-speech/)

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Comments

[Stephen Schimpff, MD]

Patients have a distinct disadvantage in that there is a knowledge and information imbalance with their physicians. In an acute or emergent setting, one simply has to accept the doctor’s recommendations, perhaps asking questions but without time to cross check. But with chronic illnesses, such as some you refer to, there is time to do your own research and come to the doctor’s office armed with data. The Internet offers a wealth of information but unfortunately, the patient generally cannot tell what is valid and what is not. So it is important to use high quality sites such as those of the National Institutes of Health or those of major medical centers. A second important step, especially since we do not yet have universal electronic medical records, is to always get copies of your personal medical record after every physician visit, lab test or X-ray. Keep these handy and if you need to see a specialist, bring them along. It will save time, make for a better consultation and probably save you from having repeated tests or scans. In the Future of Medicine – Megatrends in Healthcare I suggest that within ten years we will have completely digitized medical records, available anytime, anyplace. Until then, it is up to us to maintain that file for ourselves.

[Clinical Trial Regulations]

Good post... Thanks......

[Clinical Trial Regulations]

Thanks for this post.......

[EMR Medical]

Thanks for the sharing this information...