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Empowering Health 2.0 Social Networks                                      

According to its website, www.PatientsLikeMe.com was founded in 2004 by three MIT engineers whose collective experience spanned from running the world’s only non-profit biotechnology laboratory – to large scale online commerce applications. Today, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases.

A Personally Generated Idea

A personal experience with ALS [Amyotrophic Lateral Sclerosis] – Lou Gehrig’s Disease – was the inspiration to create this on line social community of patients, doctors and organizations that informs and empowers individuals. The firm has committed to providing patients with access to the tools, information and experiences they need to take control of their disease. Currently, it has signed-up 23,000 participants and membership is growing 35% per month.

The Promise

The promise of PatientsLikeMe is to provide a better, more effective way to capture valuable information and share it with patients, healthcare professionals and industry organizations trying to treat the disease.

The Goal

To reach its goals, the site created an internet based platform for collecting and sharing real world, outcome-based, patient data and is establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profit organizations. And, since the HIPPA statutes don’t mute patients themselves, a regulatory escape clause – of sorts – enables the virtual dialog.

Cost Coverage

Operating costs are covered by partnerships with healthcare providers that use anonymous data from, and permission-based access, to the PatientsLikeMe community to drive treatment research and improve medical care. The site shares anonymous data with trusted partners and all patient information is kept safe and secure [to the extent possible].

Assessment

Traditionally, physicians, organized medicine and groups like the ALS Association [ALSA.org] assumed [or abrogated] the role of treatment and thought leadership in niche spaces like this. But, the social networking phenomenon, known as Health 2.0, could fundamentally change the practice and business model of all medicine. For example, related concept models include:

*SugarStats.com for diabetics,
*Oncolink.com for cancer patients,
*Eurodis.org for rare diseases,
*Vitals.com to rate physicians,
*Trusera.com for general medical information sharing, and
*Disaboom.com for the disabled; etc

And, many more demonstrate the growing trend of patient empowerment.

More info: Business Week, page 58, December 15, 2008.

Conclusion

What do you think? Let us know with a post, opinion or comment on this topic; either as a doctor, patient, payer, employer, economic or financial advisor, politician or healthcare social engineer.

Speaker: If you need a moderator or speaker for an upcoming event, Dr. David E. Marcinko; MBA – Publisher-in-Chief of the Executive-Post – is available for seminar or speaking engagements. Contact: MarcinkoAdvisors@msn.com or Bio: www.stpub.com/pubs/authors/MARCINKO.htm

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Filed under: Information Technology, Managed Care, Research & Development | Tagged: health 2.0, Patients like Me |