Although you may not realize it, you have become part a real open data movement that is becoming the source of growing study and interest: the e-patient revolution! The old model of the passive patient who accepts their doctor’s recommendations is giving way to the new, involved patient who is increasingly educated about their disease and discusses options intelligently with their doctor [1].
An e-patient is a health consumer who participates fully in his/her medical care. Sometimes referred to as an “internet patient,” e-patients see themselves as equal partners with their doctors in the healthcare process. E-patients gather data about medical conditions that impact them and their families, using electronic communication tools (including Web 2.0 tools) in coping with medical conditions [2].
According to the current knowledge, Medical online support groups have become an important healthcare resource and e-patients can have a significant impact on the healthcare system and the quality of care received [3].
A great example of e-patient is Dave deBronkart ,also known as “e-patient Dave” who was diagnosed in January 2007 with kidney cancer at a very late stage. But through searching and demanding to access more detailed medical data, he was able to fight through and win the battle over his cancer. His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease [5].
There is a compelling TED Talk from him “Let Patients Help” which was in the top half of most-watched TED talks for a long time.
He is now so dedicated to opening up healthcare information and medical to patients on an unprecedented level and the part digital health is playing in the revolution. He wants patients to help themselves by owning their medical data in an open knowledge context [6].
I believe this will create a new dynamic in how information is delivered, accessed and used by the patient. Interestingly, he will be one of the international keynote speakers in Digital | Health 2014 conference in Stockholm 25-26 August. You can read an interesting interview with him here (http://www.digitalhealthdays.se/news/digital-health-and-the-e-patient-revolution).
Let us know what you think about the e-Patient revolution and the availability of data to patients! What approach(es) do you suggest to take this further?
References:
[1] http://cancergrace.org/general/2009/02/01/e-pt-revolution/
[2] Masters K, Ng’ambi D, Todd, G (2010). “”I Found it on the Internet:” Preparing for the e-patient in Oman”. SQU Med J 10 (2): 169–179. doi:10.3923/jms.2010.169.175
[3] Feder, Judith; Sands, Daniel Z. (2008-02-25). “A Reader and Author Respond to “ePatients: Engaging Patients in Their Own Care””. Medscape Journal of Medicine 10 (2): 46. ISSN 1934-1997. PMC 2270894
[4] http://e-patients.net/
