This week, I watched Dave deBronkart’s presentation on TED Meet e-Patient Dave and as a result read a great deal about how patients are using social networking to heal. This presentation, along with new research recently released by Patients Like Me, is forging a whole new path in health care that is being driven my patients. While I have been a major advocate for both patient empowerment and the usefulness of belonging to a support group, social networking provides a very useful tool for people living with chronic and/or life threatening conditions.
Dave deBronkart explains how a stage 4 diagnosis of kidney cancer put him in the driver’s seat of his health care. Thanks to a social networking site recommended by his doctor, he was able to find an effective treatment. Before he went to the ACOR (Association of Cancer online Resources) he was reading “content” sites that were offered by organizations like the American Cancer Society, National Cancer Institute etc. However, none of these sites provided him with the information and support that has made it possible for him to be alive today.
In his talk, Dave says, Patients are such an underutilized resource. ….I've got somewhat know for saying that patients should have access to their data. And I actually said at one conference a couple of years ago, "Give me my damn data, because you people can't be trusted to keep it clean." There are a number of websites now where people can share their stories, as well as their data, in order to explore treatments and regiments that help them as well as other people they are on-line with.
Patients like Dave aren’t the only ones fueling this movement. Tom Ferguson, MD, has written about the “empowered medical consumer since 1975. In fact, he was the section editor for health, medicine and self-care for “The Whole Earth Catalogue.” He was also an early advocate for the development of on-line health resources and the new field of Health “Informatics.”
This past April, the website Patients Like Me published what is being called a “patient-initiated observation study” refuting a 2008 report that found the drug lithium carbonate could slow the progression of ALS (amyotrophic lateral sclerosis). PatientsLikeMe says it “developed a novel algorithm designed to match patients who reported taking lithium with a number of other ALS patients that had similar disease courses. By using a matched control group, PatientsLikeMe was able to reduce biases associated with evaluating the effects of treatments in open label, real world situations and improve the statistical power of the study making each patients contribution more meaningful.” The study included 149 patients on lithium, compared to 447 not taking the drug, says Paul Wicks, Phd., one of the study’s lead authors and the group’s director of research and development.
Obviously, this type of trial can’t match the potency of a double-blind, controlled clinical study, the gold standard. But, Wicks says, this type of patient-centric study has a different kind of power, and it also has speed in its favor. “This is a community movement,” Wicks says. “The patients taking lithium were self-choosing, they were getting it from their own neurologist.” Moreover, he says: “Tapping into the power of a patient community can really speed up trials, it’s a disruption of the status quo and there’s no reason this couldn’t apply to diabetes, asthma, depression, and all the other diseases we now cover.” http://commonhealth.wbur.org/2011/04/social-network-conducts-medical-research/
With more and more patients moving away from “content” sites, and choosing social media sites, medical centers are taking note. On July 5, the Mayo Clinic launched a social network site for patients and caregivers. Within the first seven days, they had 1,000 enrollees. Not limited to Mayo Clinic patients, the site is free and is open to anyone, not just those who have been patients at Mayo Clinic. It includes content from various Mayo Clinic blogs, health and medical videos from Mayo's YouTube channel and links to news articles about Mayo Clinic research and treatment advances, along with a member discussion forum. Clearly the e-patient is here and it wont be long before other medical centers will begin offering programs similar to what Mayo Clinic and Patients Like Me are offering. In fact, if you want to know how your hospital is doing as far as social networking, check out Found in Cache: Social Media resources for health care professionals.
With the Patients Like Me study now being published, and providing very valuable treatment information at a fraction of the cost and in a very timely manner compared to current clinical trials, expect to see more utilization of social networks to recruit volunteers, run studies etc.
Some take home points about being an E-patient:
• Keep a personal health notebook (be it on-line or written) and make sure you have “your data.”
• Participating in an on-line community can help you identify a variety of resources and treatments, to say nothing of emotional support. Don’t limit yourself to content sites only. Social networks are playing a very important role and will most likely play an even bigger one in the coming years.
• By sharing your data, as described in the Patients Like Me article, you can help to better determine what treatments might work for you as well for those with similar conditions.
• Use the same cautionary measures you would use on any social networking site (Facebook, Blog, Twitter etc.): Watch out for scammers; limit how much personal information that you share; be clear about what you want from the group.
• Share what you are learning with your medical provider. Many providers will welcome what you are learning, as they don't have the time to follow everything that happens on line.
Resources to check out:
• Health Central
• Shared Health Data: Design, Deliver, Better health with Your Own Information
• Patients Like Me: Includes 500+ conditions
• Society for Participatory Medicine The Society for Participatory Medicine is a 501(c)3 public charity devoted to promoting the concept of participatory medicine by and among patients, caregivers and their medical teams and to promote clinical transparency among patients and their physicians through the exchange of information, via conferences, as well through the distribution of correspondence and other written materials.
• e-Patients.Net Blog of the Society for Participatory Medicine
• Association of Cancer online Resources
• e-Patient Dave: A Voice of Patient Engagement
• Other on-line resources
0 comments:
Post a Comment