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Currently showing: Funding longer lives > Health/medicine

25 Feb 14 09:00

So just how private should your health data be? Most of us wouldn't want our brushes with illness shared... but isn't that where the future lies - finding solutions by sharing, by pooling, allowing science to learn from the wealth of it all?

I first heard of James Heywood, Co-Founder and Chairman of PatientsLikeMe, when he joined a Longevity conference at Swiss Re in October 2012. His is a very unusual and undeniably inspiring story. His brother Stephen was diagnosed with ALS (Lou Gherig's disease) in 1999. They started searching for ideas that would extend and improve Stephen's life... and by 2004 James, his other brother Benjamin and longtime friend Jeff Cole founded PatientsLikeMe.

PatiensLikeMe was literally founded on the Heywood family's experience with Stephen, on the idea of making sense, finding solutions and finding comfort in the company of others with the same problems. What they created was health data-sharing platform that today has over 220'000 members, categorizes more than 2'000 conditions, has delivered over 30 research studies and over 1 million treatment & symptom reports. In the video clip James explains that the way forward for health care is by sharing experiences and data to find comfort in communities and accelerate research for better treatments.

I've listened to James' interview, I've also be sucked into his thoughts in other places and can only recommend you do the same. For example, for sixteen minutes well spent, take a look at his TED Talk.

When it comes to sharing health data, the subject is a tricky one - but PatientsLikeMe leaves no doubt that, for them, Openness is essential. They don't only have Openness as a core value - they also have an Openness Philosophy on their website. In it, they explain exactly what they believe: "...sharing your health care experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken health care system."

One of the things that struck me most about PatientsLikeMe was when, on James' profile, I came across a link to Stephen's data ... Stephen, the brother who had passed away in 2006 after a long bout with ALS. His profile name was "ALSKing101". Take a look. Detailed data, health data, a life of a fellow human being... just imagine if that sort of detail were shared across the globe. Just for a moment, don't think of thorny privacy issues or potential for mischief, think about the potential. Just imagine how scientific discoveries would leap frog.

Over 200'000 members of PatientsLikeMe share their data - and find comfort in finding others with equal conditions - all of this helps both mind and heart. This type of engagement helps the patient, helps the scientific community - and it of course also helps the insurance industry. Here's what James had to say when he attended the aforementioned 2012 Longevity conference: "Is the risk mitigation industry of the future about identifying risks so that we can financially avoid them as enterprises? Or about building tools to mitigate risks so that we actually improve the way humans live? And I think it's not clear that the industry has decided which way it wants to go. Right now it's about identification and understanding - but I think there is a huge potential to think about collaborative mitigation. So that we take what is currently about just managing - and turn it into actually minimizing and collaboration. I don't buy life insurance to manage the risk of dying - I buy life insurance so that I have a collaborator to extend my health span, my longevity, my quality of life."

View the interview in full here.

In one of the clips I've come across, James sits in a small office, he's soft-spoken, humble. He looks straight into the camera as he says "We have a big goal - the goal is everyone learns from the experience of everyone else on every meaningful variable that can affect the outcome, in real-time, across the whole medical system. It's a big goal." When I look at him, I believe that he won't shy away from that big goal. Everything he does is, as it has been from the start, founded on the inspiration and the belief instilled by the life, the fight and the passing of his brother Stephen.

Live better, together! | PatientsLikeMe

PatientsLikeMe: Share your experiences with treatments. Find patients just like you. Learn from others who know. Join now!

Category: Funding longer lives: Health/medicine, Long-term care

Location: Cambridge, MA, United States


ideapete - 25 Sep 2014, 6:24 p.m.

I have always wondered about the argument ( mostly by administrators ) that patients value their data protection above sharing to obtain improvements in their life. Sorta " I an dying but don't show my data " Privacy was a major portion of the HIPPA act in the US ( ton of money for MIS/IT ) and now most healthcare facilities require you to sign a waver ( so that everyone and their contractors can see your data ) before they will treat you. Indeed we need to do a much better job of sharing information in a clear and simple way to help the patient ( maybe listen to them to ) in ways that bypass the chronically inefficient healthcare system . Or maybe thats why they call them "patients" because they have to be : ) ; )

Yuezhang Qu (Yvonne) - 25 Dec 2014, 2:36 a.m.

The sharing data will add factual voice share of patients, and improve the quality of human life.

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