Interview with Paul Wicks, PatientsLikeMe, Keynote Speaker at Doctors 2.0 & You Conference

I look forward to PatientsLikeMe participation at the Doctors 2.0 & You conference in Paris this year, through the presence of Paul Wicks. Paul and I had the occasion to meet up a few months ago in Stanford’s Palo Alto in the heart of the Silicon Valley, thanks to Dr Larry Chu, founder of the Doctors 2.0 & You partner conference, Medicine X. And we will meet again in 2012 in both Paris and Palo Alto !  As  the role of Web 2.0 tools and Social Media become better understood in health care,  PatientsLikeMe stands out as an exciting example of what can be done.  Thank you Paul, thank you PLM, thank you to the Doctors 2.0 & You Community.

Denise Silber

Paul Wicks: I was honored to be named MIT Technology Review’s Humanitarian of the Year.  Our co-founder Jamie Heywood had nominated me for a TR35 award, but we had no idea that I was being chosen as the Humanitarian.  It was a very exciting, almost surreal experience.  When I look back at 2011, I think there were 2 very obvious wins for us as an organization.  The first was our move to open up the site to anyone with any condition.

To date, we have more than 130,000 members sharing information on more than 1,300 diseases.  That’s incredible.  The second is our work on lithium in ALS being published by Nature Biotechnology. This was really one of the first times we’ve seen networks of patients with serious health conditions brought together online to share their experiences and elevate that almost to the level of a clinical trial. It provides a good example of empowering patients and shows the potential of the web to accelerate trials everywhere. 

PW I just recently moved back to my home in the UK to spearhead our efforts here as a Managing Director.  Part of my role certainly has to do with managing our research efforts, but those aren’t separated out by region.  We have patients participating from all over the world, so our research is our research.  That said, I think there’s an opportunity to bring the lessons learned from what I learned from “Health 2.0″ in the US to the National Health Service and improve the outcomes of patients with serious and long-term conditions. Europe has its own attitudes and culture with regard to sharing health data and it will be interesting to see what that means for an organization like ours.

PW It’s funny, despite being such a data-driven organization it’s still the individual stories that affect me. The Parkinson’s disease patient who could dance at her son’s wedding because of medication-management tips she gained on the site, the patient with epilepsy who was encouraged to videotape himself going through a seizure and witnessing that for the first time in over 25 years after encouragement from the community, and the ALS patients who have become such a force to be reckoned with that now they are actually advising pharmaceutical industries on clinical trial design. You won’t see these anecdotes in a peer-reviewed journal, but these are the small victories that get us up every morning.

PW I’ve been attending a number of events in the online health space over the past few years, and I think its easy to believe that the future is all about smartphones or websites, or whatever the latest technology is. But in truth, in order to progress we need to reintegrate all of that entrepreneurial spirit back in to the healthcare system through its most sophisticated and knowledgeable change agents, the doctors. Every medical student graduating this year has never known a time before the Internet was ubiquitous, and now is a crucial time to ensure that the medical establishment sees what has been going on in the e-patient community and mobilizes its own community to join up with them to better patient outcomes everywhere.