On July 30, an article in the Wall Street Journal titled “Clincal Trials may be Compromised by Online Patient Chatter” prompted a lot of discussion among patients and researchers on Twitter. At the heart of the article is a concern shared by many sponsors and researchers: By discussing their participation in trials through blogs, social media, and online forums, patients may be unblinding themselves and compromising the scientific integrity of the studies.
While this is a legitimate concern,and something that should be addressed with input from patients and patient communities, it’s important to remember that open communication online can be just as much—if not more— of a value to clinical research than a threat.
That’s one of the reasons why I’m excited about the opportunity to present at Medicine X. I’ll be talking about about some of things my Lilly COI colleagues and I have learned through our journey into social media, connecting with people and engaging them in clinical research.
What is Medicine X?
According the conference website, Medicine X (taking place this year September 5 -7) is “a catalyst for new ideas about the future of medicine and health care.” Its focus is on emerging technologies and their potential to empower patients, advance medicine, and improve overall health. Perhaps more importantly, the structure and content of the conference serves to foster more collaboration and integrated thinking among people with different experiences, skills sets, and area of expertise in the hope of bringing forward bigger and better ideas for improving lives.
Last year, I attended the conference for the first time and was amazed by the spirit of the conference, particularly by the way that Medicine X holds its patient scholars in an appropriately high regard. This year, I’m looking forward to learning more about mental health, the medical team of the future, and the no-smartphone patients, and in gaining an even deeper understanding of patients’ needs and opportunities to drive our work forward to meet them.
A Social Journey to Patients at the Center of Clinical Research
I was honored and humbled earlier this year when I learned that my abstract was accepted by the conference organizers:
Developing new drug treatments cost too much and take too long, with results that all too often don’t meet patient needs. The cost, time, focus, communication and inefficiencies in clinical trials are a big part of the problem. In 2012, Eli Lilly Clinical Open Innovation (@Lilly_COI, www.lilly.coi) began a journey to change clinical research by making open information about clinical trials more valuable to patients and all involved in clinical research – open, in public, and beyond the towered walls of pharma.
Health Information Technology (HIT) is the toolset. Through a set of projects and methods including Open API, Consortium to help patients match to clinical trials, patient input into clinical trial design, user centered design, open tools and prototypes we continue to work to leverage HIT to better enable open, people-focused engagement in clinical research.
That’s all well and good. But it’s not what I’d like to share at Medicine X. If HIT is the toolset, people are the power that makes the tools hum.
I’d like to share how Social Media and people engagement creates the journey, and how being purposely social gives direction, shape and provides accountability and meaning for the work Lilly COI does. I’d like to share:
Fears, perceptions and biases that exist – not just of patients about pharma, but of pharma about patients – and how those perceptions can be changed through open, honest social conversations
How awesome it is to be the only pharma at patient meetings, and how it seems that’s where all the good stuff happens
How SM relationships have changed (and continue to change) the culture of Eli Lilly and Company, focused on clinical trials
The legal and regulatory frameworks that exist in pharma around patient engagement, and how those can be rethought, worked through and torn down
How much I’ve learned from patients about Social Media, and how humbling it is to be aware of how much I don’t know
How things seem to go best when moving to the uncomfortable zone
How I’ve come to meet some new friends, and how we roll
When I screw up, when I feel I don’t do enough, and what happens then
How Social Media led to the first open, non-lawyered up Patients at The Center of Clinical Research Workshop with patients live tweeting from within the walls of pharma. And what one patient noted while going to the bathroom. (Symplur report #PACCR)
Some next step thoughts about how Social Media can further change the relationship between clinical trials and those who can benefit from them
I can hardly wait to get to Stanford and join my friends and colleagues in exchanging ideas about the future of medicine and research! I’d love to hear your thoughts on how social media and online communication has and could continue to make a difference for patients and clinical research. Comment below or send me a tweet.