This page contains comments about this book’s story, from people who were involved in this advocacy before the story started, during its unfolding, and have continued the work.
In April of 2009 I flew to Boston for a Health 2.0 conference. From the mainstage, co-host Matthew Holt unexpectedly called on a member of the audience. On a side balcony on the second floor, a tall man stood up. All heads turned to see a patient named Dave. With a clear and loud voice, gesticulating for effect, he recounted his experience with Google Health.
At the time, I was an independent consultant in Washington DC, a hired gun for organizations crazy enough to believe at the time, as I did, that digital health information might actually be beneficial for patients. “Wow,” I thought. “That’s a voice Washington DC needs to hear.”
I knew plenty of patient advocates back in DC. Most focused on privacy and security, even at the cost of locking up health information. But Dave wanted access to his data. He wanted to use it to improve his own health, and to collaborate with his doctors. Yes, that!
A few months later, Dave attended a meeting at the Center for Democracy and Technology that I’d helped Deven McGraw to organize. It was the start of a long and fruitful friendship. In 2012 when I faced some strong resistance in my role building the Office of Consumer eHealth at ONC, Dave was an invaluable collaborator and sounding board for me. And through our friendship he became a literal poster boy for the empowered patient of the future. Dave continues to be a first-rate patient, changemaker, visionary, and friend.
— Lygeia Ricciardi, consumer evangelist, policymaker, and entrepreneur at Ada Rose
The first time I met Dave was when he came to Washington, D.C., at the invitation of the Health Privacy Project at the Center for Democracy & Technology, and he told his story about accessing his health information and how that helped him find the treatment that saved his life. I had always been a proponent of the right of patients to get their health data – but I didn’t fully appreciate the potential power of that data, in the hands of a patient, until I heard Dave’s story. Soon after that, he named his movement – “Gimme My Damn Data” – and getting patients access to their data became a major federal policy priority.
We still have a long way to go before patient access to data is the norm – but I can’t imagine how far behind we would be without Dave’s early advocacy work.
— Deven McGraw, Ciitizen Corp. Health privacy expert, health data evangelist; at the time, head of the Health Privacy Project at the Center for Democracy & Technology
I first met e-Patient Dave at the Medicine 2.0 conference in 2009 in Toronto. I was familiar with vocal patient advocates from my days as an oncology social worker in the 1980s and 90s but they were mostly advocating for better treatments. What Dave was doing was new to me – advocating for access to his health data now available through early patient portals tethered to EMRs.
It made perfect sense to me – provide patients their data so they could participate more fully in their medical decisions.
Also, in that speech, Dave was advocating for correcting errors in the EMR data which had been featured in an article about him in the Boston Globe. Since then, Dave has helped to activate a whole generation of patients advocating for access to data and full participation in medical decisions, a major shift from the traditional, paternalistic approach to medical decision making.
— John Sharp, Connected Health Alliance; at the time, Cleveland Clinic
In my innovation journey over the past 20 years there were some pivotal moments, some of them led to a epiphany. Dave’s talk in Canada “Gimme my damn data” clearly showed me the path forward in changing healthcare into a sustainable, accessible and even more effective system.
The video of his TED talk is being used in medical and nursing schools to teach and in general could be seen as core of what needs to be done, still in 2021: letting patients help improve care, which they cannot do without access to their own health information.
— Lucien Engelen, Deloitte Center for the Edge; creator of #PatientsIncluded and the TEDx where I spoke
I’d love to collect names of the many others who’ve been in this movement, from long ago to right now. I hesitate to start, because where do you draw the line, if any? But let’s gather names and worry later about what to do with the list.
*Rob Kolodner* was ONC back before any of the government incentives and mandates that led to “meaningful use” regulations. He advocated for patient health data rights and created a governance committee.
*Sherry Reynolds* has been a long-long-time evangelist for patient control of their health IT. She stood up the patient data infrastructure at Group Health Collaborative, a pioneering Seattle area health system owned and driven by its patients. (She was on Kolodner’s governance team, as was Deven McGraw.)
*Regina Holliday* became one of the most potent, best-known evangelists in the world through her creation of The Walking Gallery of Healthcare – a community of hundreds of people who’ve had their medical stories painted on jackets, which they wear to medical conferences. (We need a virtual equivalent.) Her advocacy started after her husband Fred’s tragic death from kidney cancer, a process made much worse by difficulties with getting his medical records.
Please add more. It’s important that these pioneers be recognized.
Who else?
Physician and IT leaders at Group Health Cooperative who started their second EHR implementation with the patient portal (2003) like James Hereford and Ted Eytan, MD.
Deven McGraw who served on the AHIC Successor Governance Committee as one of the patient voices back in 2008 (with me)
Numerous staffers at ONC like MaryJo Deering who along with Rob Kolodner who was the acting director who brought patient advocates in and co-created the patient engagement strategy with us. Ex) we co-created the position that (was watered down after Rob left) that Lygeia eventually filled a few years later.
The public policy team at HIMSS that drafted the legislation that eventually became HITEC and coached some of us how to do advocacy. (walking the halls of congress every year for 3 years) like Dave Roberts and Tom Leary (I started out as a HIMSS Chapter advocate)