Meet Donna Cryer – another person who was an e-patient before she ever heard the word. (Weren’t we all?) As with Diane Engelman’s “mama lion” story this week, we connected with Donna through the internet.
I heard her speak last month at the National Library of Medicine’s e-Patient Conference. (Yes, they had an e-patient conference!) She’s a terrific speaker – and wait till you see what she’s created as her e-patient activism. (I took the liberty of boldfacing a couple of items.)
My e-patient story starts with another icon of classic television, Perry Mason. Perry Mason inspired me to want to become an intrepid problem solver, truth seeker, and advocate. That mission stayed with me through college at Harvard and law school at Georgetown. I was a child welfare attorney and interned at the U.S. Department of Justice in the Criminal Division, Child Exploitation & Obscenity Section, specializing in applying law to the online environment, helping to capture online pedophiles.
However, I had a liver transplant due to autoimmune conditions between first and second years of law school, an experience that forever changed my perspective and path. With several months in the hospital being evaluated for transplant, having my colon removed (ulcerative colitis), and then the transplant, I had a frontline view of the healthcare system – issues with insurance companies, inadequacy of patient materials, doctor-patient dynamics (good and bad), the role of nurses, medication error reduction, infection control (106 degree fever and reopening a wound – didn’t quite get that one right), medication adherence, pharmaceutical innovation, on and on.
Blessed to receive a liver — thousands do not — I felt called to ensure that other patients benefited from the great parts of our medical system and avoided the frustrating and downright dangerous parts. If I could make navigating this process or going through a similar experience better for families and individuals, then I would be doing something worthwhile with this second chance at life. It seemed a natural transition of my advocacy skills from children to patients.
Roll the clock forward 15 years and I have the privilege to be a “professional” patient advocate and have constructed an entire company, CryerHealth: Patient-Centric Solutions, around the idea that patient perspectives are what should drive healthcare. Serving as a catalyst and facilitator for companies to work with patient advocacy organizations and medical societies to co-create meaningful initiatives and systems innovation is highly rewarding.
Last October I began tweeting and then blogging under the name DCPatient (a pun – Donna Cryer and Washington DC) and found this fabulous cadre of E-patients. For the first time I felt, “These are my people. This is the language I’ve been searching for to describe the power and potential of personal patient advocacy.” My passion and energy were renewed and taken to an entirely new level.
My call to action now — Enlisting a cadre of fellow e-patients to not only improve navigation of the existing system but shape the system as policymakers on committees, government and hospital boards, and even running for office. I recently began my own 5 year term as a patient representative / consultant to the U.S. Food and Drug Administration, serving on advisory committees as a voting member and otherwise providing direct patient input into the drug approval process. Let me tell you, testifying at a hearing is great, but voting feels much more satisfying.
I am convinced that unless patients take their seats at the table when healthcare policy decisions are being made, we only have ourselves to blame if the system does not start to better reflect our needs and concerns. We owe it to ourselves and all the patients and families coming behind us to step up and use whatever training and talents we have to advocate whether in our own doctor’s visit, an online community, or on a national stage.
Be well & Be vocal!