{"id":5881,"date":"2010-05-22T06:45:18","date_gmt":"2010-05-22T11:45:18","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=5881"},"modified":"2010-08-06T21:11:46","modified_gmt":"2010-08-07T02:11:46","slug":"donna-cryers-i-am-an-e-patient-story-e-patient-advocate-to-the-fda","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/05\/donna-cryers-i-am-an-e-patient-story-e-patient-advocate-to-the-fda.html","title":{"rendered":"Donna Cryer’s “I am an e-patient” story: e-patient advocate to the FDA"},"content":{"rendered":"

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<\/a> this week, we connected with Donna through the internet.<\/em><\/p>\n

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.)<\/em><\/p>\n

\"\"<\/a>Everyone comes to their \u201ce-patientism\u201d through a unique and personal pathway.\u00a0 As a 1950\u2019s tv show once opened \u201cThere are 8 million stories in the naked city. This is just one.\u201d<\/p>\n

My e-patient story starts with another icon of classic television, Perry Mason.\u00a0 Perry Mason inspired me to want to become an intrepid problem solver, truth seeker, and advocate.\u00a0 That mission stayed with me through college at Harvard and law school at Georgetown.\u00a0 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.<\/p>\n

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.\u00a0 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 \u2013 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 \u2013 didn\u2019t quite get that one right), medication adherence, pharmaceutical innovation, on and on.<\/p>\n

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.\u00a0 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.\u00a0 It seemed a natural transition of my advocacy skills from children to patients.<\/p>\n

Roll the clock forward 15 years and I have the privilege to be a \u201cprofessional\u201d 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<\/em> meaningful initiatives and systems innovation is highly rewarding.<\/p>\n

Last October I began tweeting and then blogging under the name DCPatient<\/a> (a pun \u2013 Donna Cryer and Washington DC) and found this fabulous cadre of E-patients. For the first time I felt, \u201cThese are my people.\u00a0 This is the language I\u2019ve been searching for to describe the power and potential of\u00a0 personal patient advocacy.\u201d My passion and energy were renewed and taken to an entirely new level.<\/p>\n

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<\/strong> 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<\/strong>, 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.<\/strong><\/p>\n

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.\u00a0 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\u2019s visit, an online community, or on a national stage.<\/p>\n

Be well & Be vocal!<\/p>\n

Donna Cryer\/DCpatient<\/p>\n

\ufeff<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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