ePatient Bill of Rights
Update Sept. 26: the whiteboards from the brainstorming sessions.
It was a great honor and privilege for us to organize and participate in the ePatient Bill of Rights conversation that preceded this year’s ePatient Connections conference. Along with our partners from HealthCentral and the Digital Health Coalition, we were joined by 20 unbelievably engaged, educated, and empowered ePatients who helped us to really understand the world through their eyes.
Deeply engaged ePatients. -¼2011, Klick Pharma. All rights reserved.
Working closely with Lucie Leblois at HealthCentral and Bob Brooks at WEGOHealth (who is owed a big thank you from our team!), we were able to recruit some extremely savvy and opinionated activists from a wide variety of disease states. Our conversationalists for the day:
| Name & Twitter | Disease State | Blog |
|---|---|---|
| Eileen Bailey | ADHD | HealthCentral |
| Ann Bartlett | Diabetes | HealthCentral |
| Phil Baumann | Men’s Health | PhilBaumann.com |
| Robert Breining | HIV/AIDS | The Body |
| Donna Cryer | Ulcerative Colitis | DC Patient |
| Dave deBronkart | Cancer | ePatient Dave |
| Bennet Dunlap | Diabetes | Your Diabetes May Vary (YDMV) |
| Lisa Emrich | Multiple Sclerosis and Rheumatoid Arthritis | Brass and Ivory: Living with MS & RA |
| Amy Gurowitz | Multiple Sclerosis | MS-LOL |
| PJ Hamel | Breast Cancer, Osteoporosis | PJ on HealthCentral |
| Mark King | HIV/AIDS | My Fabulous Disease |
| Sarah Krug | - | Society of Participatory Medicine |
| Tiffany Peterson | Lupus | TiffanyAndLupus |
| Jenny Pettit | Sjogren’s Syndrome, Fibromyalgia | UII – Understanding Invisible Illnesses |
| Casey Quinlan | Cancer | Mighty Mouth Blog |
| Teri Robert | Migraine | Help for Headaches |
| Rudy Sims | Cerebral Palsy | rudysims.com |
| Michael Weiss | Chron’s Disease | Hospital Patient |
| Kelly Young | Rheumatoid Arthritis | RA Warrior |
We’ve made a Digital Patients list on Twitter if you’d like to easily follow the whole group.
As ePatient Dave said today at the conference, the train may not have ended up where we expected it to but the train ride was an amazing conversation. If you’re at the ePatient Conference, please drop by the Klick Pharma booth at the back of the Grand Ballroom to see the results of our chat. After an intense four hours, we were able to reach consensus on the following key messages as a foundation to a Digital Patient Bill of Rights:
- Shared access to my data
- Attitude of collaboration and overall respect
- The patient is the largest stakeholder
- Transparency and authenticity across all areas
- Voice of the patient is a legitimate (clinical) source
- The right to efficient communication with providers who utilize the technology that we need
We will be launching a Facebook page in the next week for everyone to show their support and become involved in the process. Our goal is to turn this into a vetted, published document in the next month or so, so stay tuned for more information!
The Bill of Rights Whiteboard
 Brainstorming and quotes |  What are our messages? |
 Brainstorm the How |  The draft Bill of Rights |
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