breast cancer

A group of about 20 passionate e-patients, including e-Patient Dave his own self and yours truly, gathered around a biiiiig table on Monday in Philadelphia to talk about what an e-patient Bill of Rights might look like. I have to give a shout-out to my buddies at WEGO Health, particularly Jack Barrette, Bob Brooks, and Natalia Forsyth

One conclusion: don’t call it the e-patient Bill of Rights. Since we’re talking digital healthcare, let’s call it the Digital Patients Bill of Rights. That conclusion was reached hours into the discussion, which ranged over topics from chronic conditions like diabetes, HIV/AIDS, multiple sclerosis, rheumatoid arthritis, lupus, multiple sclerosis, and fibromyalgia to acute illness like cancer.

We had about four hours to hammer out a first-principles statement, and Mark Bard of the Digital Health Coalition deserves the Cat-Herding Nobel Prize for keeping a group of vocal, passionate, diverse e-patients on task.

To lift directly from the Klick Pharma blog (Klick was one of the sponsors of the event, along with Pixels & Pills, Health Central, Care Coach, Kru Research, Radian 6, Red Nucleus, Think Brownstone, Verilogue, and a who’s who of health media sponsors):

“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”

It’s a start. A damn good one. The Klick Pharma blog post also has a full list of all the e-patients who participated in the conversation. It was quite a day.

• Those dealing with chronic conditions have an even deeper need to be activist e-patients. They also have a greater level of knowledge, and can be true leaders in this on-going discussion.
• Each healthcare consumer – formerly known as “patient” – must take action and responsibility on his/her own behalf. And not shut up until they get what they need to achieve the best health possible.
• Having town-hall meetings across the country, inviting community members – healthy, chronic, whatever – to attend, to share, and to learn how to both be consumers of healthcare and advocates for the family members who depend on them, would be a great way to keep the ball rolling and drive wide awareness/support for empowered, engaged e-health.
• Those of us who’ve taken a trip through the medical care car wash have a duty to share our stories, to lead, to educate, to shake up the status quo, to effect change. We get the elected representatives, and the healthcare, we deserve.

Have any thoughts on what you’d like on your Digital Patient Bill of Rights? Tell me.

It’s your health, your healthcare, your life, your choice. Exercise it.