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

e-patients imageOne 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 quitea day.

Some of my thoughts about the conversation, and the event:
  • 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.

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Digital Patient Bill of Rights: check!
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9 thoughts on “Digital Patient Bill of Rights: check!

  • Pingback:e-Patient Bill of Rights – you in? :: Mighty Casey Media: Business Storytelling & Content Creation l MightyCasey.com

  • September 22, 2011 at 1:50 pm
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    So often we are reinventing the wheel instead of taking this to the next level and surprised that people still are confusing the message with the medium (digital).. This isn’t about digital rights but co-creating our health.

    Lets build on the already established centered care movements.

    For example – PBS had a series on What are the Core Concepts of Patient- and Family-Centered Care? http://www.pbs.org/remakingamericanmedicine/care.html

    Dignity and Respect. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care.

    Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively
    participate in care and decision-making.

    Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.

    Collaboration. Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care

  • September 23, 2011 at 8:19 am
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    I don’t disagree w/anything you say, Sherry. We (the group around the biiig table) all had the same input re data-sharing, mutual respect, collaborative participation. A pharma conference focused on e-patient engagement seemed like the perfect opportunity to pour patient-level ehealth ideas into the ears and minds of providers. That’s a win in my book.

  • September 25, 2011 at 7:45 pm
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    You are mighty indeed, Casey.  Thanks for your valuable participation at this workshop, and your loud and empowered voice — I became a fan, instantly.

    Mark S. King
    MyFabulousDisease.com

  • September 26, 2011 at 10:35 am
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    Honey, us loud redheads need to stick together! I became an instant fan of MFD/you, too. You had me at “sex club video” 😀

  • October 17, 2011 at 4:36 pm
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    I am your newest fan…….:)

  • October 17, 2011 at 4:36 pm
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    I am your newest fan…….:)

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