The ePatient Bill of Rights
If you could change just one thing about life with a chronic condition, what might that be? Perhaps, it would be better relationships with doctors, better access to your medical information, better access to the conversation going on in the healthcare industry? The third biggest pursuit online is health information! Patients are online, in chartrooms, tweeting, facebooking and sharing our experiences with one another and empowering other patients along the way.
When it comes to searching for change, activism is what becomes the game changer! Last December I sat in a movie theater, riveted to my seat watching the King's Speech. It was no surprise that it got a standing ovation from all of us in the theater. It deserved every accolade and taught us that the empowered patient is not a new term.
In the digital age, the name "empowered patient" has changed to ePatient. What does ePatient stand for? Equipped, enabled, empowered and engaged patient. What it is not, is "Electronic Patient". And let me add a few of my own words: evolved, electrified, enthusiastic and eclectic!
This week, I was invited to attend the ePatient Conference in Philadelphia. HealthCentral.com asked several ePatients to attend a roundtable discussion on creating an ePatient Bill of Rights. I was curious to what this might be.
A couple of days before the workshop began, Mark King sent an email saying how much he was looking forward to this and brought out attention to his blog on the Denver Principles. The Denver Principles became a declaration, designed by a group of HIV/AIDS activists who wanted healthcare reform and, in particular, health care as it pertained to patients with AIDS. This could not have been timelier!
When we assembled, there were 20 of us from many conditions and the ah-ha for most of us was finding the common issues. Mark Bard from the Digital Health Coalition moderated us to help keep the focus on what we feel so passionate about: our health! Everyone had an amazing level of energy and deep understanding of the problem that caused them to become vocal, self advocates in the doctor's office, well read on their condition and motivated in their care.
The Digital Health Coalition's objectives are to find ways, through the digital medium, to identify needs and recommend actions that would benefit the entire healthcare system. But what we know about any healthcare system is patients are the largest stakeholders! So before change can really begin, what do they need to know about patient side of healthcare?
For me, meeting 20 people who were animated and passionate about their care was so inspiring! I hope this continues to grow and that the ripples this creates brings the same sense of closeness, connectedness and cooperation!
This just the start and there is more to come! If you would like to share your thoughts, you may leave comments here, or read other's experience during the workshop check out the E-Patient Bill of Rights facebook page!