I recently found what I thought was an excellent definition of a e-patient: “A patient who is empowered by the internet and digital technology to find education, support and treatment. Technology is enabling ePatients to take an active role in their own healthcare like never before. Digital is also allowing ePatients to communicate with providers, caregivers and other stakeholders in a powerful way that brings about “participatory medicine”-where the patient is actively leading their own recovery and care.”
Great stuff – huh?
Problem – it is from a corporation that sponsors a yearly conference: ExLPharmaConnections. Their website states that “the goal of e-Patient Connections 2013 is to bring together health communicators from different industries to compare and contrast the best ways to connect with empowered, digital patients.” By different industries, they mean large health insurance companies, pharmaceutical companies and a representative from hospital or two…but from the list of participants – mostly insurance companies and drug companies….aalthough they did mention one “ePatient”.
I have tried, and tried and tried and tried to get in contact with someone from this convention/organization – but I have yet to receive a response. Note on their contact form that “company” and “title” are mandatory fields. In spite of the warm and inviting intro on their splash page, it is obvious that they are not targeting the actual ePatient for this conference – not even an educated ePatient like myself. They seem to be targeting people who want to get together to talk ABOUT ePatients, not WITH them.
Scott Mace recently wrote a most excellent article explaining the role of an ePatient here on healthleadersmedia.com. He eloquently quotes ePatient Dave’s most recent book, Let Patients Help, and give the reader a few real-world scenarios of what it means to be an ePatient and how it can help you or a loved one receive better health care. That’s awesome. Please click over and give it a read.
When I heard ePatient Dave’s Ted Talk, I was so inspired. It was as if this was the one this I had been waiting to hear my entire life. All of the horrible medical stuff I had muddled through now had a purpose. So my tem little fingers got busy on the interwebs contacting everyone I could find – I wanted to be involved! I did hear back from a couple of the organizations I contacted, but with a LOT less enthusiasm than I had expected. Here I am – offering them my skills, experience and time for FREE… and….well… All I keep reading on ALL the sites are how they want “people to get involved.” Well, here I am y’all!! I’m a people! I want to be involved!
There seems to be a very distinct disconnect (for lack of a better word at the moment) between the different groups and agencies and companies that are talking up the popularity of the ePatient and how important this ePatient is to the future of medicine. Some publish downright negative articles about ePatients (a popular political gossipy website – you can Google this site – this one doesn’t even deserve a quote!). And then, there are several doctor-only blogs that refer to ePatients in very negative ways, such as having “Cybercohondria.” There is even a Wikipedia entry for it – and actual university studies have been done on the “disorder.”)
Maybe this is why I received the tepid response to my inquiries…i’m not the “right type” of ePatient. I wish I know how to become the “right type.” What do I have to do? What malady to I have to be afflicted with? Who do I have to connect with?
I want to be involved in getting the message out – such as educating physicians about ePatients (I used to teach physicians ACLS – Advanced Cardiac Life Support – when I was an EMT back in the 1990’s, why couldn’t I teach them about this?)
I have a glimmer of hope in the Society for Participatory Medicine. I desperately want to join, but alas, my numerous medical conditions that have kept me from working since 2009 so I can’t justify the fee to join as all my funds go to co-pays (I am referring to my medical weirdness which have had me advocating for proper medical care since I was 12 – and sneaking into medical libraries for info on my dubious diagnoses since I was 16 – wayyyy back in 1979 – hmmm, does that make me the original ePatient???). I am trying to volunteer in any way I can to help out to obtain membership and I hope that works out soon. The Society also publishes a Journal and I look forward to possibly being able to contribute in the future, given my decades-long history of advocacy, research, collaboration with my doctors. It is a seemingly never-ending process as I get diagnosed with something new that baffles each new doctor I see on a monthly basis these past several months. I’d certainly would like to use all of the experience I gained researching and writing all those term papers for college degrees for something worthwhile.