September 20, 2011

ePatients: A Hopeful Happy Handful


I was part of a conversation on e-patient rights sponsored by Klick Pharma (from who I swiped the photo), HealthCentral and the Digital Health Coalition. About two dozen patient social media writers with diverse histories with a variety of conditions shared experiences and hopes about health. I think we were trying to talk about digital health issues but just as often spoke about empowered patient concerns. I am still not sure what e-patient means but I found the conversation fascinating non the less for a number of reasons. 
While we were, at least in on the basis of the invitation, talking about an e-patients bill of rights I think Mark King made a particularly good point about our responsibilities, not that I think he meant it that way. He said he was hopeful, happy and a handful. I found that particularly good as a guiding principal for a social media writer. 
I want help make life better so I should try to be hopeful. Happiness is a choice that can be made over anger and it probably facilitates hopeful participation. I sometime fail to find happiness and I think that is probably a shortcoming I can work on. Finally I as a social media writer I need to be a handful. I need to become informed, share and motivate from my individual perspectives and at times, happily and hopefully pursue interests in cases where patient health perspectives need a voice. Thanks for that Mark.
Kelly Young made maybe the most profound comment of the day regarding the device and medication trials and approval process. She simply said that nobody asked her what she as patient wants. From that flows a similar observation about what the patient’s definition of successful treatment is. Maybe asking the patient is success should be part of the larger process. Thanks for that Kelly. 
As we got down to conversations about digital medical issues I found that my new friends, with a variety of medical problems, shared similar concerns with what I hear from my old online friends in diabetes community. Notably, patients want access to the information about their condition, the data. We would like to have access to our information in a not too overly clumsy way, preferably electronically. 
This leads to the cold fact there there is no simple, not too overly clumsy, standardized electronic means of patients accessing their own medical information. So as a health consumers I should advocate for patient input into the creation of such standards. I should do so hopefully and happily. I know that nobody is asking what patients want so I may need to be a handful to the health industrial complex in offering up my two cents. 




Photos credit to "©2011, http://klickpharma.com. All rights reserved."
Imagethink boards credit to "Graphic recording by www.imagethink.net"

2 comments:

Mark S. King said...

What a distinct pleasure to meet you and the other "e-patients" at this forum. It's striking how much of your observations here, and those of the participants on Monday, crossover from one disease category to another. It was a thrill to meet other advocates living with illness and who are engaged in doing something about it.

Your input was smart and helpful, but your greatest contribution was your support and engagement with the other participants. You instantly became our fan and our friend. Thank you, most of all, for that.

Mark
MyFabulousDisease.com

Sara said...

So are you one of the characters at the bottom of that graphic?