September 19, 2011, Philadelphia, PA, Digital Health Coalition

Photo credited to: (C)2011, http://klickpharma.com. All rights reserved.

“Imagethink” Boards credited to Graphic recording by http://www.imagethink.net All rights reserved.

              A few weeks ago I was asked by WEGO Health, a Health Activist Portal Website company I am proud to be affiliated with, to take part in an Initiative devised by the Digital Health Coalition to help brainstorm a Digital Patient “Bill of Rights” along with Nineteen (19) other Patient Activists.  Despite my “challenging” present health condition, I accepted immediately, not for one second realizing that the 45 pounds I gained due to MONTHS of being on 60 MGs of Prednisone would require me to modify my “business attire” to a professional collared shirt, a fitted dark sports jacket and – – – – SWEAT PANTS!!!  That’s right; I was panicking while packing as all I could seem to find was my “Johnny Quest” sweat pants (which came with the underwear as a package deal) and my extremely bright New England Patriot sweatpants.  However, I did have a pair of NBA Warm-Up Black nylon “pull-away” pants but they had a White Stripe on them.  Desperate times called for desperate measures so my Mom used a thick black Magic Marker to stylize my NBA threads and once I put the shirt and jacket on I looked like a combination of Fred “Rerun” Berry” with a touch of an obnoxious 7-year old trying to act cool by “playing business.”  This is how I met my brethren of fellow Patient Activists.

               The above “Mural” or “Image Think Board” made quite an impression of me as it was drawn simultaneously with our meeting and attempted to capture the highlights of the fast and furious intelligent ideas that were being thrown about the room.  Luckily my sweat pants made me more comfortable than others so I not only learned a great deal but I enjoyed myself.

               Different participants have different opinions on the merits of our meeting so I won’t try to sum up their thoughts since that’s not fair.  From my perspective, I thought it was fascinating that an organization and group of intelligent business people thought it worthwhile to congregate Patients to get their input on “how things should be.”  Granted, this was a Closed Session so it was more like Patients articulating Dream Lists of “Needs” and “Wants” and enumerating the various gross inefficiencies and inadequacies of the current patient-doctor interaction.  However, the Image Think Board captured the general themes which can now be synthesized for information clarity and for “diplomacy” purposes.   I hope to remain a part of that process.

               Subsequent to the meeting, WEGO Health held some internal Video Conferences with a few of us who were privileged to attend the September 19th Digital Health Conference in Philadelphia, PA.  Thankfully, Skype and Video Conferences don’t capture one’s entire body so I was able to go “Johnny Quest” sweatpants without fear of being “outed” as a lazy Twelve (12) year old!  (Truth be told, I am going through Chemotherapy at the moment after a failed attempt at 3 months of 60 MGs of daily Prednisone to combat a potentially fatal lung condition I have which is best known by its acronym “BOOP.”  As a result, I look like the entertainer, Jerry Lewis, when he had a similar lung problem a few years ago and his unfortunate weight gain from the Prednisone made his face look like that of a blow-fish.  But I also feel like Fred Flintstone because, well, just because.  Let’s just say I have TREMENDOUS RESPECT for people who fight through Chemotherapy.)

            In any event, WEGO  wanted to know what I thought about the Conference, what I learned from the Conference and what surprised me about the Conference.  I’ve explained my main thoughts above and to elaborate I must emphasize that as “cutting-edge” as we “digital patients” have become, we don’t yet see that the mere congregation of “Us,” whether virtual via various Health Care Social Media platforms or in person such as at this Conference, we can be a POWERFUL FORCE.  Because of the specificity potential of technology, there is no such thing anymore as “Grass Roots” causes. Thus, somehow we find each other on-line and assess our common concerns and go from there.  Utilizing that criteria and assessing the issues discussed by these twenty (20) articulate digital patients, digital patients deserve a “Seat at the Table” when it comes to Healthcare concerns.  Moreover, Digital Patients can be organized to FIGHT against unfair practices of healthcare manufacturers who, for example, insist upon owning a patient’s “data” which emanates from their equipment.   This problem of possession, ownership and access to one’s Health Data was the issue I learned most about at this Conference so SIGN ME UP TO HELP FIGHT AGAINST IT.

               What surprised me most about the Conference besides us all beginning to understand that “The Patient Voice” is emerging as the “Communicator of Change,” was that some patients don’t yet see themselves as Consumers while others make Ralph Nader and Michael Moore seem like Cheech and Chong!   However, over time I am sure they (and we) will find a balance.

Read it here FIRST: September 19, 2011 marked the beginning of Medical Patients as Communicators of Change in Healthcare (and that Suits and Sweatpants might soon be the new “business casual” attire).