“LET PATIENTS HELP”
The inspiration source for this «Let the Patients Help» post is double. It came when I read during the week-end Dave’s post on his appearance at the CME dinner. Then, I used his slogan as exactly appropriate in an online Facebook discussion about the restructuring of the Greek healthcare system. In the hearings that preceded the voting of the new healthcare system legislation , policy makers listened and discuss only with organised professional interest groups. The interest groups «fight» with the Ministry for months now over keeping their privileges and both the policy makers and the interest groups forget that they exist because of patients, who cannot find doctors because they are on strike, they cannot have operations because the waiting list is unbearable….
After talking to friends today who also liked my «Let Patients Help» Facebook post, I thought about writing this post to talk about the origin of the slogan and of my good friend Dave. Dave deBronkart (@epatientDave), is an American kidney cancer survivor and a well known health activist in participatory medicine (www.e-patients.net). Dave has already used the slogan «Let Patients Help. We are the ultimate motivated stakeholders», in his Testimony before the Meaningful Use Workgroup, HIT Policy Committee on April 25, 2010. This testimony is a must read by both patients and Health Information Technology policy makers regarding why patients’ data are important and why innovation should be enabled through open interfaces ONLY.
Dave is a frequent speaker in conferences and congresses and in his most recent presentation last Friday, he was honored to be invited to speak briefly together with his oncologist, Dr. McDermott, to a group of oncologists.
What’s the important thing about this presentation? But that for the FIRST time, a PATIENT was invited to speak at a CME!
Continuing Medical Education-CME is mandatory in certain countries that evaluate the accuracy of knowledge and skills of health professionals (doctors get credits towards accreditation). Dave’s appeal “Let Patients Help” was received, according to grapevine info at the CME “spectacularly well”.
Till now, the few CME that I have attended in international oncology congresses were strictly physician centered and in those in which patients were admitted to attend, there was no idea about a patient presenting his/her perspective on the topic discussed. Now, that Dave made a start, we may expect more e-patients appearing in other medical conferences to present the patient view.
E-patients are still mostly a US phenomenon, since in Europe there are very few as far as I can know. In Europe, e-patients are not considered a special breed of people, they are just ordinary people, who after experiencing a critical health condition decided to take their health seriously, to learn about it and to actively seek to cooperate with their medical teams. Some of them blog or are active in some way in their community, some are members in patient support groups and very very few have the personality, the knowledge, the empathy, the skills and persistence to become voices of their local patient movement.
I do not believe that this situation will continue to be as it was till now. A new wave of information reaches patients in Europe about what patients in other parts of the world have succeeded by standing up and expressing to their physicians their preferences and the questions they have about their health. The forthcoming conference “E-patients Connections”, that will come to Europe for the first time next June, will be a great opportunity to meet and listen to some of the European e-patients, that try to bring change in how medical services are offered in Europe and in how health professionals communicate with patients. If it acquires the same momentum as it did in the USA, it is expected to become a big stone in the paternalistic European medicine sea… The shortage of e-patients has also to do with the fact that in many European countries medicine remains strictly paternalistic and patients not only find difficulties in communicating their preferences to their doctors but also the fact that patients might have preferences sounds absurd to health professionals.
I have no doubt that Dave’s eloquency has captured his audience, because after spending a week together at the Salzburg Global Seminar , where more than once he had the opportunity to make very astute remarks and one or two short interventions, he has convinced me that he knows very well his topic and is able to present succintly and concisely his views.
Now, you can read the story as Dave presented it in his Facebook page:
Kidney cancer CME class «Includes the Patient Perspective» – by E-Patient Dave deBronkart on Sunday, February 20, 2011 at 5:31pm
Medical professionals in most states are required to periodically update their training with CME (Continuing Medical Education). Last Friday I was honored to be invited to speak briefly to a group I care about a lot: oncologists (cancer doctors) at a CME session on kidney cancer in Orlando.
There was only time in this dinner meeting to talk 12 minutes (longer than the 10 they’d budgeted), but I’ve heard through the grapevine that it was well received. That was good to hear, because during the talk there was little audience reaction: apparently physicians are taught not to emote much.
It was a special honor to be on the same program with my own oncologist, Dr. McDermott. And the event leader, Dr. Figlin, is often mentioned by the members of my ACOR kidney cancer group. It’s a true privilege to work with these medical leaders.
Note: this takes funding. I couldn’t do it for free, and other patients won’t be able to do it for free. As I’ve often said, patients seem to be the only people in healthcare who have to PAY to be heard – everyone else can attend these events as part of their day job. As I’ve written, that’s especially ironic because the patients with the most «experience» (i.e. illness history) have the most to say but may be least able to donate their time.
Thanks to visionary CME provider Lawrence Sherman of Prova Education for arranging this, including funding. (For me it was much more work than 10 minutes suggests, because CME content is far more regulated than anything I’ve ever seen. I appreciate the gentle and patient guidance Prova’s team gave me.)
The best thing about the good response is the hope that more and more CME will include patient participation. Also, in 2011 I’m looking for partners to help me create, license and distribute CME content about patient engagement and participatory medicine. Interested experts, please contact me.
Thanks also to Pfizer, the company who sponsored the entire event.