My post to the MPD Support Listserve

Below, I have copied and pasted a post I made to a myeloproliferative disorders (MPD) support listserve.

In 2005, I was diagnosed with polycythemia vera, a member of the MPD family of disorders. Like other chronic conditions, these disorders are associated with a variety of symptoms that effect quality of life and function. After my diagnosis, I found the list online and have been a regular reader and contributer since. The MPD Support list provides subscribers with an opportunity to ask questions, share knowledge and experience, learn about the latest research and clinical trials, and share support.

I, personally, have recieved invaluable information and suppoprt from other members of the MPD support list. I have also had an opportunity to offer my perspective as a physician-educator. Quite often, members of the list raise concerns or issues about their interactions with clinicians, especially their clinicians. In response to a post about a particularly problematic interaction witha doc, I shared the following post. Visit the listserve at http://listserv.aol.com/archives/mpd-support-l.html to gain insight into the benefits of such online support groups. See also the resources at the end of the post.

Here is my post from July, 2008:

Unfortunately, all too often, we feel unheard, or even worse, dismissed by physicians who don't understand or value the importance of OUR knowledge, expertise, experience regarding our illness. Docs are not only failing to hear, connect and respond to the needs of patients. As Axxxx pointed out, docs who fail to engage and enlist the patient in care miss, or fail to collect, key information that is essential to diagnosis and treatment planning. This problem not only leads to anger, dissatisfaction and other justifiable responses (such as Exxxx's), it also leads to poor clinical outcomes. As a patient, I have had my own share of problematic interactions with docs. On the other hand, I have had some good experiences as well. As a physician and teacher of other clinicians, my whole career has been dedicated to helping students and clinicians to appreciate the importance of using effective communication. We have a long way to go.... but I have not given up on trying.

So, Exxxx (and others)... we (clinicians)... need to hear you.... respect you... appreciate you.... and acknowledge your expertise... as well as respond to your needs. And we (clinicians) also need to take advantage of listserves like this one, as well as other ways in which patients can assist each other to address the problems and needs associated with having a chronic condition. Cxxxx's advice to bring a family member, or other companion, to health care visits is a wonderful idea. It helps to have another set of ears, and an advocate with us to increase the chances that we (patients) will be get needs met and questions addressed.

I have found a couple of wonderful organizations and programs that are striving to enhance patients' capacity to manage their health conditions, as well as their engagement in the process of improving care. See the websites for the Institute for Family Centered Care (www. familycenteredcare. org (http://www.familycenteredcare.org)) and New Health Partnerships (www.newhealthpartnerships.org (http://www.newhealthpartnerships.org)). I have had the pleasure of working closely with both of these organizations and can vouch for their value to patients, clinicians and health care systems. You will find lots of good resources. [Rxxxx.. there may be some ways that we can create links to these sites from our websites].I would love to have the opportunity to serve as a source of support of members of this list who would like help forging effective partnerships with their health care providers. However, the best advice will come not from me, but from other members of this community who can share the strategies that have worked for them. Feel free however to write to me on the list as well as offline (goldsteinm@aol.com)

Michael PV since 1/2006, asa, phlebotomy