So, here is a post I made today to the MPD-Net listserve regarding how patients might engage health care providers to be more patient-centered, responsive and active. I will also add the document I referred to in the post to the blog site.
Here is the post I responded to:
Hello, I know there are some of us that deal with Dr.'s that don't seem to show much care. But after 3 yrs of me having to be the medical professional, it's getting old! Is there any suggestions, short of changing Doc's, that would help with getting the Onc/Hem to show some care and interest? Maybe I'm wrong, but when tests are done, shouldn't it be normal for the Dr to call and explain the results? I have to leave messages for the Dr's nurse, and hope someone will call me and explain things? I'm the one who gets the result copies and then have to research the medical info on the web, as no one ever calls me to explain them? The only time I've had any compassion and care shown is when I went to see Dr.Cxxxxxxx in xxxxx! I apologise for the rant, but these doctors really need to do some changing. Pxxxxxxx, Oregon
Here is my response:
I am saddened, but not surprised to learn of your frustration. As a physician educator, I have spent my career trying to change the culture of medical care to be more patient-centered. Though I would say that many docs and clinical team members truly want to meet patient needs, many barriers remain, including time...but that is no excuse for not meeting patient needs for information, results...and most importantly, compassion!
As I have mentioned in previous posts here, 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) and New Health Partnerships (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 there.
Pxxxxx, separately, I am sending you a document that I created for a project I was working on that provides some guidance for helping patients get more out of their visit with their doc. It also has links to other resources. I know that we can't include attachements in e-mail to the list, so If anyone else wants a copy, e-mail me at firstname.lastname@example.org.
I hope these are helpful.
Pxxxxxx, if you would like specific guidance and/or coaching please also feel free to contact me directly.