Jackie Fox: Why I Joined the Society for Participatory Medicine

This is an unusual contribution in our series Why I Joined. As we’ve observed (August 2008February 2009February 2011) that language can be important in social movements, because as words change their meaning, messages can get crossed, and what a speaker meant may not be what others hear.

In the story presented here, the language of change almost scared someone away who’s definitely aligned with our Society’s mission. But all ended well, because the meaning trumped the words. Personally, I don’t agree with all the aspects that Jackie heard – but we sure welcome the dialog! Let’s discuss in the comments.

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Why I Joined The Society for Participatory Medicine
Jackie Fox photoI was initially ambivalent about joining the Society for Participatory Medicine, for a couple of reasons. First, I will confess to being one of those who can get hung up on semantics. I don’t call myself an e-patient or an empowered patient. This perspective may have something to do with coming of age in the ‘70s. I don’t care to call myself a feminist, although I very much believe in women’s rights. I realized the same thing applies here. When I read about the Society’s mission and goals, I realized it’s something I believe in, no matter what I call myself.

The second reason I hesitated has to do with my frame of reference. I think people who identify themselves as e-patients are sometimes driven by a bad experience.  My experience has only been positive. When I was diagnosed with ductal carcinoma in situ, I had no idea I was about to get a full-time, front-row seat to the medical profession. I went from seeing my family doctor once or twice a year to having a stable of four doctors (also including my general surgeon, plastic surgeon and oncologist) and seeing one or more of them once or twice a week for several months. Not once was I treated like anything less than a full partner in my treatment plan or my care.

I have to admit the way I was treated is something I took for granted until I started hearing from other women about their experiences, from not being told about their reconstructive choices, to having their pain during a procedure discounted, to having the equivalent of a “drive by” when a medical professional broke the news they had breast cancer. My wish would for be everyone to have the same experience I did and I’d like to do what I can to foster that.

I realize I may have led a charmed life and I can’t assume it will always be that way. Health care is undergoing a sea change and the way care is delivered going forward may not be anything like what we were used to.  Patients need to be at the table for these discussions and we need to understand what’s at stake. If my surgeon, plastic surgeon, family doctor and oncologist had been in an ACO, would my access to them have suffered? Does evidence-based care equate to rationing? I haven’t got the first clue what the answers might be, or even what some of the questions are, but I think we need to work together as partners to find them. Bridging the gap between policy, which I think tends to look at groups, and the way we experience medicine as individuals, will be critical. I think the Society for Participatory Medicine will play an important role and I’m glad to be a part of it.

Society for Participatory Medicine member Jackie Fox is the author of From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer (Amazon), which was named a Best Consumer Health Book 2010 by Library Journal.  She blogs at http://secondbasedispatch.com and tweets as @jackiefox12.

We want grass roots participation. SPM membership is just $30 for individuals (scholarships on request) and starts at $250 for companies. Join here.

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Comments

2 Responses to “Jackie Fox: Why I Joined the Society for Participatory Medicine”

  1. Jackie, thanks for this self-expression! I firmly believe we can’t change culture without knowing where people are at.

    I’ve always been surprised that “patient empowerment” is often a euphemism for “I’ve been harmed by the system and I’ve got the guts to speak up about it, even though it makes me unpopular with some doctors.”

    And sometimes it does have that effect. Most members of the IHI Patient Activists group on Facebook watched a loved one get killed or maimed by a medical error, and emerged with a commitment to put an end to such harm – or at least warn others. That’s certainly one form of being empowered, and several have told me they got nowhere warning people about medical harm; they learned to express it as “being empowered.”

    (btw, that’s an open group on Facebook; anyone can request membership.)

    But being empowered is separate from experiencing harm: you can be either, or not, regardless of the other. As it says at the top of the SPM site, participatory medicine is about patients shifting to being responsible drivers of their health, and providers welcoming it.

    So, here we talk about the case for action and we try to provide tools and insights to encourage both patients and providers (and everyone else) to make the change.

    Others, what’s your experience of “the e-word”?

  2. […] week I came across some discussion on the E-patients blog that hints at another potential reason for why many in the public simply haven’t grabbed hold […]

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