Isn’t it ironic? Tales from the capture of a patient voice

NOTE: This post originally appeared on Harvard Law’s Bill of Health blog.

In a previous life I was a headline writer, so I have to give props for the title of this Friday’s Petrie-Flom panel: “Patients and Conflict of Interest: How Can We Keep the Patient’s Voice from Being ‘Captured’?

That is, how do you avoid “capturing” the patient voice when “capturing” the patient voice is the whole point of Patient Centered Outcomes Research, the event’s topic? And yet this is a central challenge to bringing expertise unique to the receiving end of medicine and research into all levels of the process.

I want to say, “Isn’t it ironic?” but that makes me a little nervous. “Jagged Little Pill,” the musical currently having its sold-out premiere at the American Repertory Theatre a short walk from Harvard Law, is inspired by singer-songwriter Alanis Morissette’s recording of the same name.  And for all that album’s success, Morissette took a lot of abuse for misunderstanding irony in a very public way.

The ART musical devotes a powerful scene to that. In it, a young black woman is mocked by her white high school classmates for misunderstanding irony as she shares a poem taken from the lyrics to the song “Ironic.”

I wonder if that experience is a view into what keeps some potential patient “voices” from speaking up, even as leaders in American health care are eager for the capture.

When you put yourself out there, and try to speak for your authentic self in a public way, it can make you vulnerable, especially among the high-powered and privileged.

I write an occasional column on medical ethics for the WBUR blog CommonHealth, and the comments are not always kind. You need a thick skin.

With Alanis, it was the critics doing the mocking. But maybe her experience can explain why so often it’s the educated and privileged who bring their voice to Institutional Review Boards, which are required to include citizens from outside the institution. Speaking up in that setting can be intimidating.

Here’s how I got captured. I was a sports writer and arts editor in LA and Boston, left newspapers to be a stay-at-home dad, nearly lost my only child to bone marrow failure, wrote a book about her cure in a phase 3 study of stem cell transplant, developed a passion for medical ethics, and interesting doors started opening.

One of those doors was to a PCORI-funded study of oversight of learning activities in Learning Healthcare Systems, an emerging model for improving patient care while reducing costs. I’m a patient-family co-investigator on the study. The principal investigator is Dr. Steven Joffe, a pediatric transplant physician and ethicist. We’re about two-thirds of the way through conducting roughly 100 interviews of institutional and patient leaders around the country.

It’s fascinating to me to see what “patient leader” means to different people in different settings. There are five distinctly different patient leaders on our study’s stakeholder advisory board. I learn from all of them. Maybe what we share is a common sense of advocacy for better patient care.

In the process I’m figuring out what it is that makes me a “patient leader” in the first place. I have a history, with my wife, of negotiating two health systems and a sort of bicoastal comparative effectiveness research when our child was ill, and learning how crazy-making variation in standard of care can be. I’ve also spent significant time as a caregiver.

Much of my ethics background relates to the clinical setting — the hospital. I volunteer as an ethics associate at Boston Children’s Hospital. And yet I’m drawn to the blurring of the distinction in ethics between standard medical practice and research. I find that blurring, as with the Right-to-Try movement, troubling.

As a newly minted “patient leader” on an interview-based, PCORI-funded study, I’m finding that personal narratives are what inform the “patient voice” and give it integrity and power. Those narratives, and understanding their significance, may ultimately be what can keep the patient voice from being captured.

In an interview with one of my colleagues on the study, a patient leader described how a hospital so valued their input that it created a salaried position.

“They had a job description, but they literally said: Figure out what it is you should be doing,” this patient leader said. “So, we have.”

It’s hard to argue that a salaried position isn’t a “capture.” But perhaps what keeps this patient voice from being negatively captured is found in their narrative: the story of a family member’s care.

I hope so, anyway. It’s what I’m counting on to avoid my own capture.

About paulcmclean

I'm a husband, father, and writer, which is another way of saying I have the best gig there is. I'm an accidental bioethicist, occasional children's chorus chaperone, a bit over the top in the Springsteen department, and have a daughter who was cured and a beagle with a story. Some call the beagle a rescue. What they don't realize is, I'm the rescue.
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