Who gets to say what’s patient-centered? (Hint: the one who’s IN the center)

This is an adaptation of a message I wrote last night to some friends who are participating this weekend in PCORI’s workshop this weekend.  I wish I could be there, but overseas travel was booked for today, months ago.  For newcomers I’ll say more at the bottom of this post, but first, my message to the participants.

PCORI’s charter – its very name – is to develop Patient Centered Outcomes. That raises the question:

Who gets to say what’s patient-centered? We should.

The scientific establishment won’t turn on a dime with this one patient weekend, so what COULD we persuade PCORI and the attending scientists about? My view:

To me the core question of the weekend is: Who gets to say what’s patient-centered? I say, it’s the one who’s in the center. Who else could possibly know if things are balanced around them?

So, I suggest: in any patient-centered outcomes project, patients should participate not just in selecting projects or goals/outcomes (from a scientist-generated menu), but in defining the goals, the desired outcomes, even what they’d like researchers to pursue.

This is a maturing of the patient’s role, and a shift in the researcher’s role to one of partnership rather than “doctor knows best.” The maturing seems to parallel how a kid grows up:

  • A toddler is put in the back seat of a car and is taken where the parent knows they should go.
    • That’s straight-up paternalism: parent takes care of kid, who doesn’t understand the issues and can’t take care of self.
  • An older kid doesn’t need a car seat and may be asked “Where do you want to go?” from a parent-selected menu: playground? movies? beach?
    • That’s a bit of autonomy, with constraints defined by the caretaking / paternal parent who still has much better judgment.
  • At some point the kid is just asked “Where do you want to go?” or even “Where do you need to go?”
  • And at some point the kid (surely now an older teen) gets to set the agenda: s/he defines what’s important (their own priority), when to go, how to get there, what to do if the first choice doesn’t work out, etc. (And this role involves responsibilities as well as autonomy.)

(Side note: my favorite thinker on patient autonomy is Angela Coulter – google her.)

So here’s a possible outcome for this PCORI weekend: can we agree, as a core part of the PCORI culture, that it’s time for patients to move into the front seat, and be part of the process from the very beginning?

Patients could shift from just
selecting from scientist-defined outcomes
to helping specify what objectives would be valuable
in the patient’s view, and
even how the results should be evaluated.

(This is a direct parallel to SPM‘s definition of participatory medicine: “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” This takes it to the level not just of health care, but to the development of treatments.)

I’m not saying the mental shift will be trivial – PCORI would truly be creating something new, a real culture change with far-reaching implications. Hooray!

But how to do it??

And THAT question could be one great objective for PCORI’s next 12 months: start learning how to do it well, to create a model for all future PCORI projects! Wouldn’t that be great?

It’s sure to involve some clumsiness at first, the same as any other culture change. Like clumsy 8th-graders learning to dance, we’ll step on each other’s feet. But everyone involved is smart and committed, and if we share a sense that there’s REAL VALUE to be had, we can figure it out.

And we have PRECEDENTS:

  • Perry’s Parkinson’s Pipeline Project – patients trained to work with researchers in the design of studies
  • Probably some of Kelly’s colleagues in her RAWarrior community and Rheumatoid Patient Foundation
  • Probably numerous others at this workshop, and many more who aren’t. (Add some in comments here!)

I know this is a last-minute idea so it’s not clear the weekend’s agenda will include a pathway to this outcome. … that’s what happens when ideas arise on the fly. But people there can talk to each other, and I know the leaders are committed to figuring out what “patient centered” really means.

In fact, heck, maybe THAT’s the #1 outcome we want from the weekend: agreement that PATIENTS get to say what’s patient centered and what’s not. Maybe everything else follows from that. And maybe it ought to be a formal resolution.

As I say, I wish I could be there.  I also wish I’d been able to write this a week or a month ago, but ideas always seem to flesh themselves out for me in the “now,” not in advance.

As I said in my parting email to the advisory group yesterday: Be wise and strong. This is important work.


Background on PCORI and this workshop

If you’re new to this, here’s some information.

Here’s the workshop description on PCORI’s site:

Transforming Patient- Centered Research: Building Partnerships and Promising Models – October 27-28

This workshop will focus on the patient’s role and perspective in PCORI’s work, and provide an opportunity for patients, caregivers, advocacy groups, researchers and other stakeholders to start working together as a community to discuss potential ideas for future research.

It also will support PCORI efforts to raise the standards in the science of patient engagement by developing promising policies for identifying research questions, reviewing funding proposals and ensuring patient participation throughout the process.

Attendance is limited to 150 people; 75% of workshop invitations will be reserved for patients, caregivers and organizations representing them.

Look at that: 75% of attendance is actual stakeholders! Well, some are professional representatives, but a LOT of attendees are actual patients – including real live sick people! Imagine!

On a prep call the sick people, being empowered and responsible about their energy etc, spoke up and asked for things like a quiet place to rest if they need it, sufficient break time, and to have a nurse on-site. And PCORI said yes to every bit of it, and it’s all happening, today.

Plus, the patient attendees are not just having their expenses paid, they’re getting paid for their time.

Yes, a government-created health agency that is putting its money where its mouth is, and funding some patient participation.  (It’s not a lot, but it’s a huge breakthrough. It’s a precedent.)

The context is our prior discussions that this is big stuff going on: PCORI and its patient advocate advisor group are seriously facing the task of changing culture; not just the culture of medicine, but the scientific establishment. That’s a biiiiiig project, one that won’t complete quickly.  But it’s real and valid: these are wise, smart patients who are informed enough to raise legitimate questions about whether the scientific method itself is being put to the best use.

7 comments to Who gets to say what’s patient-centered? (Hint: the one who’s IN the center)

  • Your thoughts echo what I wrote some years back: if we don’t experience it, it hasn’t happened. My context for that was “care” (a word I avoid using anymore); as in “If my patient-family hasn’t experienced care, then care hasn’t occurred.”

    The right to self-define, it seems, must be taken back again and again because, it seems, it’s either taken away, or outright stolen, again and again.

  • Sherry Reynolds @Cascadia


    Glad to hear more and more people are moving from the “give me my damned data” to real patient centered design that many many of us have been advocating for, doing and sharing for more then a few years (and in some cases decades).

    It always amazes me that those that are new to patient advocacy forget or don’t know the lessons we learned from the women’s health movement, the AIDS community, 60 year old organizations like Group Health Cooperative and how apply it to new areas. Or how often we want some other powerful organization to recognize us vs simply making the change happen ourselves.

  • Susan Nelsen


    Thanks for a wonderful post and for all you do!

    I hope you don’t mind me sharing a quick story. I have brain cancer and last spring I attended a wonderful brain cancer symposium that my local university sponsored and allowed patients to attend for free. The keynote speaker was a brilliant man with lots of passion for his research. One of his challenges that he shared at the conference and asked others to join in his fight, was how hard it is to get clinical trial approval for novel ideas to fight the most aggressive form of brain cancer, glioblastoma multiforme (GBM). This disease has an average life expectancy of 18 months. After his presentation I asked if he had sought out help from any of the brain cancer patient advocacy groups. I suggested to him that the best way to get research approval to move quicker would be to have patients say that they were willing to risk their lives, even if animal models had not proven the therapy yet.

    Patient centered care has so much possibility and hope and on so many different levels. Thank you to the patient representatives and advocates that attended PCORI and for all of you out there that continue to give a voice to the cause for those of us who might not have the energy or resources to do so!

  • [...] enough that there are many questions about what “patient-centered” will look like. My friend Dave deBronkart describes the historical shift with a car analogy: that patients are moving into the front seat of [...]

  • [...] a big PCORI meeting this fall I blogged my current sense of the problem: Who gets to say what’s patient-centered? (Hint: the one who’s IN the center). But I didn’t yet realize where the disconnect arose from, because I wasn’t yet immersed enough [...]

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