Ronnie Sharpe (Rare Patient Voice) recently noted on LinkedIn that a lot of what is supposedly “patient-centered” is instead “patient-decorated.” That’s been my experience too often. Frequently people in the medical community claim to be all about being patient-centered or patient-focused, but when push comes to shove, and patients say something they don’t want to hear, we get a pat on the head and a condescending response about how we’re so adorable when we speak up, but we don’t know what we’re talking about. Which gives them an excuse to discount what we’re saying instead of listening. And if they won’t listen when the patient voice is hard to accept, then whatever results they generate aren’t patient-focused, they’re just patient-decorated.
So what does it mean to be truly patient-centered or patient-focused, and what should patients and advocates be demanding? I’ve seen a lot of individual demands over the years, and have a few I believe in myself (we need patients on Institutional Review Boards and medical journal peer review panels, and the default at the FDA should be including patients in all meetings with pharma, instead of letting pharma decide whether we’re present), but I’ve never really seen a compilation anywhere before now. The Center for Innovation and Value Research recently published a “Blueprint for Patient-Centered Value research,” which has some solid suggestions and explanations for why true patient engagement is beneficial for everyone.
The Center for Innovation and Value Research is a nonprofit (note the dot-org ending of the URL) independent research organization founded in 2019. Their Blueprint is intended to “provide a structured framework for integrating patient perspectives throughout the research process.” Their focus is on what they call “Health Technology Assessment (HTA),” which is intended to balance the benefits and costs of various medical treatments (“health technologies” encompass all sorts of treatments, e.g., pharmacological, surgical, prosthetics, therapy), and they seem to have adopted a lot of the principles of Patient-Centered Outcomes Research Institute (PCORI).
I encourage you to read the whole thing, but the big takeaway for me is their focus on collaborating with patients and caregivers early and often throughout the research project. They recommend co-development of the research questions (it’s vanishingly rare when we’re consulted that early), getting patients involved before the research even begins. Then, including patients/caregivers on an ongoing advisory panel that can participate in establishing endpoints (goals of treatment), reviewing protocols, and providing feedback to everything from initial results to the final product (publication, etc.).
Finally, they recommend something that’s on my personal wish list: “Invite patients and caregivers to co-author reports and/or publications ….” Recently, I’ve seen both good and bad treatment of patients in publications about standard of care for XLH. In the best examples, the authors have engaged directly with knowledgeable patients in developing those standards of care, and then recognized the patients’ contributions by naming them as co-authors. In the worst, there’s no mention whatsoever of engaging with patients or acknowledging any input from patients. Something in the middle is what I see most often—there’s a blanket mention of the existence of patients (and sometimes a patient advocacy group) without acknowledging our expertise or insights.
Patient advocates have a long way to go to before we’re more than “decoration” in medical research, but this blueprint, if adopted more widely, would be a solid first step.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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