The Problem With PPI: How Health Research Confuses Involvement With Leadership
From NIHR governance gaps to the Patient-Led Research Collaborative - why the fix isn't more involvement, it's different standing.
Series: Letters to the System · Letter 3 of 6
To: Stroke and neuroscience researchers running PPI panels
PPI panels operate on a familiar sequence. Researchers design a study. They write the protocol. They submit the ethics application. At some point in this process — usually after the study design is fixed — they invite people with lived experience to review what has been built.
The feedback is recorded. The protocol proceeds more or less as it was designed to proceed.
This is not an exception. It is the standard — and it is the problem.
The evidence confirms it. What looks like a failure of individual researchers is, in fact, the system working exactly as designed.
The NIHR — the body that funds most health research in the UK and sets the standards for how it’s done — has six standards for public involvement. They’re genuinely well-intentioned. One of them covers governance: whether public voices are “heard, valued and respected in decision making.” What independent evaluations have found, consistently, is that governance is the standard most poorly implemented across research institutions. Evidence of participation in decision making, yes. Evidence of opportunities in management, regulation, or leadership — far less.
We’re invited to comment. We’re rarely invited to decide.
And there is a difference. A significant one.
The product frame makes the structural failure visible.
Imagine a product team building a navigation app for people who are blind. They run six months of user testing — does the button feel right? Are the instructions clear? Is the voice prompt too fast? — and then they ship.
What they didn’t do is ask blind users whether a navigation app was the right solution to the problem. Whether the problem was navigation at all, or whether it was something else — social isolation, professional access, the feeling that the built environment wasn’t designed for them. They tested the product. They never tested the premise.
That’s what most PPI is. Usability testing. The researchers already decided what they were building, and they invited patients in to check the experience of using it.
In product design, this has a name. It’s called building in isolation. And it is — in every serious product team in the world — considered a failure mode. The entire discipline of user-centred design exists because of the catastrophic results of building things without the people who need to use them. You don’t know what the user needs by looking at the spec. You find out by making the user central to the design process from the first question, not the last.
Patients are the customer of health research. They are the end beneficiary. Their lives are the thing being improved, or not. And the current PPI model — late-stage, advisory, compliance-driven — is health research’s equivalent of user-testing a finished product and calling it co-design.
It isn’t. And any product team worth working with would tell you exactly why.
There is a second problem the product frame makes equally visible: academic research is not built to iterate.
In tech, agile methodology exists because building the right thing requires a continuous feedback loop. You don’t define requirements once, develop in isolation for years, and ship. You work in cycles — testing with real users, learning from what doesn’t work, adjusting before the next sprint. The architecture assumes that the right answer will be discovered through the process, not predetermined before it starts.
Academic research runs on the opposite logic. A question is defined, funded, and investigated over years. It produces a paper. That paper may eventually influence clinical guidelines — over further years. The patients consulted at the outset are not in the room when the findings are published. They are not told what was found. They are not part of a next iteration, because there typically isn’t one — each study is a discrete project, not a sprint in a programme of continuous improvement.
This is research as an exploratory journey with a paper at the end. Not a product with a defined outcome, defined beneficiaries, and a feedback loop that brings findings back to the people who helped shape the question.
The distinction matters because it determines what accountability looks like. Products succeed or fail against user outcomes. Papers succeed or fail against citation counts and peer review. These are different definitions of success — and patients feature in one of them, but not the other. The loop is never closed.
I wanted to know what it actually looked like when lived experience held genuine authority. Not as a thought experiment — in practice, in named examples that are working.
The Patient-Led Research Collaborative was formed in April 2020 from a COVID support group on the internet. The core team — people with Long COVID, who also happened to have research skills — launched their first survey on 21 April 2020. They published findings on 11 May. Eleven days. That report was the first published research on Long COVID anywhere in the world.
No academic institution had led it. No ethics committee had been sitting on it for six months. Patients with the condition decided what mattered and went and found it out. The PLRC now administers $4.8 million in biomedical research funding. When they fund external studies, they require paid patient representatives involved at every stage — from design through dissemination. Not reviewing the completed protocol. Co-authoring the question.
That’s not patient involvement. That’s patient leadership. The distinction is the whole argument.
The Stroke Foundation of Australia’s Living Clinical Guidelines give me a more nuanced example — and a more honest one, which I think is important.
They have a Consumer Panel of 35 stroke survivors and carers. Thirty-five named individuals, listed publicly on the website. Not an anonymous advisory group. And two of those individuals — Toni Arfaras and Kevin English — sit on the Content Steering Committee. The governance body. The table where clinical recommendations are ratified.
I want to be honest about what this is and what it isn’t. The Steering Committee is majority clinical. Final ratification still sits with a group where lived experience is in the minority. But Arfaras and English are there. Named. With the same procedural standing as the neurologists and the occupational therapists and the research leads.
That matters because of what it signals about whose expertise is considered necessary — not supplementary — to making decisions.
Jo Evans is a lived experience researcher at King’s College London who has spent her PhD studying how patient and public involvement actually operates inside universities. Her finding: “Although PPI is mandated by a lot of funders, there’s not really the space or funding to do it properly. That rigidity can lead to tokenistic and consultative PPI.”
Sally Strange has been a member of the Maudsley BRC’s Service User Advisory Group since 2011. She says something I keep coming back to: “Not so much when it’s tokenistic — it can be retraumatising. But done properly, it’s fantastically rewarding.”
Retraumatising.
That word is doing a lot of work. Being asked to contribute the hardest experience of your life — the one you are still living — and watching it used to tick a box on a funding application, or to confirm a design choice that was already made before you arrived. That has a cost. It has a name. It isn’t just inefficient. It’s harmful.
I’m not writing this to make researchers feel defensive. I genuinely believe most people working in this space want to do it well. The problem is not the people.
It’s the architecture.
The architecture says: involve the public. It doesn’t say: give them decision rights. It says: document their contributions. It doesn’t say: pay them what you’d pay a clinical consultant for the same number of hours. It says: include a PPI statement in your protocol. It doesn’t say: require that lived experience was present when the research question was first formed.
The structural fixes aren’t complicated. Named co-investigator status on grant applications. Remuneration parity. Inclusion at scoping stage — before ethics, before the protocol, when the question is still being shaped. Named authorship on outputs. Defined right of review at each decision gate.
These aren’t aspirational. They are administratively implementable. The system has working examples. It has chosen not to require them.
Paul Quinn — a stroke survivor, patient advocate, and one of the clearer voices on this on Substack — writes that the biggest non-physical impact of stroke is the loss of agency. Of self-worth. Of feeling like your experience has value in a world that seems to have moved on without you. Real patient advocacy — with standing, with authority, with continuity — can reverse that. The current PPI system is leaving that possibility on the table.
The system has working examples of what better looks like. It has chosen not to require them.
There is a version of health research that treats patients as the customer — not commercially, but in the product sense: the people whose lives are the measure of whether the work succeeded. Research that scopes the question with the people it is trying to help. That shares findings back to the communities that informed them. That brings the learning of one study into the design of the next. That closes the loop.
That version is not aspirational. It is administratively possible. What it requires is not more involvement — it is the architecture of accountability that any serious product team would recognise as basic practice.
The standards need to require it. Not recommend it. Not encourage it. Require it.
And the patients who contributed — who were thanked, whose input was noted — should be the first to hear what the research found.
Sources:
UK Standards for Public Involvement in Research, NIHR/INVOLVE — sites.google.com/nihr.ac.uk/pi-standards/home
Using the UK Standards for Public Involvement to evaluate the impact of public involvement in a multinational clinical study — PMC8088001
Patient-Led Research Collaborative: Embedding patients in the Long COVID narrative. Pain Reports, 2021 — pubmed.ncbi.nlm.nih.gov/33987484
PLRC website, research and Patient Engagement Scorecards — patientresearchcovid19.com
Living Clinical Guidelines for Stroke Management — Guidelines development process. Stroke Foundation Australia — informme.org.au/guidelines
Paul Quinn (theesk). Patient Advocacy and Peer Support for Stroke Survivors. Substack, Aug 2025 — theesk.substack.com/p/patient-advocacy-and-peer-support
Paul Quinn (theesk). What stroke survivors want you to know, how it helps & the value of lived experience — theesk.substack.com/p/what-stroke-survivors-want-you-to
Beyond Tokenism: Making Lived Experience Leadership Visible in Co-Produced Research Authorship. Randal & Heinz, Health Expectations, 2026 — doi.org/10.1111/hex.70665
The Ultimate Power Play in Research — Partnering with Patients, Partnering with Power. Research Involvement and Engagement, 2025 — doi.org/10.1186/s40900-025-00745-9
Beyond Tokenism: Lived Experience in Mental Health Research. Jo Evans & Sally Strange, NIHR ARC South London, Feb 2026 — arc-sl.nihr.ac.uk
A Seat at the Table, But on Whose Terms? The Illusion of Meaningful Engagement — pubmed.ncbi.nlm.nih.gov/41211050
The Importance of Lived Experience: A Scoping Review. Mah et al., Health Expectations, 2025 — PMC11938292
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