What Real Co-Creation Looks Like: A PPIE Perspective on Rare Disease Research
Linda Fred (Independent Social Impact & Community Development Consultant, Clever Cog)
Aimee Walker-Clarke, (Assistant Professor, Coventry University)
More than 3.5 million people in the UK will be affected by a rare disease at some point in their lives. Yet for most of them, the path to diagnosis and support follows a depressingly familiar pattern: years of uncertainty, dismissal by medical professionals, and a system that expects patients and carers to hold everything together with no real help.
RareCare is a research project running between May 2024 and June 2026, led by a team across several UK institutions. Its aim is to determine whether the UK Rare Disease Framework is actually benefitting the people it was designed for, and to produce practical outputs for patients, carers, and service providers. I was involved as a Patient and Public Involvement and Engagement (PPIE) contributor and trained as a Peer Researcher, working alongside Aimee and Nikki (researchers at Coventry University). What I experienced was unlike anything I had encountered before in this space.
The Problem with most PPIE
I will be honest: too often, involvement in PPIE feels like a box-ticking exercise. You are invited to sit in meetings for appearances, consulted only after decisions have already been made, or included without the support you need to contribute anything meaningful.
Being black, a woman; and living with a debilitating health condition almost make me a unicorn in this space and I have unfortunately too often been that token voice in the room there, just nodding along and simply grateful just to be invited in hopes no matter how big or small I manage to create an impact where change can start happening in the rare disease space.
That is my experience of PPIE often looks like in practice. But let me describe what it looked like in this instance.
True Co-Creation: What It Actually Looks Like
This project felt different from the start, and a significant part of why comes down to who was running it. The project coordination, led by Aimee & Nikki, set a tone I was not expecting; it was structured, meticulous, and genuinely supportive. We received training, support, and recognition. I came away with a formal qualification as a result of my involvement, which is not something I had ever received through PPIE work before.
What struck me most was the culture that was built throughout the training, interview, and supervision phases. There was real attention to creating safe spaces where we as PPIE contributors could speak honestly, ask questions without embarrassment, and easily flag when something was not working.
Everyone across board (including the university ethics team) was very much engaged, which enabled us to be able to action change in a timely manner – without having to wait weeks and weeks for suggestions to be run up the oblivion of the “command ladder” (again, a common experience). Instead, we as PPIE contributors/peer researchers were involved in shaping the research questions, not just answering them. We had influence over methodology and interpretation. We were treated as equal experts alongside academics with complementary forms of knowledge, not lesser ones.
Genuine PPIE involvement looks like:
- Lived experience shaping the research from the outset
- Contributors supported to engage meaningfully, not just to attend
- Feedback on how input was used, not just acknowledgement that it was given
- Flexibility in timing and format to accommodate different circumstances
- Access to debriefing when the subject matter became emotionally heavy
None of these are radical ideas. They are just good practice, consistently applied. And most importantly, we were actively encouraged to shape the process, not just show up for it. That mattered more than most people realise.
Building on what I learned through working as a peer researcher on this project, I went on to develop two toolkits designed to support PPIE practice more broadly. Both draw on the principles I experienced firsthand: clear communication, structured support, and a genuine respect for what contributors bring.
The Language Problem
In our team reflection sessions, we often discussed how language barriers – not just actual language barriers (although that is another issue), but terminology & vocabulary – can prevent PPIE from working effectively in research settings. Scientists, academics, and patients all operate in different dialects of expertise. None of those dialects is lesser. But if the system only accommodates one of them, you lose the others.
In this project, the approach was to translate, not to ‘dumb down’. Complex concepts such as Thematic Analysis were made accessible without the assumption that PPIE contributors could not handle them. Nobody was born understanding clinical terminology or research methodology; scientists spend years learning their field. The same patience should be extended to people coming in from a lived experience perspective.
Starting from shared understanding and building together across the life of the project is what makes that possible. And it is what allows PPIE contributions to be genuinely valuable, not just symbolically present.
What We Heard in the Interviews
Once the research interviews began, something became very clear, very quickly. Although rare diseases vary enormously in their nature, our experiences as the people living with them were strikingly uniformed. Almost everyone had faced the same gruelling diagnostic journey. Almost everyone had felt as if they had been gaslighted by the medical professionals who were supposed to support them.
Participants described never being allowed to simply be unwell. Instead, they were constantly managing communication between different service providers, chasing referrals, translating between departments, and holding the system together through sheer force of will.
Carers also spoke about travelling across the country with little to no financial support, having to cut back hours at work to do so. About never really getting the space to simply care for their loved one, because they were always forced into an operational role, by wearing many hats at once with little to no consideration by medical professionals.
None of this is new information. But hearing it, consistently, across condition after condition, makes not only it impossible to dismiss, but equally, frustrating; knowing how much work and studies are carried out in the rare disease space, why does it often feel like nothing ever changes?
When the Research Itself Needed Protecting
One challenge we had not fully anticipated was the appearance of fraudulent participants. Some individuals had signed up in the hope of receiving the Amazon vouchers offered as a participation incentive, with no genuine connection to rare disease.
When this emerged, our peer researcher team had to adapt quickly. We developed more robust vetting procedures and implemented an internal review process, checking participant details and cross-referencing information to identify inconsistencies. From that experience, I created a toolkit called Safeguarding Research Integrity, which my fellow researchers and I used throughout the project. The toolkit provides guidance, checklists, and templates to help researchers verify participants, spot potential inconsistencies, and protect the genuine voices that studies like this depend on.
The families who shared sensitive, personal information with us had trusted us with something precious. It felt like our duty to honour that and do everything to ensure that genuine voices were heard.
Why all of this matters
The UK Rare Disease Framework sets out a vision for improving the lives of people affected by rare conditions. Whether that vision is being realised in practice is exactly what we worked on understanding.
From where I stood, doing the interviews, analysing what we heard, and sitting with the weight of those testimonies, the gap between aspiration and reality is still significant. People are still fighting systems that were not designed with them in mind. Carers are still being stretched to breaking point. Diagnoses are still taking far too long.
But the way we approached this research gives me reason to be optimistic. When patients and carers are treated as experts rather than subjects, when PPIE is built into the foundation of a project rather than bolted on at the end, the quality of what you produce is fundamentally different. More accurate. More relevant. More humane.
That is not a soft benefit. That is the point.