We are so pleased to welcome Lynn Laidlaw to our HSR UK Board of Trustees! In this interview, Lynn introduces herself to the HSR UK community and offers some insights into what she hopes to achieve during her time with us...
How did you first get involved with research?
I became unwell around 10 years ago, and what followed was a 4-year diagnostic odyssey and I was eventually diagnosed with a rare, auto immune Rheumatic disease in overlap with an inflammatory arthritis variant. I have since gone on to develop multiple long-term conditions. In that time, I tried to research my symptoms and access research papers that could help. Many of these were behind paywalls or didn’t address the issues that I felt were important. That’s when I discovered Patient and Public Involvement (PPI) in research. It made sense to me that involving patients and the public as part of the research team could only help, not hinder. No one cares more about health and social care research than the people affected and, if I didn’t feel my unique insight and experiences could help, I wouldn’t waste researchers time, it’s too important.
What health services and social care research areas do you see as priorities for patients and the public in 2024?
That’s a challenging question! I am not representative of patients and the public but the issues I hear people talking about are quality of life as opposed to hard outcomes such as hospitalisation and 1 or 5 year survival. Access to health and social care services, relationships with people working in these services, and whether they are set up to meet the needs of the people using them are also common topics. Health inequalities are an area of real concern and the impact of the politics of austerity. Why is life expectancy and crucial years of healthy life falling for certain groups of people? I also feel the separation of health and social care and services set up around single organ specialities doesn’t feel holistic to people and makes navigating services challenging.
What made you want to become a HSR UK Trustee?
I was surprised and super chuffed to be invited to apply to become a Trustee. I had attended and presented at the last two HSR UK Conferences and appreciated both the quality of the discussions and the topics chosen for the sessions. I know and work with many health care researchers and value the relationship I have with them. I knew through conversations that I had with people who work for, or are connected with HSR UK, that they are committed to PPI in research. Becoming a trustee just felt like an amazing and exciting opportunity to become directly involved in the work of HSR UK with people that I felt I could trust and build a relationship with.
What do you hope to achieve in your time as a Trustee?
I feel that I need to split this answer in two. On a personal level it feels like a very steep learning curve, but I am looking forward to learning about what it means to be a trustee and become involved with HSR UK. Also, it’s difficult to convey what it means to be offered this type of strategic opportunity as public contributor. I feel a big sense of responsibility to prove that patients and the public deserve a seat at decision-making tables and can add value. I would also like it to become business as usual for HSR UK to have patients and public on the board. I am growing uncomfortable with the term “lived experience” even though I often use it. Why do we feel we need to define people in this way? Surely all that should matter is that people are willing to contribute all their relevant experience as a Trustee and be open about their positionality and perspective.
What do you see as the benefits of high-quality patient and public involvement in research?
I believe there are multiple benefits, but then I would say that! Perhaps one of the most pressing is that it can reduce waste by encouraging researchers to ask whether the topic being researched of interest to the people affected by that condition? Are the outcomes of the research meaningful as opposed to measurable? Is this research that people would participate in or is the work involved in participating too great? High quality PPI is values and principles driven and is founded on building relationships, having conversations, and collaborating. The magic happens when multi-disciplinary teams come together and the research meets everyone’s needs, not just those that are perceived. It’s also a right, nothing about us without us. Public money pays for research and citizens have a right to become involved in the decisions about what research that money should fund.
What do you think health services and social care research can do to improve patient and public partnership working?
I am a bit obsessed with the issue of power, culture, and hierarchies in PPI. Culture eats strategy for breakfast, and we can develop multiple frameworks and checklists for involving people that are doomed to failure if we don’t acknowledge that organisations and individuals need to promote a culture that values partnership working. I have had the opportunity and privilege to work as a researcher on a few co-produced research projects. This impacted on my identity and sense of self, we need to acknowledge that PPI and co production can impact on everyone’s identity, including researchers and clinicians. Working in this way can present challenges, but they need to be acknowledged and, what Sarah Knowles and collaborators term “productive tensions”, need to be embraced. Organisations and individuals in research need to cede power, as opposed to the widespread, I think, paternalistic notion of empowering patients and the public. Patients and the public have to wait for an invitation to join research projects, its not yet considered a right. Often the only power we have is the power to walk away from research teams that don’t value our insight and experience. That all sounds quite deep and dark but, in the 10 years I have been involved in research, I have seen change and remain hopeful for the future of PPI.