MELD-B Research Project: Meet Lynn

Introducing Lynn

Lynn followed the usual path of education, career, family, friends and sport, playing national league hockey. She spent her professional working life in the NHS until becoming unwell about 10 years ago. What followed was a 4-year journey to being diagnosed with a rare disease and multiple long-term conditions. The prolonged illness led to her taking early retirement at 50. From this drastic life change, she reflected on how she thought she knew what patients thought and what they wanted because she worked with them every day. It took becoming a patient to realise that she didn’t have a clue.

The path to getting a diagnosis was long and stressful. Lynn was health literate, due to her health service background but not particularly research literate until she started trying to find published research that would help her. She got involved with charities that supported her medical conditions and then discovered patient and public involvement (PPI). It made sense to her that involving people with lived experience of a condition could only help, not hinder, because actually no one cares more about research than the people affected by it. Lynn didn’t feel ready to retire when ill health forced the issue, she wanted to keep her brain active and being a public contributor was a great solution.

Most of the involvement Lynn has with research (and it’s a lot!) comes via Twitter where she’s made numerous contacts and found many opportunities. She’s worked as a peer researcher, been part of a small team co-producing a piece of qualitative research, helping to write the grant application and doing the qualitative interviews and the analysis. The team has written a policy report which will hopefully be published soon and are working on an academic paper. Lynn reflected on her involvement journey and commented that there is a slight kind bittersweetness about becoming unwell, as it provided opportunities that she could only have dreamed of.

Lynn's role on the MELD-B Project

Lynn has not had any formal training in research, she did lots of reading and has benefitted from people investing the time to mentor her. She met Simon, the Principle Investigator at a PPI event who invited her to take part in the Meld-B study (Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity) research project. Lynn feels very passionately about some of the terminology used and has highlighted the negative assumptions connected with “burdensome”, asking “whose burden is it anyway?”. She explains that in simple terms, this study is about looking at how lifecourse events can have an impact on developing multiple long-term conditions. The team are also concentrating on how multiple long-term conditions can be prevented and are utilising artificial intelligence to assist.

Lynn is on the Patient Advisory Group for the Meld-B study and expressed how important it is for researchers to work with people who have not just one or two conditions but lots, to get a full insight. She has been involved in work package 1 (a defined section of the project) that deals with the understanding of how published qualitative research defines “burdensomeness/complexity”. At the other end of the study, work package 5, Lynn has worked on podcasts as part of the dissemination of the study’s findings and the formulation of policies.

The role of a contributor is extremely varied, and Lynn said the Meld-B team have been willing to work with her as an individual and carve out a role within the project that encompasses her interests and experience, encouraging and valuing everyone’s opinions. She feels that patient and public involvement is vital to help understand each individual’s context; people living with multiple long-term conditions aren’t all the same! Just because science can do something, doesn’t mean it should, so a patient may say that they don’t want a treatment that gives them 5 more years of a poor-quality life. That’s the reality and this perspective really needs to be understood. People are living, breathing and feeling and shouldn’t be reduced to a research data point, so Lynn poses the question “are we measuring something because we can or because it’s meaningful”?

Lynn’s hopes for the future are that beyond presenting the findings from the Meld-B study, we strive to really understand what's important to people living with multiple long-term conditions to help shape the way research is conducted. I want people living with multiple long-term conditions to be able to look at the research findings and say “yeah, they got me, this research understood what is important to me”.

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