The benefits of co-producing evidence synthesis : Lessons from co-producing the diabetic eye-screening systematic map

Background to the programme

We are working with the EPPI Centre (Evidence for Policy & Practice Information Centre) at UCL (University College London) and UCL Health Economics Policy Lab on a large programme funded by the National Institute of Health & Care Research (NIHR) to deliver high quality summaries of research (evidence syntheses) to inform health and social care decision making across the UK. This programme of research is known as London Alliance for the Co-production of Evidence Synthesis – or LACES for short. It runs for five years and involves co-producing 3-5 evidence syntheses per year on a wide range of healthcare, public health, and social care topics.

One of the projects in this programme aimed to develop a systematic map of the evidence on the implementation of screening programmes for diabetic eye (a map that helps organise and visualise the results of the evidence synthesis on these screening programmes, making it easier to identify research gaps). Diabetic eye (also known as diabetic retinopathy) is the most common complication of diabetes and can lead to visual loss and blindness if left untreated.

This project brought together two co-producers, Sarah Markham and Sara-Jane McAteer to work as part of the research team. In this blog they share their experiences along with Silvy Mathew, one of the project’s researchers, and reflect on the benefits of co-producing evidence synthesis.

What is evidence synthesis?

Evidence synthesis is a way of combining and making sense of evidence. Local, national, and international decision-makers often use research evidence to inform decisions about how best to use resources to deliver health and social care. Millions of pieces of research are published every year. It is a big task for policymakers and practitioners to look at the research when they make decisions.

Evidence synthesis involves bringing research studies on a specific topic together, assessing whether they are trustworthy, and summarising the findings. When done well, it can ensure a complete, fair and reliable picture of the relevant evidence available. By using this approach, decisions (for example in policy or how clinical care is delivered) can be informed by more research, than the decision-maker is likely to have time to read.

Our co-producer’s perspective

Sarah’s insights

I am Sarah Markham (a mathematician and passionate public contributor). I have lived experience of type two diabetes and less than optimal vision. I was very excited to be given the opportunity to be involved in a project seeking to better understand diabetic retinopathy screening through a review of the relevant research literature. Retinopathy screening is important both as an initial step in diagnosing and managing diabetes for those in need, and for identifying and treating retinopathy itself. I entered the project with some prior Patient and Public Involvement and co-production experience on systematic reviews.

Previously, I was involved in creating a living systematic review of mental health research in the context of COVID-19 so I did have some knowledge to start with. That was very much a quantitative (numerical) data-based study. It was a well-designed rigorous study with a well-defined pre-specified plan as to how it would be carried out which we co-produced. It was different because the ‘living’ part meant it was published online before we began actually reviewing papers. I was given training and worked as a Patient Partner on every aspect of the review. - Screening at the title/abstract and full text levels, extracting and analysing data and co-authoring research papers.

The diabetic retinopathy screening project was quite different. Both a fellow co-producer and I were involved in this project, in the full-text data extraction stage but we were not involved in the screening stage. The reasoning was partly due to timings, and that it would be a better use of our time to focus on the data extraction step to gather relevant information from research papers, which did make sense. The plan as to what type of data we would be extracting was co-developed interactively over a number of sessions and continued to be amended as we began to extract the mainly qualitative data, and discovered what was really relevant to extract.

We also had numerous sessions where we reviewed what we were extracting, whether we were following the plan, and what, if anything, needed to be changed. This was a great experience, and we learned so much about both evidence synthesis and bonded as a group. It really enhanced everyone's appreciation and understanding of practice and innovation in diabetic retinopathy screening.

Finally, we were both able to contribute to writing up our findings which will hopefully be published and put to use in influencing policy and practice in future diabetic retinopathy screening.

Sara-Jane’s insights

I am Sara-Jane McAteer, a former University Administrator and current Public Advisory Board member for Health Data Research UK (HDR UK), and for the LACES programme. As a parent of a child with type one diabetes and a public contributor in health research, I was thrilled to be able to work on the production of an Evidence Synthesis map for the implementation of diabetic eye screening.

From the beginning I found that this was an opportunity to inform the project with my lived experience as a user of healthcare and also to work as a member of the research team. I was able to offer my skills and experience, not solely as that of a parent carer, but also from that of someone familiar with health communication and policy. I was happy to be able to attend and make contributions at the meetings with the UK National Screening Committee (UK NSC). At all stages, I made suggestions as to how to communicate the findings to a wide audience and gave contextual information about user experiences.

My day-to-day work involves contact with a wide range of individuals, many of whom experience ill health and other vulnerabilities. I am acutely aware of the intersectionality of needs and issues surrounding equitable participation in research. I am so happy to have had the opportunity to influence how the map was compiled.

I enjoyed working as part of a team and I was able to formalise my existing knowledge and learn more about evidence reviews. The work inspired me to study courses on Ethics in Research and on Artificial Intelligence in Healthcare. I also found that I was frequently able to apply my skills from past roles in data analysis to help me understand what can be fairly complex work. It was great that the team were always on hand and provided such a thorough level of support and training. I am looking forward to seeing the research published.

A Researcher’s perspectives

Silvy’s insights

I am Silvy Mathew and I’m writing on behalf of myself and my fantastic team members Alison O’Mara Eves (research lead), Rachael Edwards, and Katy Sutcliffe.

The results so far of us co-producing this work with our two co- producers show just how valuable co-production can be in evidence synthesis. Co-production allows us to work together and learn from each other, which helps us better understand the issues at hand and create meaningful solutions. Involving people with lived or carer experience of diabetic eye screening benefited everyone in the project. While our co-producers gained valuable skills through systematic review training and deepened their understanding of the topic by directly engaging with the research papers, we also benefited from this collaborative process.

As researchers, learning about real-life experiences clarified the concepts and improved our ability to interpret the studies. Our co-producers played a vital role in developing the logic model and data extraction tool (for example, they helped simplify concepts, codes within the map, and various dimensions of the logic model), ensuring that all important aspects of the screening process were included and easily understandable.

Their feedback enhanced the clarity of the information and strengthened the findings of the review paper (currently in the process of publication). This collaboration enabled our team to provide useful recommendations for policymakers that can truly benefit the target population.

Through this collaboration, researchers gained valuable insights on the topic and improved the accessibility of the research outputs, while Sarah and Sara-Jane gained new skills highlighting the magic that happens when we work together!

What’s next for the project

Hopefully, this collaboration won’t end here. We have already discussed how we can take this work forward.

For more information about the LACES project and team, please visit the project website.

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