Guest blog: Working in collaboration to improve patient and public involvement in research

Making Connections

In the Making Connections project, we looked to develop relationships with local community organisations with the aim to address the underrepresentation of underserved communities in health research and the lack of community-focused research. In collaboration with Hatch and public partners, we created an event to talk to representatives of community organisations about the importance of health research, reflecting the needs of all communities and the role community organisations can play.

In this project, we worked with Hatch to design the project and evaluate the event’s success. From working with Hatch, we learnt:

• The value of a theory of change in planning projects and activities. Although we have heard of a theory of change, it’s not something we regularly use. Hatch led a theory of change workshop to discuss our aims, what we hope will happen, what the risks or challenges may be, and the impact of the event and wider project. This discussion was incredibly valuable to find out the different perspectives of team members, and challenges raised that we had not previously considered and explore a way forward that extends beyond the event.

• About the Matter of Focus approach. The discussions leading to the creation of the theory of change followed an approach called ‘Matter of Focus.’ This approach can be used when working towards a vision for social change. With this project, we were looking to ultimately change the relationship and ways of working between underserved communities and academic and healthcare institutions. Hatch kept the discussions focused on this end goal, leading to richer conversations with the public partners.

• The adaptability of evaluations. Hatch designed surveys for event attendees to complete immediately after the event and again three months later to see whether knowledge and behaviours around public involvement have changed. Hatch met with us regularly to discuss the questions that needed to be included and the wording of the questions. The three-month post-event survey was altered based on conversations from the event, which led to changes to the project’s direction.

• That working with Hatch is an enjoyable and truly collaborative experience. We met regularly with Hatch in this project to discuss plans and concerns. Having the opportunity to have open and honest conversations with Hatch was vital to the success of the project and solidified the collaborative nature of our units’ work.

Evaluating public involvement and engagement in health and care research

In the Public Involvement & Engagement in Research (PIER) project, the team worked together to explore how public perceptions of their influence in the research align with what is reported by researchers. The aim was to co-develop a prototype survey to collect information from patients and the public about their impact and influence on research projects.

ADC supported Hatch with the evidence review exploring published literature about the experiences of patients and the public involved in research. Despite the time taken to review the literature, it was a great activity to work with Hatch on. We regularly had open conversations about the review process, such as difficulties relating to coding and identifying the exclusion criteria – with both units open to questions and learning. Working with Hatch also gave us the opportunity to test out a new reviewing platform alongside them for the purpose of this evidence review. Throughout this project, the Hatch team were responsive to our questions and comments and open to learning about different aspects of patient and public involvement.

Hatch’s perspective

When talking to Hatch about how they found working with us on the PIER project, they highlighted the following:

• ADC advised on refining our search strategy. They suggested alternative and more appropriate search terms so we could tailor our search and improve our search results. For example, they advised on the global terminology used to describe PPI. For instance, they pointed out that while “PPI” is commonly used in the UK, other countries might refer to it with different terms which helped with our own understanding as well as our decision-making for inclusion or exclusion.

• ADC guided us in establishing clear and relevant inclusion and exclusion criteria for our literature review. They helped us decide which studies and articles to include, considering aspects like the types of PPI activities.

• ADC shared insights and experiences that helped us understand the various types of PPI involvement in the literature. Furthermore, that certain definitions used when involving patients and public in the field are sometimes not clear-cut, which helped with some hurdles in the interpretation and categorising of the findings when doing the thematic analysis of the literature.

• They were available to answer questions, clarify doubts, and provide further guidance in the realm of PPI research as well as our own engagement with the public.

 Why work with Hatch?

Working with Hatch has given us a perfect opportunity to expand our knowledge of all things evaluation. The ADC enjoyed working with them—Hatch was friendly, responsive, and open to new ideas. From this work, we identified areas for future research directions and opportunities to continue working with each other. I recommend other organisations explore how they can collaborate with Hatch in their work, as their input will add further value and support shaping your projects for the better.

Katie Porter
Research Inclusion Manager, National Institute for Health and Care Research

*Katie Porter is a former project manager from ADC. ADC ceased operating at the end of July 2024