As we join with other partners to celebrate the third anniversary of the Shared Commitment to Public Involvement, it is a good opportunity to reflect on our work over the past year. As an organisation, we recognise the value that involvement adds – from challenging assumptions to improving the rigor and relevance of research. That is why one of our top priorities over the last year has been developing internal resources and tools that support colleagues across the organisation in involving patients and the public in our projects and programmes.

Creating a Patient Engagement Framework

To help guide this work, we formed a Patient Engagement Advisory Group of people with lived experience and expertise in public involvement. Some of these people had partnered with us before on involvement activities, and others were new to LifeArc, resulting in a rich range of perspectives in discussions. The Advisory Group helped broaden our thinking and ensured that the patient perspective was represented in the project.

Involving our people in the development process was crucial to ensure we developed a resource that would add value. It was also an opportunity to understand more about people’s perspectives on involvement, including challenges, opportunities and roadblocks. At LifeArc, everyone is driven to create meaningful impact for patients so we wanted to ensure that everyone had an opportunity to contribute, regardless of their role. Contributions were made via a survey, drop-in sessions, and more focused working lunch sessions, as well as through 121 discussions.

Importantly, these activities provided opportunities for people to bring both their professional and personal expertise to the conversation and recognise how our own lived experiences shape what we do.   

Some of the key priorities that emerged from the discussions included:

• the importance of developing a shared purpose for involvement.
• a need for more information about how to involve people in research, including guidance on key policies and processes, and access to templates to ensure consistency.
• understanding patient needs and priorities for research.
• ensuring patients feel valued for their input when getting involved.

The outcome of this work is the Patient Engagement Framework – an internal resource which explores the foundations of involvement in research and provides practical guidance for planning activities to help colleagues meaningfully involve patients and the public in our work.

In developing the Framework, we drew upon many of the existing resources that have been developed and published by other organisations across the sector. We are grateful to work with many partner organisations to share best practices, learn from each other, and work together to help support excellent public involvement in research.

Continuing to involve patients in our work

Alongside the development of the Framework, we have continued to build partnerships with patient communities and work together to shape research. People with lived experience have been involved in reviewing applications across a number of our collaborative programmes – including PACE, our MND drug repurposing call, and C-Further – helping to shape our decision-making on what research to fund.

We’ve hosted focus groups and workshops with people affected by MND, cystic fibrosis and bronchiectasis to better understand their experiences to help shape our research. We’ve also worked closely with patient advocates in the childhood cancer and rare disease communities to inform our strategy for research in these areas.

With our new framework in place, we are excited to continue our work collaborating with patient communities to transform scientific discoveries into lasting impact. We also look forward to working with Shared Commitment partners to share experiences, reduce duplication of efforts, and maximise our resources to ensure we optimise our efforts to amplify excellent public involvement in research.