HRA at the Patient Engagement Open Forum

At the Health Research Authority (HRA) we are committed to promoting and encouraging public involvement throughout the health research sector and in our own work. We’re proud of the progress we’ve made so far but we’re always looking for ways to improve.

This is why I was delighted to attend the annual Patient Engagement Open Forum (PEOF). The event sees more than 200 patient involvement leads, patient representatives, and people with lived experience, from around the world come together to collaborate and foster innovation to bring public involvement to life. The event is co-organised by Patients Forum Made with Patients, the European Patient's Forum, and the European Patients’ Academy on Therapeutic Innovation. The HRA has been attending the event for the last five years and this year was my first time attending.

During the first day of the event we heard from speakers from international organisations such as the Michael J. Fox Foundation and Japan Partners for Patient Centric Care who discussed the transformative potential of patient experience data. This includes information collected by GPs, clinics, support workers, allied health professionals, as well as quality of life questionnaires, and patient reported outcomes collected during the course of research. In response, as a group we contributed suggestions, barriers, concerns and opportunities for building a roadmap to support the use of these many different forms of data to enable the voice of patients through their data to richly inform healthcare.

During the second day of the event, we discussed how to revolutionise clinical trials for diversity, equity and inclusion. I was able to share our experiences and resources from the UK, and talk about the diversity and inclusion guidance that we are developing with the Medicines and Healthcare products Regulatory Agency. The guidance will support researchers to include under represented and often excluded people in their research.

There was a lot of interest in our Shared Commitment to Public Involvement. Specifically, the work we are doing via the Shared Commitment, with our 24 partner organisations, to improve collaboration and break down the barriers so that we are working in synergy to improve public involvement with a shared common purpose.

My main takeaway from this years’ event is that together we can translate an expectation of being included to something that is indispensable to excellent health and social care research.

I feel inspired and enriched by my time at the PEOF and I look forward to implementing some of the things I have learned at the HRA.