What difference is public involvement making to the HRA’s work? Creating diversity guidance for researchers

I was one out of three public contributors chosen to attend and help with three online workshops, each with many different stakeholders.

I like to think that I acted like a ‘critical friend’. Whilst listening attentively to the wide-ranging discussions (often technical) among leading academics and other professionals in the field, I looked for clarification on certain areas and asked questions on issues I’d found.

I brought a different perspective, from a patient, carer, family and public point of view. I told people about the cultural issues and ethnicity issues when it comes to getting involved in health research. I talked about why people from different ethnicities may or may not get involved in clinical trials, what barriers exist, and what can make it easier for people to get involved in research.

Public involvement played a key role in the workshops hosted by the HRA and MHRA. Public contributors worked alongside others to consider which questions will help embed thinking about inclusion and diversity in research. We hope that the guidance for researchers and sponsors will improve diversity. This will mean that anyone who could benefit from the research, can take part in the research, especially people from underserved groups.

There was excellent communication from Jane, the project lead at the HRA, both before and after each workshop, in terms of invitations and Zoom links for each meeting. Also, the agenda and all other documents that we had to read before the workshops, were sent with enough time. Jane also offered a ‘debriefing’ session shortly after each workshop. This is a positive step for those that need it.

There were lots of stakeholders on the Zoom call, which meant it was difficult to make a contribution at times, to get the voice of the patient, carer, family and public heard. The discussions initially were very high level (quite technical in language and scope) and rather abstract at times, with many academic and clinical terms being used often. As a result, I struggled at times to understand the main arguments, not coming from a clinical background myself.

The three public contributors brought their unique perspectives and experience of the challenges that different groups face when they take part in research. This informed the group discussion, as well as initial drafts of the guidance itself. Their input was important and has helped us make sure that the guidance supports those from underserved groups.

Being involved in creating this guidance, I have learnt:

• how important it is to talk and actively engage with as wide a range of stakeholders as possible
• to make the workshops and meetings as accessible as possible, making sure that everyone involved in the discussion speaks in plain English
• the need to really listen closely when difficult and new concepts are being discussed
• to accept and reflect upon on other stakeholders' views, opinions, and insights, but at the same time also be willing to share your own thoughts and experiences
• the importance of commitment from all, and effective teamwork, to make sure that the proposed plan is as best as it can be, based on what we already know and the ‘sharing of lived experiences’ by all

The workshops demonstrated the value of having a diverse range of opinions and voices in the room, and public involvement played a very important role in this. However, unsurprisingly having a range of people from different backgrounds can also bring challenges. M was particularly good at flagging to the project team when the language in the workshops was becoming very technical and impacting the ability to contribute. This was hugely helpful for us and something we are trying to improve in all aspects of our work.

From a personal point of view, I have found it hugely enjoyable working collaboratively with the public contributors and I look forward to continuing to work together as we progress!