Reflections on the HSRUK Conference: Perspectives of a Public Contributor

By: Peter Flockhart (public contributor from HSRU Public Involvement Partnership group) & Dr Magda Rzewuska Díaz (Advanced Research Fellow, HSRU Patient and Public Involvement Lead)

The bustling and culturally rich city of Birmingham served as the perfect setting for this year's HSRUK conference, providing an ideal backdrop for the range of inclusivity-focused research topics covered. From exploring the transformative power of public involvement in research to delving into the world of digital health services, not to mention the crucial discussions on addressing disparities and understanding underrepresented groups, it was an exhilarating rollercoaster of knowledge and thought-provoking discussions. What made this year's conference truly unique for me (Magda), was the opportunity to travel there with Peter Flockhart, from the HSRU PIP group, among many things I’ve learned about him are his personal health journey and experiences in caring for others. It was Peter's first time at the conference. His participation, as one of a small number of other members of the public contributors, provided a welcome injection of new ideas and insight. Here is what he thought about the conference:

Magda: Peter, can you share your overall experience with attending the HSRUK conference?

Peter: When the opportunity to attend was sent out little did I know that it would be me, what did I expect, I suppose that I thought that I would be able to hide in the background with all these clever academic people. Not so I was made very welcome with lots of smiles when you went from one session to another. I believe that I will feel more at ease in this academic environment moving forward. Yes, it was full-on and very long days but then again you learn very quickly to become a human ‘sponge’. Some of the sessions I found to be very good and even included PPI [Patient and Public Involvement] and of course, there was always the opportunity to ask questions at the end.

It was great to dive into your world instead of just getting occasional glimpses through the HSRU staff’s presentations. Seeing the unique approaches of different organisations and research groups was exciting. It will give me a broader perspective when helping design studies and dissemination in the unit. It also reminded me of the importance of public contributors in improving accessibility, not just readability.

Magda: It sounds like you were open to learning and indeed learned a lot from going to the event. You were surrounded by people with formal academic credentials, so it's easy to see why you might have been a little nervous at first.

Were there any particular sessions or presentations that stood out to you?

Peter: On Wednesday afternoon and the golden ticket a PPI presentation from Kate Sykes’s team. Wow, I didn’t expect to react in the manner that I did. A PPI partner spoke via a recorded message about his inclusion in a trial, his input, and his feelings were not only heard but he fully took part and opened his heart to all. He spoke about how his cancer affected him and how he wanted to help others coming behind to make their journey easier than his. At this point, tears were running down my face. I felt his pain, I felt his journey, but even more, I felt his joy at being listened to and respected as a specialist without a university degree.

I felt that I needed to send a message to each and everyone within the room (60+) about how important part we play. I took to the floor and sang the praises of HSRU and the staff who have brought us on a journey for over 5 years, yes you have ‘created a monster’ [that is: you've inspired a passionate public contributor] but one that can cover the world to sell PPI with what we bring. The nodding was heard and a round of applause was a bonus. We are not just members of the public, we are not merely users, we are much more than that, and the delegates in the room need to understand that. Those of you with degrees or fellowships, who discuss and build trials. No without PPI you can’t engage and use our name.

Magda: Right, I hear how much it meant to you as a cancer survivor. It's inspiring how openly the PPI partner talked about his cancer experience, which led you to talk about the important role public contributors play. Your passion clearly resonated with the participants, which is heartening. It's wonderful to see you take such pride in the HSRU PIP group's work, and I hear that by referring to ‘creating a monster’ are recognising the significant impact and influence of the HSRU PIP group's work, which has grown and become highly influential in promoting PPI.

Were there any challenges or opportunities you faced as a public contributor attending the conference?

Peter: Rather disappointing was that it appears from my perspective that there is an England bias. I’d like to see some representation from NHS Scotland. Also, some presentations were what can only be described as cluttered and difficult to either read or keep up with, in that, the presenter is often onto the next slide before you have a chance to either read or take reasonable notes. It would be good to arrange a session next year on presentation skills, including tips on creating effective presentations, with Q&A and practical examples. I shared these observations with the organiser and was asked to fill out a feedback form.

Magda: I can see that you felt there was a shortfall in Scotland's representation, and you found some presentations challenging to keep up with. It's commendable that you're planning to share this feedback with the organiser. I was also hoping to see more contributions from other UK nations, recognising that I enjoyed learning about exciting research developments in England. I get your point - there's a distinct opportunity to enhance the process by integrating communication science principles and fostering collaboration with PPI partners. Do you have any other suggestions for changes you'd like to see?

Peter: I noticed that there was very little PPI involvement or acknowledgement of PPI involvement. In one session I stayed behind at the end to specifically ask “Did you do PPI?”- oh yes was the reply, but “I didn’t include it in the presentation”. Really what’s the point of asking for their input if you are not going to mention it?

Magda: Right, if you ask for their opinion but don't show it, it may make people wonder if you're really trying to include them.Let's take this feedback to the organising committee, consider how well we do it in the HSRU and work towards more equitable representation in the future.Based on your experience, what recommendations would you give to conference organisers on further enhancing the involvement of public contributors in similar events?

Peter: From my side, I would have liked to see more PPI input not only mentioned and acknowledged, but it would also be important to see how PPI groups operate, and how much they not only do but what they have learned along the way. Perhaps sponsoring or even giving public contributors a significantly reduced rate so that they are able to attend even for a day, for whatever reasons, may be enough.

I attended this conference with my PPI partner [Magda], next time it may be good to meet up with and be given the opportunity to talk to other PPIs, perhaps something like a PPI ‘buddy’ scheme.

Magda: I agree, we need more visibility and acknowledgement of PPI contributions. Sharing the workings and learnings of PPI groups, coupled with providing significantly discounted rates for PPIs to attend conferences, would encourage broader participation. The idea of a PPI 'buddy' scheme, promoting interaction among PPIs at conferences, sounds interesting.  It’s something the HSRU PIP group decided to do for its new members too. My final question for you is - given the opportunity, would you attend the conference again?

Peter: Of course, I would. The more you see something, the better you understand how things should be done. You can continue building on what you’ve learned. It's like improving your own standards by learning from the best examples. That said, I would still need a mentor, to give me their support.

Magda: I hear that my presence made things easier. I also enjoyed yours and learned a lot by seeing things from your point of view.  Thank you for sharing your thoughts.

Peter: No thank you and HSRU for giving me the opportunity to enter your world and see it from the other side, you made me feel at ease, with your support HSRU can only grow. Once again thanks for being part of this journey and I hope we get the chance to maybe do it again someday.

Please note, all comments will be moderated so may not appear immediately. If you wish to remain anonymous in your comment please put down initials or solely a first name.