By Alex Taylor, Research Partners Group member
“I would recommend highly [the RPG] to other researchers”
– Researcher quote 15/08/2019
Just over a year ago my colleague and fellow lay member John Norton wrote a blog post introducing the newly-created Research Partners Group (RPG): An insider’s view of patient and public involvement. We’re a diverse group of 11 patients, carers and members of the public brought together by the Imperial Patient Safety Translational Research Centre (PSTRC). We were set up to help review research projects and researchers’ plans for involving people like us in their work.
Well, here we are just over one year later, and we have been very busy!
So, in this blog post I’ll be looking at what we have achieved, what we have learned, and what happens next.
The RPG has met 16 times since we began in September 2017 and has reviewed 25 research projects, spanning four key themes: 1. Safer systems across the continuum of care. 2. Partnering with patients for safer care. 3. Avoiding deterioration and delays in the care of patients with complex needs. 4. Enhancing the safety of medication and technology.
Here are some of the major things we’ve achieved in this time:
- The RPG has positively impacted research projects: researchers have changed the design of projects based on RPG feedback. For example, a project was going to use a text message intervention to reduce burn out of staff. The RPG suggested using positive feedback from real patients, which is now being taken forward. In many cases, researchers have changed their patient and public involvement (PPI) plans to involve patients more thoroughly in their projects.
- The RPG is changing culture at the PSTRC: all researchers we’ve worked with so far have reported that they would recommend engaging with the RPG to others.
“I was surprised by how knowledgeable, insightful and prepared the representatives were.” [Researcher feedback 25/09/2018]
- Researchers have learned about PPI and the value of it: researchers have stated that the RPG has acted as a learning mechanism and has helped them to understand more about PPI and what can be gained by involving patients, carers and members of the public. In a researcher review, 100% of respondents agreed their knowledge of PPI improved as a result of attending an RPG meeting.
“I feel far more confident in involving patients in my project.” [Researcher feedback 25/09/2018]
- RPG members have also benefited: we have undertaken four development sessions, for example building knowledge of study design. So we’re learning more about research and PPI good practice, as well as working in a diverse team. We have developed our networks and the RPG has led to other opportunities – for example, two members spoke at the Annual PSTRC Symposium and have taught on the Patient Safety Master’s course.
So it’s been a very busy, but very enjoyable and worthwhile first year for the RPG. We now have a very solid base that we can continue to build on.
“It was great to have the interaction with a patient group with different backgrounds and the chance to openly discuss ideas and seek clarification.”
[Researcher feedback 20/02/2018]
Lessons and learnings
While it’s been a successful first year, as with anything new there have been lessons along the way. By reflecting on these, then hopefully we can continue to evolve the RPG in a positive direction, as the needs of the centre changes over time. These are some of the main things we’ve learned:
- Researcher knowledge and experience of PPI is not consistent across the centre, so each RPG meeting is different and the PPI Manager now meets up with researchers prior to meetings to set expectations and inputs to the form that the researchers develop.
- Although the aim of the RPG was not to train researchers in PPI, feedback has suggested it has acted as a good platform for learning. Researchers still need to be supported in other ways and signposted to existing training.
- The PSTRC’s work is grouped into 6 themes, but some of these haven’t yet been represented at RPG meetings. We could therefore have a more systematic approach in terms of which projects attend which meetings, or a showcase event to encourage others to come!
- The 11 RPG members should not be the long-term lay partners for all research projects. The PSTRC’s work is broad and the RPG members do not have all the relevant experience needed to be involved (e.g. of specific conditions). We therefore need to consider how we ensure the researchers are engaging with and involving more people, so that we’re hearing from a diverse group of voices.
- Currently, feedback consists of minutes from meetings, a response from the researchers and a feedback form. But there needs to be a stronger system in place, to ensure RPG members hear how their comments were taken on board (or if they weren’t, why not?), as a learning mechanism. Researchers should therefore capture the impact of PPI in specific projects and feed that back to the RPG members, as well as the outcome of their projects.
As a group, we have adopted a ‘launch and learn’ approach – this means not over-engineering solutions or structures, but implementing quickly and learning by doing. With this approach constant reflection is required so that we can adapt and improve from experience.
Primarily, we need to understand what has worked well and why, and build on the initial success of the RPG. After all, we are only a year old and there has been a clear positive culture change of PPI at the PSTRC.
But we also need to think about the bigger picture. How can we most effectively ensure our vision of “appropriately and meaningfully involving patients, carers and the public in our research whilst being mindful of diversity”? A key part of this, as highlighted by one researcher, could be widening the RPG.
“Might the group benefit from less experienced members?’
[Researcher quote 25/09/18]
We’re currently thinking about how to bring on board fresh RPG members and ensure they feel supported and integrated into the group. Some of us will mentor the new members and we’ll be involved with the recruitment process, to make sure it’s inclusive and not off-putting!
Feedback is really important to us. So good or bad, we welcome all thoughts, views and opinions to help us be more effective at what we do. Please get in touch with Anna at email@example.com if you have any comments.