Three years of the insight panel

As they reach their three-year anniversary, the NIHR Newcastle MIC insight panel for patients, public and carers reflect on how they have made a difference to our work.

We held our first meeting with our insight panel for patients, public and carers on 29 April 2020. We hold meetings with the panel every three-four months so our methodologists can get that vital public perspective at different stages of our projects. So far, the insight panel has helped to shape 17 projects and grant proposals in these meetings. The panel also help to improve our communications so they are as accessible as possible to the widest audience. This includes reviewing our website, newsletter and impact story content. Members of the panel have also co-delivered presentations and co-developed our newsletter. They have also helped to write our insight panel handbook, recruit new members to the panel and steer the strategy of our clinical themes. The graphic below illustrates the different ways the insight panel influence all stages of a project.

As the panel reach their three-year anniversary, they have reflected on the projects and activities they have enjoyed making a difference to:

“I enjoyed the opportunity to comment on the GlycoScore/prostate cancer test. I believe that my suggestions were welcomed and might even make a difference if the research project develops to achieve its potential. Something else which I really enjoyed was participating in the Multiverse Lab and seeing (and helping!) real people to engage with it ‘on the road’. A rewarding experience to see the rebirth of the project that had been, (like many other face-to-face exercises), stalled by Covid.”

“The projects and activities that we consider are very varied and thought-provoking. We have opportunities to add an external perspective and to contribute to the development of research ideas. It really feels that we are making a difference, supporting the health and well-being of the whole community.”

“I like the focus on making life better for those receiving medical treatment whether it is a medical emergency or a long term medical condition where the daily quality of life is so important. Commenting on diagnostics in care homes was particularly interesting to me as I have involvement with a particular care home and was able to provide really relevant views. In places where care staff are stretched, and individuals are invariably medically vulnerable, having a toolkit of diagnostics is an invaluable resource. The test for immediate use in the case of a stroke in order to determine the best hospital to transport patients to is exciting. The diagnostics for pneumonia and fungal infections for ICU patients I feel are really making good use of the non-invasive potential of these tests. These patients may not be very communicative so the clinician is even more reliant on tests, and quick ones at that, to determine the precise nature of the infection.”

“It has been a real ‘eye opener’ to see the range of innovative and thought provoking projects that we have been involved with. There are many potential ‘good news’ stories here which should have a wider audience. I feel really well supported by the timely receipt of detailed papers and lay summaries to make informed decisions. The rapid receipt of updates following meetings has enhanced the experience. The evolution of the working of the Committee has been enhanced by the, “You said, We did” agenda item, identifying the impact of the Panel on specific issues. Projects which I have been particularly interested were the Scoping and Prioritising the Use of Diagnostics in Care Homes and the Rapid Test for Diagnosing Severe Strokes. I look forward to seeing how these develop. It has been rewarding to be involved with a group in which you can feel, as well as see, the evidence that we have made a difference.”

The panel also considered some of the challenges they have faced and improvements they would like to see as we look to the future:

“The biggest challenge was, I think, during the first year of the panel’s life when Covid appeared and meant that all of our meetings – including the very first – were destined to be online only. As time passed, we adapted and thrived, and this is now much less of an obstacle to group communication. It might be prudent to expand the group membership in 2023/24 to broaden even further the reservoir of collective knowledge and experience. Also, it would be good if the group could, at some stage, get out into the community and gather feedback in person at local venues.”

“I have been impressed with how the Panel has functioned and developed. An extensive range of experience, knowledge and skills sets are provided by members. Discussions on the various projects have shown a very analytical approach with appropriate constructive suggestions provided for detailed improvements. It could be beneficial to increase the number of Panel members in the future to further improve the skill set.”

“The business about the test being accurate and reliable in order to distinguish between different conditions is something I’ve learnt about now. It isn’t a challenge – more of an enjoyment. I really do appreciate hearing what other people have to say in response to an idea and a presentation. Other people’s comments help me to order my own thoughts and understand better what a project is aiming to achieve. The challenge for me is about looking at what is proposed in context of its use and thinking about what a patient or carer might feel. I try to make sure I’m thinking of the whole person and their whole life. So the challenge is thinking outside of myself and across groups and communities. It is more than just ‘thinking outside the box!’ For me the improvement I would like to see this summer is to join a session in person. Joining by Zoom/Teams is quick and it makes being a part of the group very easy. I would just like to see people face-to-face for a change. This is a personal goal for me! The other thing I would like to get a better handle on is how we measure and evaluate our contribution.”

We would like to take the opportunity to thank the panel for all their valuable support over the last three years. We look forward to hopefully working with the panel for more years to come!