Author: Kate Horton and Neil Perron.
It’s always sad to see a project end, particularly when it’s a project that’s brought joy and companionship as an integral part of the work. That is something that is felt, of course, by professionals* in the world of research, but it can be felt so much more by the public who have contributed to the project.
When we assemble our research applications and we write what our Patient and Public Involvement (PPI) objectives will be for the project, we rarely write about what the benefit will be to the people we intend to involve. But I believe this is a big part of why we continue to do good PPI work in research and why people continue to care and get involved.
Yes, many people will initially get involved because they have an experience, or that the project resonates with them. Maybe they are tempted by the people connected to the project because they know them (clinically, professionally and rarely, socially), but staying connected – that’s a different kettle of fish altogether!
One such of these Involvement endeavours has just ended. Sadly, not because a project has reached a planned and timely ending but because the funding and decision to continue the clinical service attached to the group, has ended. Such decisions whilst, devastatingly sad for the team and the patients, are out of my hands and to comment here would be inappropriate and unhelpful. Instead, I will focus on the value, importance and impact of the group and this service, through the eyes of the group members.
The East Midlands Cancer Alliance Centre for Psychosocial Health (aka EMCA-CPH), from its inception, has been populated by clinicians wanting to best serve their patient population and a key part of this was creating and continuing to hold space to have dialogue with their patients in a way to include their suggestions, criticisms and comments. Making a space for these to hold weight and deliver impact.
From the first time I was approached by the team, it was obvious they wanted to make something genuine, something powerful and something that could create good practice from the beginning. From our first pre-group conversations it was clear that Adam Hill and Felicity Gibbons and the rest of their team knew this was important to their service. They wanted to be guided in how to create this Patient Involvement space and it has felt like they were preparing a greenhouse ready to grow as much and as big as they could.
The team can report on many of the impactful things that happened with the group, and I’ll leave them to report on the impacts to the service in their own way. I’m going to focus on comments from the group members about their involvement and why it was genuine, important and enjoyable to them.
Neil said “I was delighted to be invited to the group and welcomed the opportunity to provide views and comments from a ‘cancer patient’ perspective. It was great that the East Midlands Cancer Alliance recognised that the patient insight was invaluable when developing policies, products and processes for the future.
Throughout the time that the group were in place, there were clear benefits to those within the health service who sought the patient insight. Examples being how to best engage patients face to face, remotely or digitally; how best to gather patient data and how to shape research projects that required patient involvement.
There were also benefits to being part of a group of patients with shared experiences. We were able to discuss how cancer had impacted on us and as support each other with a real empathy and kindness. The group generated a set of values that we all bought into.
From a personal perspective, I benefitted immensely from being involved. It gave me the opportunity to ‘give something back’ to a fantastic health service that had been incredibly supportive to me during my fight with cancer. It also provided a stimulus to my mental wellbeing. Being part of a team and being able to contribute to discussions that had a future impact on other future patients, gave me a real sense of worth.”
Another group member, Louise, has been interviewed multiple times about both her experiences and the service. In this article she talks about the positive impact this service has had on her. However, before you click on this link, the article talks about cancer, a terminal cancer diagnosis and the impact on a young family, so please don’t read this if you feel it may trigger strong personal responses and affect your own wellbeing. The article headline if you choose to skip it is “I have terminal cancer, but I’ve never felt so mentally well”, which is an incredible review of how well this service and the team has worked for its patients.
These comments are just some I have received from the group members, and I appreciate the time they have all taken to talk to me about their involvement.
Ripples in a pond – in this case incredibly positive ones – will continue long after this group ends. Every word spoken by group members, every comment small or large has landed compassionately and powerfully into this team of clinicians and researchers. It will take an exceedingly long time, if ever, for their words to be forgotten. These words and meetings will continue to create positive disruption for this group of clinicians. I am delighted to have had the opportunity to meet the group members and see this powerful Involvement work first hand.
In a healthcare world where everyone is talking about Artificial Intelligence offering shortcuts, and ever quickening deadlines feel the norm, I recommend we continue to involve people wherever possible to understand those who ‘walk the walk’. If I can ask anything of anyone, it is to use the examples set by EMCA-CPH and their Patient Involvement Collaboration, to build compassion, space to really listen and opportunities to springboard into good actions created for patients.
NB *when I talk of Professionals, I mean people who are salaried and contributing to research in terms of their clinical, academic or administrative roles and not those people who will have extensive professional and lived experiences but are not part of the employed system of research. It’s worth noting the people outside of this Professional description are often those most disadvantaged by change, often feeling outside the system and outside the circle of inclusion within research teams and this is why their experience, can often be overlooked in post project dissections.
Kate Horton, Public Involvement Lead, Institute of Mental Health
Neil Perron, member of the Patient Involvement Collaboration with the East Midlands Cancer Alliance Centre for Psychosocial Health