Celebrating three years of the HRA Shared Commitment to Public Involvement
This week (w/c 10 March) we’re marking the third anniversary of the launch of the HRA Shared Commitment to Public Involvement in health and social care research.
The NIHR ARC North East and North Cumbria was the first ARC to sign up to the Shared Commitment (in October 2022), and we continue to work in partnership with other leading organisations on this important initiative, to help drive up standards in health and social care research.
Cheryl and Irene are members of our ARC NENC Public Advisory Network and represent ARC NENC on the HRA Shared Commitment to Public Involvement National Steering Group.
In this joint blog, they share their personal stories and reflections around what led them to become involved in research as public advisors, and why they think the Shared Commitment is so valuable.
Irene
“We all bring different things to the meetings, but I think at the heart of it is to enjoy listening to each other, everyone has lived experience.”
After a cancer diagnosis in 2003, several months later I was asked to go along to a meeting. I didn’t really know what this was about but there were 6 patients and the other 6 were from a healthcare/counselling background. I would say that we eyed each other up nervously (we didn’t know each other) and it was very quiet to start off with, the others explaining their roles, and explaining that thought was now being given to the emotional support for patients, as well as the medical.
Within a few minutes, the non-patients said: “Right, we’re going to rip this up and listen to you!” This was an amazing experience for me, being listened to.
It was then that I found that I wasn’t as alone as I thought. I guess this was my first foray into the world of research and it made me very conscious that people everywhere need a voice.
I was also very conscious that I was here because of research, and I became very passionate about saying how important it was. It also didn’t have to be about the medical kind. Research takes many paths.
Fast forward several years, I found out about the ARC NENC, and I became a member of their Public Advisory Network and got involved in many projects. When I was asked if I would like to be part of the Shared Commitment, I was delighted to contribute.
When I started going along to the Shared Commitment meetings, there were 13 organisations, now there are 30! All involving public and patient contributors, and all doing things in different ways.
I particularly enjoy the Learning and Sharing sessions, you can learn such a lot. I am also coming across organisations that I’ve never heard of before and it’s always good to pass on details.
We all bring different things to the meetings, but I think at the heart of it is to enjoy listening to each other, everyone has lived experience. We have lots of connections between us. We come from all parts of the UK, even further afield now!
I believe the Shared Commitment is a very valuable and essential part of health and social care research.
Cheryl
“I really enjoy being part of a team that brings together a collective of individuals from different backgrounds.”
As someone with an inquisitive mind and an upbringing around the medical profession, as well stubbornness to find a solution since experiencing fibromyalgia from the age of 13, I’ve been interested and involved in research and community development for over 25 years.
With 21 years of motherhood x3, 30+ years with fibromyalgia and 5 years with Long Covid, I have collected a lot of experiences, learnings and gained many insights and a lot of personal growth.
With this growing knowledge I have worked on expanding it and volunteered/worked in local communities, education, facilitating research groups, and become known as the artsy, creative, historical, whimsy, ideas person who loves to get involved and help people tell their stories, focusing on humanity rather than the problems.
I have had a lot of ups and downs in my life and it was during a particularly difficult time going through family courts that I found the welcoming arms of ReCoCo – the Recovery College Collective, based in Newcastle, which is an independent peer-led mental health charity, and from there I was introduced to the concept of ‘Experts by Experience’.
I am passionate about inspiring and educating students through tales of my experiences with domestic abuse, coercive control, social workers, family court and family mental health, so I jumped at the chance to turn something negative into a positive and I’ve now been with Northumbria University for five years as an Expert by Experience.
Since then, I’ve been involved in many research projects and through this, I was introduced to the opportunities to be involved with the ARC NENC and the Shared Commitment group.
I was nervous at first as it felt like a big step up, but I needn’t have worried as everyone I’ve met makes you feel very welcome and valued.
I really enjoy being part of a team that brings together a collective of individuals from different backgrounds and to see how we look at research or information with fresh eyes and from our different perspectives and roles.
To be part of something that is looking forward in recognising the importance of a mixed approach to take on current and emerging health care challenges is truly ground-breaking.
Being able to recognise these new ways of involving the contribution of every member of the research team, including public and patient contributors and Experts by Experience, is something I am proud to say I’m a part of and continue to be.