Our history of involvement
We're proud to be one of the leading medical research charities when it comes to incorporating routine public and patient involvement into our research funding decision-making process.
USER stakeholder committee
Our formal research involvement activities began in 2008, with the establishment of the USER stakeholder committee by our former medical director, Alan Silman. The USER committee was made up of people with arthritis as well as non-research active clinicians and healthcare professionals.
Wendy Broderick, a patient insight partner who was also previously involved with the USER stakeholder committee, reflects: “This committee had a balance of clinical staff and patients and met several times a year to review project applications and programme grants. The work involved reviewing applications at home prior to meetings and then presenting any thoughts and considerations at the meeting in discussion as a group. Recommendations then passed to the science committee who made the final funding decisions.”
In 2016, in line with our new strategic focus to put people with arthritis at the heart of everything we do, and a desire to fully embed them in making the final funding decisions, we built on the success of the USER stakeholder committee to establish our patient insight partner group.
Wendy Broderick, patient insight partner said "Recommendations then passed to the science committee who made the final funding decisions”
Patient insight partner group
Our patient insight partners are a group of people from across the UK who have a wide range of experiences of living with a musculoskeletal condition. Following a restructure of our charitable subcommittees, the patient voice is now integrated fully into all our research activities through close collaboration with our patient insight partners. They are instrumental in bringing a patient perspective to the research decision-making process.
Maureen Grossman, one of our patient insight partners, explains: “Since the charity’s role has evolved and widened, I now do much more as a patient insight partner…I am asked to take part in a range of activities, such as visiting centres of excellence, commenting on products designed to make life easier for patients, lobbying my MP, working with European partners in OA [osteoarthritis] research and co-delivering workshops to help scientists involve patients in their activities. It keeps me busy and I get great job satisfaction!”
We’re constantly looking for new ways to expand our patient involvement activities. By listening to our patient insight partners and working collaborative with other organisations, we’re putting people with arthritis at the centre of research.
Maureen Grossman, patient insight partner said "I am asked to take part in a range of activities, such as visiting centres of excellence… lobbying my MP, working with European partners”
Integrating involvement throughout the research cycle
We involve people with arthritis throughout our research activities via our patient insight partners (PIPs). Our PIPs take part in a number of different activities all across the research cycle.
- Setting research priorities - We ask people with arthritis what their unmet needs are and set strategic calls based on what they tell us
- Training researchers in PPI - Our patient insight partners co-developed and co-deliver the training workshop that we deliver to researchers who wanted to learn about patient and public involvement
- Reviewing funding applications - This is the ‘bread and butter’ of patient insight partner work. Our PIPs critique funding applications (at home and on subcommittee panels) to ensure that the projects that we ultimately fund are the most relevant to people with arthritis.
- Facilitating participation - In research projects, people with arthritis can, in some cases, help conduct the study (for example, they can carry out interviews with participants and can interpret qualitative data).
- Monitoring and overseeing - Our research centres are large investments of money and PIPs are involved in monitoring the work of those centres at annual visits as well as critiquing their future plans on renewal panels.
- Evaluating and disseminating outcomes - Patient insight partners are increasingly becoming central to the way that we communicate our research outcomes, as well as our involvement work. This includes writing news articles and presenting at conferences
Adopting meaningful patient involvement approaches to our research activities increases the relevance of our work, enhances research excellence and helps to ensure that studies with patient participation are as safe, sensitive and ethical as possible