People with arthritis given equal say in research funding decisions

Article from Arthritis Today Spring 2016 - No 169

A pioneering pilot approach to patient involvement means Arthritis Research UK is blazing a trail among UK medical research charities to make sure people with arthritis are at the very heart of decision-making on research funding.

Chris Macdonald, our research involvement manager, explains: "Each year we fund around £25m worth of research into the cause, treatment and cure of arthritis so people can live pain-free lives. What better way to make sure this research is of high quality and relevant to the lives of people with arthritis than to make sure their voice is heard loud and clear when we make funding decisions?"

In 2015 we called for the research community to submit bids focusing on how to alleviate pain and fatigue – two of the biggest issues affecting quality of life for people with arthritis."This is the first time a UK medical research charity has given equal weight to the views of people with arthritis and scientists when making funding decisions."Chris Macdonald, research involvement manager

A single quality of life panel was established, made up of scientists and people with arthritis, to review and make joint decisions on these bids. Chris says: "This is the first time a UK medical research charity has given equal weight to the views of people with arthritis and scientists when making funding decisions. We believe people with arthritis and scientists working and making recommendations together in the same room is the way forward.

"We’re always looking for people with experience of arthritis, in any of its forms, who'd like to help us decide which research to fund. To find out more and get involved, contact us at researchliaison@arthritisresearchuk.org."

A fresh perspective

People with arthritis have been involved in decisions around research funding since 2008 when our USER stakeholder committee was first set up. Chair of the committee Jane Taylor has lived with rheumatoid arthritis for almost 30 years, having been diagnosed at just 26.

Having seen the positive impact of our research in her own life, most recently through successful anti-TNF therapy, Jane relishes the opportunity to use her experience of living with arthritis to help us make sure we fund the most vital and relevant research. She says: "This new approach is a vital and positive step forward. People like me bring a fresh perspective as we know the day-to-day reality of living with arthritis.

"We’re all passionate about getting the patient’s view reflected in research so more resources go into tackling the worst parts of living with arthritis."Listening to and learning from each other’s expertise will mean resources are devoted to research that has the greatest positive impact on quality of life for people with arthritis."Jane Taylor, chair of our quality of life panel

"It was particularly important to have a voice in the quality of life panel discussions working alongside scientists. The pain and fatigue I’ve experienced as a result of rheumatoid arthritis has had an impact on every part of my life – my family and my career, as well as my health. We can’t expect researchers to fully understand what living with arthritis is like without that personal experience, so everyone benefits from giving us the opportunity to explain what the most important issues are and why.

"Listening to and learning from each other’s expertise will mean resources are devoted to research that has the greatest positive impact on quality of life for people with arthritis."

Better research outcomes

Professor Anthony Jones, professor of neuro-rheumatology at the University of Manchester, sat on the quality of life panel. He says: "The value of scientists and people with arthritis working together was immediately clear. The people with arthritis on the panel had a great understanding of the science and brought a clarity of thought about the practical application of research in the real world.

"We academics can sometimes get hung-up on small details and working with people with arthritis had a balancing effect on our discussion, helping us to focus on the bigger picture.

"I believe this process will transform the way Arthritis Research UK makes funding decisions and will lead to even better research outcomes."

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