Integrating the patient voice By Debra DuLake, Patient Insight Partner, Versus Arthritis Published: 30 October 2019 Around 5 years ago, after receiving a diagnosis of fibromyalgia and right hip osteoarthritis from a birth defect, I decided to get involved in research. At the age of 42 I was disabled, unable to work, in constant pain, fatigued and feeling pretty sorry for myself. When researching arthritis, I kept finding information leaflets featuring only grey-haired people on them, making me feel old before my time. I needed a new purpose in life, and I found just that whilst attending a Nottingham University open day. Amongst the many stands I came across Arthritis Research UK, they told me about the opportunity to get involved in their research activities and I asked them where to sign up! Not long after I was contacted, interviewed, and inducted as a member of their Patient Insight Partner group. I never looked back. I found myself amongst like-minded patients, learning about exciting research developments in the field, and helping to guide all aspects of the charity’s research work: from reviewing applications from entrepreneurs seeking funding for aids they’d designed for people with arthritis to taking part in campaigns for Parliament. One of my proudest moments was seeing my photo used in a charity leaflet. Through my involvement I’d unintentionally helped to change the perception that arthritis is just a disease of the old. Since signing up to become a Patient Insight Partner I’ve had many other patient involvement opportunities come my way. Once I took that first step, countless doors opened: I’m now part of patient involvement groups at Nottingham University and Manchester University, I’m also involved in a huge fibromyalgia project in Aberdeen. The groups are friendly, accommodating and usually have a point of contact that runs everything, so I have a familiar face to communicate with all the time. I now consider the people in these groups my good friends. I think every organisation funding research should be integrating the patient voice into their research activities. If you’re looking to build a patient involvement group, you can start by contacting a charity with experience in this area. They can give you advice and even put you in touch with one of their own volunteers who can recommend how you can meet the needs of patients wanting to join, for example addressing accessibility issues or payment. It’s important to remember that patients are giving you their time, potentially whilst experiencing pain and fatigue, so make sure you budget for their travel and time whether it’s via vouchers or a set payment. It’s then down to the patient to take or refuse this depending on their financial situation. Travelling expenses should be reimbursed as quickly as possible or should be booked by you if possible so the patient doesn’t have to pay out in the first place. By working closely with patients, organisations can ensure that the research they fund is relevant, accessible and sensitive. I can see a shift now, where patients’ expertise is being sought after and this can only mean that we’re asking the right questions; helping researchers to see things through the eyes of patients so that they can deliver the changes that matter most to us.