Pioneering Partnerships at the Patients First Conference
Written by Frances Borrer, patient insight partner
As a newly recruited patient insight partner for Arthritis Research UK I was delighted to be invited to the ‘Patients First: Pioneering Partnerships’ conference recently, and it was a real privilege to be asked by research involvement manager, Chris Macdonald, to speak at the seminar he was delivering as part of the conference. The subject of the seminar was the importance of patient involvement for industry and charities, and my role in it was to discuss a workshop I took part in with other patient insight partners and a leading pharmaceutical company."I have always felt the patient voice is crucial...no one knows what it is like in quite the same way as those who live with [rheumatoid arthritis] day in day out"
As Michael Seres, the inspirational opening speaker at the conference, said “every patient has their story” and I am no exception. I have always felt the patient voice is crucial, especially in any long-term condition such as rheumatoid arthritis (which I’ve had for nearly 40 years) as no one knows what it is like in quite the same way as those who live with it day in day out.
Throughout the conference we listened to a number of speakers, including humbling stories from patients who had made their voices heard and were determined that, if not for themselves, things are better for those who come after them. Part of why I became a patient insight partner is so that a 23-year-old diagnosed with rheumatoid arthritis today does not feel as frightened and helpless as I did all those years ago. So their views certainly struck a chord with me.
It was encouraging to hear how charities, research organisations and the pharmaceutical industry value the unique insights that patients have to offer and are harnessing them to improve and enrich what they do. Taking part in the conference certainly opened my eyes to how much work is being done to ensure that patients are involved at every step – and I came away feeling very positive about the future for patient involvement – it’s a win/win situation!