Airing Pain 117: Patients as Research Partners

Involving patients in researching their own condition – it seems logical, so why is it not more common? 

This edition was facilitated by the British Pain Society and recorded at their Annual Scientific Meeting 2019.

In this edition of Airing Pain, Paul Evans investigates the potential for patients to play an integral role in research, alongside the professionals. Through discussions with patients John and Mark both of whom are part of research groups, he sheds light on the importance of patients shaping the research and treatment of their own condition. From patients being included in directing their own treatment plan to actually influencing the direction of original scientific research, there are many benefits to their involvement.

Louise Trewern, a member of the BPS Patient Liaison Committee, speaks of her journey from coming off opioids to working with Doctors in order to help others in similar situations. She highlights need to break down the ‘language’ barrier between professionals and patients.

Margaret Whitehead and Julie Ashworth explore how the BPS and the University of Keele, respectively, are encouraging patient involvement. Specifically, Julie talks about the University of Keele’s efforts to improve primary care with their programme PROMPPT.

Finally, Paul discusses the future work required to challenge the ‘doctor knows better’ attitude excluding patients from influencing the treatment of their condition for future generations.

Issues covered in this programme include: Opioids, educating healthcare professionals, fibromyalgia, research, patient voice, patient involvement, peer support, placebo, social media, epidemiology, Twitter and volunteering.

Contributors:

• John Norton, patient
• Mark Farmer, patient
• Louise Trewern, member of the BPS Patient Liaison Committee
• Margaret Whitehead, past co-chair of the BPS Patient Liaison Committee
• Julie Ashworth, Senior Lecturer University of Keele and Honorary Consultant at the Community Pain Service with Midlands Partnership Foundation Trust.

More information:

• INVOLVE, National Institute for Health Research, https://www.invo.org.uk/
• National Voices, https://www.nationalvoices.org.uk/
• Citizen Science Association, https://www.citizenscience.org/
• BPS Patient Liaison Committee https://www.britishpainsociety.org/about/bps-committees/
• Proactive clinical Review of patients taking Opioid Medicines long-term for persistent Pain led by clinical Pharmacists in primary care Teams (PROMPPT) https://www.promppt.co.uk/.