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/.