Patient involvement in healthcare publishing How and why Rosamund Snow BMJ Patient Editor @BMJPatientEd

What happens if you don’t involve patients Jumping to the wrong conclusions Looking at the wrong level Looking at the wrong thing This is true for research, service delivery, education @BMJPatientEd

Looking at the wrong thing Patient outcomes in rheumatology Looking at the wrong thing Tender Joints Swollen Joints Pain Physician Global Assessment Patient Global Assessment Physical Disability Acute Phase Reactants Fatigue We’ve been studying the wrong things for over 50 years NB fatigue has been left out of MS studies too in the past OMERACT: Outcome Measures in Rheumatology (omeract.org) Kirwan, J. (2011). Patients Add Power to Research Initiatives. The Rheumatologist. Boers M, Tugwell P, Felson DT, et al. World health organization and international league of associations for rheumatology core endpoints for symptom modifying antirheumatic drugs in rheumatoid arthritis clinical trials. J Rheumatol 1994;21 (suppl 41):86-9. @BMJPatientEd

Looking at the wrong level Comparing outcomes of prostate cancer care (from International Consortium for Health Outcomes Measurement 2016: ichom.org) Looking at the wrong level Clinician focus on mortality …may obscure large differences in outcomes that matter most to patients % Martini Klinik is in Hamburg and has a very good reputation. But unless you look beyond basic survival, you don’t understand why it is the best at patient care. Patients agree that survival is an important outcome, of course. But there is so much more to it than that. 5 year survival 1 yr incontinence 1 yr severe erectile dysfunction Germany Sweden Best-in-class: Martini Klinik Swedish data rough estimates from graphs; Source: National quality report for the year of diagnosis 2012 from the National Prostate Cancer Register (NPCR) Sweden, Martini Klinik, BARMER GEK Report Krankenhaus 2012, Patient-reported outcomes (EORTC-PSM), 1 year after treatment, 2010

Interpreting the diabetes control and complications trial (DCCT) Jumping to the wrong conclusions Experimental group: intensive treatment Fewer clinician-defined “complications” Three times as much severe hypoglycaemia Coma Reduced awareness Death “Although we are mindful of the potential for severe injury, we believe that the risk of severe hypoglycaemia… is greatly outweighed by the reduction in microvascular and neurologic complications” Three times as much severe hypoglycaemia (62 per 100 patient years) Greenhalgh, T., Snow, R., Ryan, S., Rees, S., & Salisbury, H. (2015). Six ‘biases’ against patients and carers in evidence-based medicine. BMC medicine, 13, 1. DCCT (1993). Diabetes Control and Complications Trial Research Group: The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin dependent diabetes mellitus. New England Journal of Medicine, 329, 977-985.

Co-production of articles What the BMJ is doing Patient review Co-production of articles Patient authors Patient review Co-production WYPITs @BMJPatientEd

Unsub-mitted Research Researchers Were patients involved in… Setting research question and outcome measures? Designing, recruiting to or implementing the study? Advising on interpretation/write up? Will you inform participants of the results? Did the study… Patient reviewers Choose relevant/important aims and outcomes? Miss anything important? Make conclusions that would work in real life? Unsub-mitted What we ask researchers to put What we ask reviewers to look at •all must have ppi box or get unsubmitted @BMJPatientEd

Non-research content Be aware that it’s much harder for someone to have impact if they are the only patient involved or if the piece is already drafted before they are asked for input Patient advice sought, ideally at planning stage I consulted with a patient taking warfarin who has experienced interruptions of anticoagulation for procedures. She endorsed the importance of explicit discussions of the risks of thromboembolism and bleeding in these situations. She identified the importance of communication between medical and procedural providers so that these risks can be managed. I have incorporated these concerns into this article by including sections on risk assessment and mentioning the importance of communication between providers. She also reviewed the manuscript before submission. Acknow- ledges patient’s relevant expertise Patient endorses/ challenges article emphasis Patient suggests changes to scope of article Author explains changes made Examples of PPI box (from a SOTA) Consider co-producing the article with patient advisors as part of the author team Patient approves the way her input’s used Consider co-producing the article with patient advisors as part of the author team If patient advisors do not co-author, they can still be acknowledged as contributors

Patient-authored content Patients author this series, which is directly educational and has CME. Simply google “what your patient is thinking” to see the full series, or follow the Patient Editor on twitter @BMJPatientEd @BMJPatientEd

How might you contribute? Interested in being a patient reviewer for BMJ? Find out more at http://www.bmj.com/about-bmj/resources-reviewers/guidance-patient-reviewers Prompt for co-production Review Do they know what ppi is going on in their field? Are you sure? Any other Qs @BMJPatientEd