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

2. 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

3. 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

4. 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

5. 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,

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

7. 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

8. 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

9. 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

10. How might you contribute?
Interested in being a patient reviewer for BMJ?
Find out more at
Prompt for co-production
Review
Do they know what ppi is going on in their field? Are you sure?
Any other Qs
@BMJPatientEd