Philip Scott describes why BMJ Health & Care Informatics is launching a programme of patient and carer involvement
When my mother was dying in hospital six years ago, at each visit I would be told something that contradicted what I’d heard the day before. One day we were waiting for this test result, the next day we didn’t need that test after all. Or yesterday it was, “Let’s stop all the pain medication and see what happens,” followed by, “Who on earth thought that was a good idea?” What’s stopping her from leaving hospital? Today it’s this, tomorrow that doesn’t matter and it’s something else. Each day I’d encounter a different junior doctor, leafing through the notes to find something to tell me. Finally, quite by chance, I had the amazing luck to actually meet the consultant who could piece it all together into a coherent story that more or less made sense.
Information has been called the “lifeblood of care.”1 Using that analogy, many patients and carers suffer from a critical deficiency. Communication failure is widely recognized as a recurring root cause of error in healthcare. This is not solely down to overworked medics, but usually involves unreliable processes2 and poorly designed or badly implemented information systems.3 As the Richmond Group of Charities put it, effective use of information for patient benefit is often “currently being achieved in spite of the system, rather than because of it”.4
This is not just a matter of ticking the box marked “patient involvement” or mouthing mantras about “patients at the centre of everything we do.” Patients and their family carers can be far more than mere passive recipients of information. It is perhaps no coincidence that one of the pioneers of medical computing, Warner Slack, was also a vocal proponent of patient participation. He coined the phrase that “patients are the most underused resource” in healthcare.5 I particularly like his software (written in 1966, before the word “co-design” was invented, but demonstrating its meaning) to take a medical history from a patient typing into a computer terminal. It famously included the “none of your damn business” option on some questions and on completion would translate “patient English” into medical terminology.6 I suspect that modern commercial systems would struggle to emulate such performance.
Patients and carers can understand as much as, if not more than, any clinician about information technology opportunities. They are not constrained by assumed organisational issues or rules, and cast a credible perspective on informatics possibilities and recognise things that are actually stupid ideas. Informatics professionals will benefit from listening to and learning from people. As a very practical example, it has repeatedly been shown that patients mostly understand what is in their medical record and can identify errors and omissions.7, 8, 9 Topics such as shared decision making and reducing treatment burden have clear informatics implications and are calling out for patient and carer voices.
BMJ Health & Care Informatics is launching a programme of patient and carer involvement, with seed funding from the British Computer Society Health & Care Executive. We want to bring the patient and carer voice into peer review and writing original material, perhaps later coming into editorial roles. In line with the guidelines of the UK National Institute for Health Research, we will offer to reimburse the time of patient and carer participants—we want to reach beyond the articulate middle class, to those who are at the sharp end of “social determinants of health.” We have worked within BMJ’s existing patient involvement structures and policies and set up a governance process to avoid conflicts of interest. Over time, we should insist that any papers we accept in our journal include appropriate involvement of patients and carers, even in apparently very technical subject areas—if there is no patient angle then what is the point?
We need to amplify the voices of patients and carers so that their insights are central to digital transformation. Let’s cure the “infonaemia.”
Philip Scott is a deputy editor at BMJ Health & Care Informatics.
Competing interests: None declared.
 Coiera E. Communication systems in healthcare. Clin Biochem Rev, 2006. 27(2): p. 89-98.
 Burnett S, et al. How reliable are clinical systems in the UK NHS? A study of seven NHS organisations. BMJ Qual Saf, 2012. 21(6): p. 466-72. DOI:10.1136/bmjqs-2011-000442.
 Walker K and Ben-Meir M. It’s time to think hard about how clinicians work in a digital age. BMJ Opinion, 2019. Available from: https://blogs.bmj.com/bmj/2019/01/30/its-time-to-think-hard-about-how-clinicians-work-in-a-digital-age/
 Richmond Group. My data, my care. 2017. Available from: https://richmondgroupofcharities.org.uk/sites/default/files/lr_5233_richmond_group_my_data_my_care_report.pdf
 Slack WV Patient Counseling by Computer. Proceedings of the Annual Symposium on Computer Application in Medical Care, 1978. 222-226. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2231757/
 Slack WV, et al. A computer-based medical-history system. N Engl J Med, 1966. 274(4): p. 194-8. DOI:10.1056/nejm196601272740406.
 Fisher B, et al. Patient record access–the time has come! Br J Gen Pract, 2007. 57(539): p. 507-11.
 Pyper C, et al. Patients’ experiences when accessing their on-line electronic patient records in primary care. Br J Gen Pract, 2004. 54(498): p. 38-43.
 Powell J, Fitton R, and Fitton C. Sharing electronic health records: the patient view. Inform Prim Care, 2006. 14(1): p. 55-7. DOI:10.14236/jhi.v14i1.614.