Emma Sutton: The problem of too many hats—involving clinician-patients in PPI

Patients who are also researchers and clinicians have an important part to play in quality improvement, says Emma Sutton

I am a patient, a physiotherapist, and a healthcare researcher and I am compelled to explore the benefits and challenges that wearing these many hats brings.

I have experienced several open and laparoscopic, emergency and elective surgical procedures. I emerged from what I found to be a traumatic experience, wanting to draw upon it to benefit my own work and the work of others. Several accounts of doctor-patients, clinician-patients, and researcher-patients have been placed in the spotlight because when combined, their medical, methodological, and personal knowledge offers a unique discourse. Trisha Greenhalgh used narrative data collected during her journey as a chemotherapy patient to write an auto-ethnography which was designed to: “explore how a medical analysis of the epidemiology and molecular biology of a particular cancer can inform and enhance a sociological analysis of how it affects the individual.” In another example, Liz O’Riordan gave a powerful plenary speech at the launch of THIS institute (The Healthcare Improvement Studies Institute) about her experience as a breast surgeon, with breast cancer to motivate others to improve care.

My experiences as a patient have yielded valuable insights which were not apparent to me before. Going through this experience myself has enabled me to learn so much more than I ever could from a text book, or as a clinician on “the-other-side” of the consulting room desk. I can relay similar messages about the strangeness of having medical things done to me; the fear of receiving bad news (waiting to find out that the melon sized adenoma which was removed was benign); the fear of living with a medical “appendage” (a stoma bag); straining to see through what felt like an impenetrable fog of information about a complicated chronic disease (endometriosis) and not knowing how it was going to affect me long term. I now experience relief, and elation that light eventually did penetrate through what seemed like an impenetrable fog, and I now (with the help of IVF) have a beautiful daughter, Bess, and a new baby boy born this year, Christian. Yet, I can still feel a mixture of fear, and annoyance, for example, when at an appointment the doctor didn’t know what my surgical history was. 

Whatever one’s profession, these are common human emotions and reactions. I always wanted to dedicate my career to the continual improvement of care for surgical patients, but my emotional reaction to the uncertainties and challenges I faced as a patient myself consolidated this for me, and motivated me to complete my PhD in the field of quality improvement.  Thus, as a clinician, a patient, and a researcher, I consider whether it would be possible for me to contribute to public and patient involvement (PPI) work in a piece of research.

Using my own experiences to influence research through PPI could be helpful, but could it also cause problems? Firstly, I may not be able to contribute my views while simultaneously enabling others to speak because my professional authority could predominate. Perhaps others would worry about this too and I may not have permission to join a PPI team at all. Researchers work hard to ensure that patients are not disempowered because they have learning difficulties, cannot speak English, or cannot understand medical jargon and the language of PPI we encounter, for example, in researcher briefing notes, reflects this. As an early career researcher I would like to think that I always provide personalised support and understandable briefing notes for each patient who is involved in research. I would also like to think that I can appreciate what it means to people to feel able to speak freely. Yet, when discussing a subject which is clearly emotive for me as a patient, I might not be able to avoid asserting the power that my professional knowledge as a clinician and researcher brings.

Secondly, what if exposing my own experience as a patient could affect my academic career? The NIHR national standards for public involvement, published in 2018 clearly outlines several roles which may be adopted by PPI panel members including public contributors and very experienced public involvement practitioners. The inclusion or exclusion of researchers and clinicians as patients is not mentioned. This leads me to ask “is it necessary to work harder to attract healthcare staff to obtain a wide breadth of perspectives?” I understand medical jargon, and I feel comfortable in the hospital environment (when I am working in it), but when I am admitted as an emergency for an open laparotomy in the middle of the night I am afraid and I cannot rely on my prior knowledge for confidence and reassurance. As Greenhalgh and O’Riordan describe, fear can be overwhelming and in that moment.  When we are patients, we are completely reliant on our colleagues to take good care of us.

Clinicians-who-are-patients could helpfully contribute as members of PPI panels because their knowledge of how the health system works may offer unique insights into how to make it better. Like all patients, clinicians and clinical-academics have a unique experience and bring a unique perspective. For example, my academic knowledge of quality improvement methodology — as applied in healthcare — enables me to ask which system failures create missed or delayed diagnosis? How can this be addressed? Yet, it is my experience as a patient which can direct me towards which questions to ask — for example, having frequent emergency department visits with pain, but missed opportunities for diagnostic tests or gynaecological referral, delaying the diagnosis of Grade IV endometriosis for several years.

To work out whether the experiences of someone like me would be a helpful addition to your PPI group or panel, it is necessary to understand what skills and experiences are needed at your PPI table. Do you need someone who knows what it feels like to come to the strange environment of a hospital where nothing is familiar? In this scenario, a clinician-patient is not appropriate. Or, do you need someone who knows the system from both sides and can suggest specific solutions? PPI is not a solitary occupation. To be successful, PPI should involve a range of perspectives, where individuals not only feel part of a wider, cohesive team, but can have a voice and operate well within it.

As a clinical-academic I also need to work out whether exposing my own experiences would have a positive, negative, or negligible impact on my career. As Greenhalgh suggests in her auto-ethnography, using my own experiences could serve a healing purpose and reporting my transition from clinical-academic to patient candidly could help me come to terms with how endometriosis affects me. However, to move beyond this and influence a research process (and perhaps a body of literature as patient co-researchers can co-author publications) appropriately requires skill. 

If we are to advocate the involvement of clinician-patients and researcher-patients, the concerns I have raised should be addressed. Much progress has been made for patient members of PPI panels with guidance detailing their roles and responsibilities and the support they should receive. However, considering what support clinician-patients and researcher-patients need to contribute to patient discussions appropriately could be explored in more depth. Is this because the distinct features of a clinician-patient / academic-patient role have not been fully described? Is it because the volume of clinicians and academics wishing to pursue a patient role is low, since many may be afraid to be identified as a patient? If clinician-patient and researcher-patient roles do grow, then any supporting guidance for these roles will need careful thought so that patients who are not clinicians or academics do not feel threatened, silenced, or isolated in any way.

We do not yet know the answer to the question ‘is it a conflict of interest to be a researcher or a clinician, and also a patient with the researched condition?’ However, I hope that this article can stimulate others to think about their own experiences and to ask who should be involved in improving care for everyone.

Emma Sutton is a clinical lecturer, University of Warwick, and a physiotherapist in the Walsgrave hospital (UHCW) gym, rehabilitating patients with hip and knee pain. She also works as an Extended Scope Practitioner (ESP) in orthopaedic outpatients at Rugby Hospital of St Cross. Emma Sutton works as a patient reviewer for the BMJ

Twitter: @emmasuttPhysio 

Competing interests: None declared