A post about the difficulties of applied interdisciplinary social science and healthcare collaboration in clinical settings
Healthcare organisations and healthcare professionals are under a constant imperative to innovate. Social scientists, in the era of impact, are being asked to play their part in this quest. Yet, whilst we are now routinely being asked to get involved in collaborative applied healthcare work, less attention is given to what makes such collaboration succeed. Through the example of creating a patient information comic that explains what it’s like to have an MRI scan, our research identifies the importance of shared values across a collaboration, that can enable working relationships to be developed and sustained, rather than the tantalising (but frequently empty) prospect of awards for innovation or REF Impact. It also captures the important regulatory/administrative barriers that can get in the way of such collaborations succeeding in clinical settings.
Our project started with Claire the radiographer’s idea to make arts based activity sheets for young Magnetic Resonance Imagining (MRI) patients. She saw a need to help children get used to the MRI suite’s noises and warning signs and magnets, by focusing on the emotional and practical experience of having an MRI rather than information about ‘the science’. Much later, an epic email chain, multiple meetings, and seedcorn university departmental funding led to a comics-form booklet with photo-drawing artwork by comics creator Heather Wilson: the My MRI! Comic (https://appliedcomicsetc.com/portfolio/my-mri/). The next step was to find out what children receiving a MRI thought and we secured funding from the Trust’s charitable foundation to undertake a small, qualitative evaluation of the comic’s use in MRI clinical settings, which is now underway.
The collaboration that made My MRI! happen was between Heather (as artist) and the Great North Children’s Hospital MRI team (as clinical specialists), supported by our scoping, planning, bid writing, project management and editing. It grew to become a collaboration across various clinical settings including, radiography, sociology, education, creative practice research, comics practice and hospital research management. To make sense of how this collaboration continues to unfurl, we will zoom in to the everyday intricacies of working together and zoom out to multiple disciplinary and organisational contexts. Young people, clinical staff, research management and administrative staff have all contributed in different ways to making this intersection of creative practice, clinical need and medical sociology expertise work. Our key message is that institutional processes may not be keeping up with what collaborative and interdisciplinary working practices require. This has far reaching implications and consequences for the future viability of collaborative working across patient and professional groups and applied clinical and humanities and social science boundaries.
Involving young people in the creation of outputs for them is, rightly, becoming an expectation not an optional extra. In May 2016 we visited the Young Person’s Advisory Group North England (YPAGNE) (https://sites.google.com/nihr.ac.uk/ypagne) to ask their opinions on a range of existing patient information materials. They gave clear and helpful advice on what they did and did not like. When we returned in February 2019, current YPAGNE members welcomed an update on the project and appreciated how we had incorporated their advice. They liked how our comic used photos of the real MRI suite not a cute imagined version, and were positive about how hand drawn characters gave a range of fictionalised yet plausible experiences. And our comic’s light-touch quizzes were well-received: not talking down to teens who grow up fast, particularly when managing complex health needs, but offering reassurance that a potentially unsettling hospital setting had indeed been understood.
Consulting young people at the start and completed prototype stages meant two review sessions over 34 months, plus a midpoint poster presentation at YPAGNE’s youth-led conference. This was essential in shaping our project, but is a light touch mode of integrating young people’s perspectives into collaborative practice. YPAGs are becoming a more visible presence within healthcare settings. They provide a useful point of interaction with young people’s perspectives, but should not become a short cut to ticking the public engagement box in a funding application. Our project’s limited resource meant YPAGNE was invaluable. However, as we seek to expand the work with the Trust on other comics-form patient information we are seeking richer engagement with young people as users of these materials.
Clinical staff have been willing to get involved and quick to articulate the need for and potential benefits of improving child-friendly patient information. This has not been about social scientists educating clinical staff on the broader meanings involved in healthcare practices: they already get it. Instead, what we needed to do was understand their complex work and institutional requirements as an MRI team in a busy regional service. While clinical staff have a genuine interest in being involved in innovative work they are incredibly time limited. We became very aware that we were pushing for input from people who on a day to day basis must prioritise their clinical workload. Though frustrated at times, the responsibility was on us to enable their input. Canny diary management helped find spaces around scheduled clinics and unscheduled emergency MRI scans, particularly to bring the radiographers and Heather together in the MRI clinic. That visit generated invaluable insights into what a child would encounter when first arriving at the MRI department.
Meeting clinicians (clinical leads) provided a strategic level of influence, still with a commitment to patient experiences. Getting the clinical director for the Trust on board helped in intended and unanticipated ways. He introduced us to the paediatric respiratory consultant, with whose team we are now working with to develop comics-form patient information about using ventilation equipment. Having the clinical director on board supported a successful bid to secure further short term funding from the university to develop this work with the ventilation team. His interest in the big picture of where our initiative could go is influencing current discussions of how to gain more substantial funding that will enable the collaboration to be deeper, longer lasting and more inclusive of young people’s perspectives. This also provided insight into strategic developments between university and Trust actors that helped us identify productive and less productive avenues to follow in working to expand this collaborative endeavour.
Medical sociologists are all too aware of the time and resource needed to navigate research governance pathways in health research. The NHS, particularly via the work of the Health Research Authority, has also become more flexible and attuned to the need for and importance of qualitative research. One of us has years of experience navigating these systems; nevertheless, steering this project through the systems has been a challenge. We have found ourselves in tangled loops of being directed towards a specific process only to find that we couldn’t tick the right boxes of a research project, while not appearing close enough to a NHS service evaluation to match that process either.
Approaching projects as service evaluations, rather than research, is sometimes seen as a way to reduce some of the complexities of both research and development sponsorship, and ethics approval. Even though our work has been very much focused on producing something to be used, which we wished to have evaluated by patients themselves, seeing it as a service evaluation did not lead to a straightforward way of doing that work. We are still finding ways through the at times contradictory advice from multiple email trails of different advice from different administrative departments about what we still need to do. We have become adept at quickly recapping the steps we have followed and the agreements we need to each new person copied in to the many email exchanges. A key requirement was for one of us to get an honorary NHS contact. That contract resulted in an NHS ID card, but not one that – practically or metaphorically – opened every door we needed to pass through.
As the work has expanded to the ventilation team, and we have sought to bring young patients more into the development process, the research component of this work has become more important. One reason for that is very practical. Given the volume of work involved so far, being able to publish from it is important to us and to the university. As such, we are now navigating NHS sponsorship and ethics approval. As we roll up our sleeves to tackle that process, relationships are again crucial.
Collaborations like the one set out here between healthcare professionals and other practitioners seek to make a difference to patients’ care, without a broader agenda for profit or glory. This is one reason it would be good to see clearer funding and regulatory frameworks for facilitating them. This is important because our creative arts practice and medical sociology collaboration differs from wellbeing focused art-in-hospitals initiatives, art therapy, or indeed patients’ own creative responses to their medical conditions. The collaboration’s focus on making a product for practical use in everyday clinical practice necessitates navigating hospital administration and regulatory processes and colleagues’ clinical workload. Our reflections share some of the stop-start process of taking this interest forward in organisational contexts where innovation is prized, but where existing infrastructure both frustrate and enable breakthrough work. We hope our examples help colleagues anticipate their own hurdles and negotiations of the research governance, ethics, funding, and clinical access involved in doing such work.
The above was written before we had heard of COVID-19, so much has changed. Understandably both the process of going through the regulatory stages and also working with the clinicians has come to a halt. It seems unethical to even email them to say don’t worry we won’t bother you. However, it is not without implications for funding and for salaries attached to the work, which we are trying to resolve. Longer term, while research processes in healthcare inevitably are concentrated on possible cures and treatments now, there is and will be a need for social science research about this crisis and how it has ripped through a healthcare system already undermined by over a decade of austerity. There will also be the need for patient information, including for children, in varied graphic form, some of which we are beginning to see emerge. Ensuring that patient information materials’ content is accurate and communication is effective continues to be an important concern, particularly in a wider social context of how easily misleading information can be circulated and acted upon. Getting all of that right will continue to require boundary-crossing, interdisciplinary collaboration with healthcare practitioners and patients.
About the authors: Janice McLaughlin (@JaniceMcl1968) is a medical sociologist at Newcastle University who uses a range of qualitative research approaches, including creative methods, to explore the lives and perspectives of disabled children across the varied medical and social worlds they interact with. Lydia Wysocki (@lyd_w) is an educational researcher at Newcastle University, using sociocultural theory to explore how what people read influences how they understand the social world. She founded and leads Applied Comics Etc, working with subject specialists and comics artist-writers to make comics that communicate specific information