‘Inspiring Stories’ with Carmel McGrath and Lynn Laidlaw
PhD Student and Public Contributor
This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine.
Recognising and rewarding the value public involvement brings to research
Lynn Laidlaw and Carmel McGrath reflect on the conversation and experiences that led to the suggestion to set up the Public Contributor Reward and Recognition Scheme (click here for more information).
The advantages of involving public contributors in research are increasingly well recognised and it is now standard best practice to reward and recognise public contributors for their time and input via payment. In some cases public contributors may receive formal training in research methods, for example the European Patients’ Academy on Therapeutic Innovation (EUPATI) provides training for patients on the processes of medicines research and development. There are also Patient and Public Involvement (PPI) groups who have had specific training in modelling, have been funded to work towards a Masters in Research Methods as part of their involvement, or have been given certifications of involvement. While these are important steps forward, recognition and acknowledgment of lay expertise for those who are involved in doctoral research projects needs to go further.
Public contributor perspective
Discussing this issue with Carmel McGrath, a colleague and friend who is undertaking her PhD, prompted me to reflect on my “Involvement odyssey” in health research, which has been informed by my lived experience of multiple medical conditions and navigating healthcare systems. After contributing to many research projects, I now feel I offer more than my lived experience. I have become increasingly research literate with experience of joint priority setting of the research agenda, to reviewing grant applications, being a patient co-applicant on grants, and recently being awarded direct funding for a research project with another patient partner. Despite this, I have found that there has been little formal recognition of my input or experience. We are often expected to comment on plain English summaries or participant information sheets, but there is less recognition that we can, and do, input into topics such as methods and analysis. Public contributors very seldom get to describe their input and experiences in papers or grant applications, etc. as others do it for us. I can’t help but wonder if this is due, in part, to the ongoing debate about the qualities and skills that public contributors to research should have. It sometimes feels as if we are like Goldilocks’ porridge and have to be “just right” for any given piece of research. Some researchers are concerned that if patient and public contributors become too knowledgeable about research it detracts from their ability to share lived experience.
PhDs are unique in research in that they focus on the achievements of an individual and aren’t a collective endeavour. I have no wish to detract from that and am in awe of the hard work and dedication needed to complete one. However, I don’t think this should preclude recognising the input that patient and public contributors can have in doctoral research (or indeed any other research) which in my experience, and that of other experienced public contributors, often extends to providing a critical friend perspective throughout the project and advising on appropriate methods. I would argue that our role is just as important as that of academic supervisors and formal mentors whose input is always acknowledged.
An illustration of the pivotal role patient and public contributors may play is provided by Carmel
“Reflecting on my PhD journey, I recognise that input and support from public contributors has been integral to my achievements. During the Covid-19 pandemic I suspended my PhD and returned to work as an intensive care nurse. Regular communication from public contributors provided me with ongoing encouragement and unwavering commitment to support me and my research. Whilst these actions may not be tangible, they contributed to my passion and drive to continue my research at a time when I felt mentally and physically exhausted. While they have received payment, recognition in my thesis and their name on a paper, I think that these contributors should receive more formal recognition in the form of an honorary award or certification”.
While payment for contribution to research and acknowledgement on papers is important, we think patient and public contributors should also be offered some form of documentation, providing details of their input which could potentially be used as a credit towards academic study or qualification or as evidence of skills to help with a job application. Providing formal and recognisable honorary certifications, to those who want them, might also reduce the transactional nature of involvement, and help move towards a system that creates reciprocal benefits.
As mentioned at the beginning of the blog, the Faculty of Medicine at The University of Southampton, in partnership with the University Hospital Southampton NHS Trust, has launched a public contributors recognition scheme. Anyone can use the scheme to recognise the valuable contributions made by public contributors who work with researchers. To nominate a public contributor for the recognition scheme please click here.
To find out more about paying public contributors follow this link: Reward and recognition for public contributors – a guide to the payment of fees and expenses (nihr.ac.uk).
To find out more about the NIHR’s plans for public involvement you can read the Going the Extra Mile (2015) report: http://www.donorhealth-btru.nihr.ac.uk/wp-content/uploads/2018/10/NIHR-Going-the-Extra-Mile-2015.pdf
About the blog writers
Lynn Laidlaw – I live with a rare disease and multiple long-term conditions. I am involved as a Public Contributor in Health research across the UK with many different groups and academic institutions. Twitter: @lynn_laidlaw
Carmel McGrath – PhD student funded by the National Institute of Health Research Southampton Biomedical Research Centre and the University of Southampton. Her PhD explores the impacts of Patient and Public Involvement on health research. Email: firstname.lastname@example.org Twitter: @McGrathCarmel93
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