‘Inspiring Stories’ with Carmel McGrath
Postgraduate Researcher, Human Development and Health
This is part of the Engaged Medicine āInspiring Storiesā blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southamptonās Faculty of Medicine.
What do you do to work with patients and/or the public?
In 2018, I began my PhD with the University of Southampton. The topic area of my PhD is exploring the impacts of Public Involvement in health research. Therefore, as public involvement is the central focus of my subject area, it was essential that the research was undertaken with public contributors throughout the entire process.
Since starting my PhD, I have had the privilege of working with public contributors on various activities. These activities have involved public contributors reviewing and providing input to participant information materials and study recruitment strategies, as well as co-creating a coding framework that was used to qualitatively analyse 2,415 open text responses to PPI questions from the Researchfish platform. We (the public contributors and I) have also attended conference events to disseminate the research findings and share our experiences and reflections on working together.
One of the public contributors that I work with also sits on my research steering group. In these steering group meetings, the group members discuss the project oversight and help to make decisions about the research direction.
From the examples of PPI above it is possible to see that there is a clear distinction between the roles of a PPI contributor versus the role of a participant in a clinical trial. Patient and Public Involvement (PPI) is a term that is used to describe the active partnership of involving patients and/or the public in decisions around healthcare treatments, services, interventions, policy and research(1).
What has driven you to work with patients and/or the public as partners in research?
Prior to starting a PhD about public involvement, I worked as an intensive care nurse. Fundamentally, my role involved providing high quality care for patients on a day-to-day basis. High quality care involves advocating, supporting, and empowering patients to be at the heart of decisions about their own care and treatment. Working with patients to create shared plans, ensures the care delivered and received meets the patientsā individual needs and preferences.
The National Institute of Health Researchās (the research funding arm of the National Health Service) mission is to āimprove the health and wealth of the nation through researchā(2). The NIHR recognises the importance of placing the patient and public voice at the heart of research so that the research produced meets the needs of those who are most affected by it.
When I saw the advertisement for this PhD, I immediately recognised that the principles underpinning public involvement shared similarities to those I maintained when treating patients. I was intrigued to find out more and learn about the difference patients and the public could make to health research. I was also drawn to this research project as it meant that I would be able to work with patients and the public to undertake the research. I thoroughly enjoyed working as a nurse because I could interact with individuals daily and these people would inspire me with their strength and determination and humour! I was excited by the prospect of developing new relationships and working with patients and the public to undertake the research.
Why do you consider Public Involvement to be important?
There is no doubt that working with patients and members of the public who can share their lived experiences, knowledge, and expertise in a subject area will only improve the research, outcomes produced, and impact of the research. I also believe that public involvement is so important for ensuring that research carried out results in meaningful benefits for the people who are receiving treatments or interventions that have been designed based on the research. This is particularly important considering that the research is publicly funded!
As my research is about exploring the impact of public involvement, these benefits have been acknowledged in the wider literature, through my own research studies and from my own experiences of working with public contributors(3-5). In addition to the benefits brought to the research, I have seen first-hand how public involvement can provide benefits that are not limited to the research(6). When I first started my PhD in 2018, I had limited research experience and no experience in public involvement. From the very start right to the near finishing of my research, the public contributors I have met along the way have welcomed me with open arms. I remember at the very start; I was apprehensive about receiving feedback from the public contributors about my ideas and research plans. My nerves were soon calmed when the public contributors began offering their thoughtful suggestions and words of encouragement. From that point onwards, with each activity I have worked with the public contributors on, my confidence has grown tremendously, and I have been inspired to work with public contributors in new and creative ways.
In addition to acknowledging the benefits for myself, the public contributors involved have also commented on how they enjoyed the opportunity to learn new skills (such as analysing qualitative data), and explained that they can share these experiences when working on future research projects.
I truly believe the quality of the research that has been produced from this PhD has been enhanced by working with patients and the public throughout. The overall quality has been improved because each research phase has been completed with the support and input from public contributors. Therefore, this has meant the processes and rationale for each study have been clearly explained, carefully considered, and, where necessary, questioned by the public contributors. In turn, this has promoted transparency, openness, and rigour. Furthermore, feedback and suggestions from the public contributors on various aspects of my research has allowed me to revisit and improve my work and learn from these experiences so that in the future I am already aware of the steps I need to take to produce high quality work. I am eternally grateful for the support I have received from the individuals throughout this PhD. I am confident that the research produced from my PhD is of high quality and will have a significant impact in the real world because it has been shaped and influenced by patients and the public.
What reaction do you get during an engagement event?
As I mentioned in the sections above, I have had the opportunity to work with public contributors at engagement events, such as the Biomedical Research Centre (BRC) Science day. I presented with Eric Cooke who is a public contributor I have worked with throughout my PhD. At the event, Eric shared his experiences of being a participant in a clinical trial and his experience of working with me on my research. Eric used anecdotes from his engineering background to explain the importance of public involvement to the audience. His talk was captivating and humorous and, as a result, we were contacted following our presentation by an audience member and asked to present at the EDGE conference 2020 held by the Clinical Informatics Research Unit, University of Southampton (permission granted to share email content):
āThe reason for the contact was because a couple of my colleagues attended the BRC conference and told me they saw you and Eric present and that it was brilliant. They mentioned that it would be really good for you both to present at our conference as it would give Eric the opportunity to share his research journey and for you to share your PPI work. The talk would also be an important reminder to our audience why they are in the jobs they are in, for the patientā.
This quote exemplifies the power of the patient and public voice and the importance of providing a platform for public contributors to speak at engagement events. In addition, working with public contributors to disseminate and engage with wider audiences about research, demonstrated to me that I had explained my research clearly as Eric felt confident about sharing information about the research with wider audiences. After our presentation, audience members approached Eric and me to ask us about aspects of our presentation and to learn more about our experiences of working together. Speaking with PPI contributors at engagement events provides a space where it is possible to reflect on any challenges encountered and share our learnings that have come from our experiences of working together. By doing so, we hope our honest reflections and experiences inspire and influence future PPI practice.
References
1. Blackburn S, McLachlan S, Jowett S, Kinghorn P, Gill P, Higginbottom A, et al. The extent, quality and impact of patient and public involvement in primary care research: A mixed methods study. Research Involvement and Engagement. 2018;4(1).
2. (NIHR) NIfHR. Going the extra mile: Improving the Nationās Health and Wellbeing through Public Involvement in Research. 2015.
3. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637-50.
4. Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Services Research. 2014;14(1):89.
5. Wilson P, Mathie E, Keenan J, McNeilly E, Goodman C, Howe A, et al. ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study. Health Services and Delivery Research. Southampton (UK)2015.
6. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities. The Patient – Patient-Centered Outcomes Research. 2014;7(4):387-95.
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