My Patient Public Involvement journey
When I started carrying out research using administrative data, I had no idea about what it means to involve patients and the public in your research. As a little bit of background, I studied economics throughout my undergraduate and masters degrees. The research I carried out during that time used secondary data in the form of surveys. The data in these types of surveys are collected specifically for the purposes of research with the informed consent of all participants. If PPI had already taken place, it was done before the data got to me.
In 2014, I started my PhD in the School of Economics at the University of Stirling. I began working with pseudonymous administrative health and social care data (that means the data have been changed so that it is not possible to identify any individual within it e.g. no names, addresses etc). Consent for this data was not informed; rather, the processing of this personal data was permitted under Section 6.1(e) and 9.2(j) of the General Data Protection Regulation. I continued working in a similar fashion to how I had done in the past, analysing the data that I could see on my screen and writing up my results.
My research was primarily looking at the use of formal and unpaid care services by older people living in Scotland and ultimately I was hoping that my research would shed light on this important topic and contribute to improving the lives of older people living in Scotland. This topic was close to my heart because my Grandmother (photographed here) was undergoing assessments for her health and care needs and she was in and out of hospital frequently. I spent a lot of time with her, my family and her formal carers, getting to know the system and seeing in real time how the discussions we had as a family, influenced the care she received and her experience as the person receiving those services. It was not until I looked back that I realised how important this input was to my research.
When I joined Edinburgh Health Economics (EHE) at the University of Edinburgh in 2019, I thought much more about how important it is to involve and embed patients and the public into research using administrative data. Not least because this data belongs to people and what we do with it should be shaped by them, but because people who experience the things we are researching have invaluable insights that we might not see.
Armed with these experiences, I want to use this space to share how to involve patients and the public in research using administrative data. I thought this would be especially useful for other ECRs working in the social sciences (or like me in an Economics department) where PPI is perhaps not the norm and for those PhD students who are not part of big research programmes with established PPI groups. So here goes : )
Do people want us to use their data in the first place?
Without the public’s support to use their data for research, we should not use it in the first place. Think back to the controversial Care.Data initiative of 2014. Almost ten years on, do we, as academic researchers, have the public’s support?
Findings from Data and Analytics Research Environments UK’s (DARE UK) recent public dialogue on who uses the public’s data concluded:
“Workshop participants agreed that they were comfortable with academics at universities studying sensitive data for research in the public benefit – subject to robust security.”
Administrative Data Research UK (ADRUK) also recently reviewed the published literature on the UK public’s attitude towards the linking and use of administrative data for research and concluded the same.
This is good news! Generally, we do have the public’s support to use their data to carry out research. But, there are a few conditions that we must ensure we meet in order to uphold the ‘social license’ that we rely on to do so. In particular, ADRUK highlighted three conditions researchers must meet:
We should hold these conditions in our minds at all times when carrying out research using administrative data and PPI can help us to meet them. In particular, PPI is a great way to ensure that your research is in the public interest (more on this later). You can find out more about what it means for research to be in the ‘public interest’ or to produce ‘public benefit’ here.
How has Patient Public Involvement benefited my own research?
In my own experience, carrying out PPI has opened my eyes to the unique insights that patients and the public have to offer and I know that this has and continues to benefit my research. To give an example, in March 2021, we published a paper describing a linked administrative colorectal cancer dataset in the International Journal of Population Data Science. When we wrote this paper, we had a public engagement approach rather than PPI explicitly. Specifically, once we had a draft of the paper we asked if our PPI group could take a look and offer their comments. PPI member Steve Clark did this and we were taken aback at how helpful his comments were. So much so that Steve became a co-author on the paper and went on to deliver a webinar with us to over 100 people. Steve’s contribution to the paper and the webinar helped make our work more relevant and improved the outreach of it. The lesson learned from this interaction was that we should have started off with PPI in the first place.
Steve and I continue to work – although I don’t know if we can really call it that – together on other projects, including writing this post! There we are on one of our regular Zoom calls. I would certainly say it is a perfect example of where PPI can create relationships that last. The work that Steve does to raise awareness, fundraise and provide information on bowel cancer via his Strive for Five and Beyond platform, is truly inspirational and I would encourage you to check it out. The activities he is involved in clearly demonstrate the impact patient involvement can have on research and more importantly on practice.
I hope that this has been helpful, in the next part of this two-part post, we will discuss the steps you can take to embed good PPI within your research. The first of which is understanding what PPI is and why it is important for research- hey look at that, you’ve already started this step by reading this post! I hope I have convinced you that PPI will benefit your work, so stay tuned to find out how you can do this!
Some useful reports:
- ADRUK (2022) A UK-wide public dialogue exploring what the public perceive as ‘public good’ use of data for research and statistics.
- ADRUK (2020) Trust, Security and Public Interest: Striking the Balance. A review of previous literature on public attitudes towards the sharing and linking of administrative data for research.
- Administrative Data Taksforce (2012) The UK Administrative Data Research Network: Improving Access for Research and Policy.
- DARE UK (2022) Building a trustworthy national data research infrastructure: A UK-wide public dialogue
- INVOLVE (2012) Briefing notes for researchers: involving the public in NHS, public health and social care research. INVOLVE, Eastleigh
- Scottish Government (2012). Public Acceptability of Cross-Sectoral Data Linkage.
- Wellcome Trust (2013) Sharing Our Practice: Successes and challenges of public engagement in the Wellcome Trust’s UK Centres.
Some useful articles:
- Castell S, Charlton A, Clemence M, Pettigre N, Pope S, Quigley A, Shah JN and Silman T, March 2014. Public Attitudes to Science 2014. Section 11: Attitudes to Big Data.
- Van Mil A and Hopkins H, 2015. Big Data: Public views on the use of private sector data for social research, A Findings Report for the Economic and Social Research Council.
- Aitken M, de St Jorre J, Pagliari C, Jepson R, Cunningham-Burley S, 2016. Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Med Ethics ;17(1):73.
- Carter P, Laurie GT and Dixon-Woods M, 2015. The social licence for research: why care.data ran into trouble. Journal of Medical Ethics, 41: 404-409.