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Patient Public Involvement in Research Using Administrative Data: Part 1

by | Jul 24, 2023

Hey eCRUSADers! It has been a minute! We’ve had a bit of a break whilst I was on maternity leave but let’s just get right back to sharing useful information to help us all navigate the world of research and administrative data in Scotland (and beyond!). This post is Part One of a two part post on Public and Patient Involvement (PPI) in research using administrative data. In this part, we discuss PPI, think about why it is important and I will convince you why it will benefit your research. Before we get started, I just wanted to give you an overview of my journey through PPI and set the scene that motivated this post.

Disclaimer: This post reflects my personal experiences and may not be a representative view of an ECRs journey. If you have a different experience then eCRUSADers would love to hear from you so do get in touch!

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.

Over the last couple of years, I have found myself in and out of hospital. In particular, in August 2021, I was unexpectedly diagnosed with Relapsing and Remitting Multiple Sclerosis. Then in June 2022, I gave birth to my baby girl (less unexpected!). Fast forward to today, and following these recent interactions with the Scottish health care service, I feel I have an even further understanding of the value of the patient/user/public perspective and how fundamental it is to developing and conducting research.

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 : )

What is Patient Public Involvement?

There are several definitions of PPI out there and since health care data are among the most common types of data utilised in research, many of the definitions relate to the health care setting. The National Institute of Health Research (NIHR) defines PPI as:

“research being carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them”, where “the word public can refer to patients, potential patients, carers and people who use health and social care services, people from organisations that represent people who use services as well as members of the public”.

In my area of research, Cancer Research UK echo the NIHR’s definition and define PPI as:

“when patients use their experiences of cancer to help shape research, so that it is carried out with or by patients, rather than to or for them. You can consult, collaborate or partner with patients at all stages of the research cycle”.

PPI is distinguished from public participation and public engagement. Public participation refers to instances where a patient or member of the public takes part in research as an active participant, for example in a clinical trial. Public engagement sits somewhere in between participation and involvement, and generally refers to the sharing of information and knowledge about research with the public (Health Research Authority). ADRUK define public engagement with particular respect to administrative data:

“a purposeful set of activities designed to promote an ongoing dialogue with the public about administrative data research, driven by active listening and responding.” (ADRUK website)

From my perspective, PPI encompasses all of the elements above, but in particular the words  collaboration, dialogue and partnership stick out the most. For me, PPI is a continuous conversation with those whose data we are using, to understand specific disease or service areas, ultimately with a view to improving their lives in a meaningful way.

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:

  1.  Public interest – any research using administrative data must demonstrate that it is in the public interest and has potential to lead to tangible benefits for society.
  2. Privacy and security – data being linked and used for research must be de-identified, and protections must be in place to prevent it from being re-identified or misused
  3. Trust and transparency – trust in those holding and using data is paramount; and transparency around how data is held and used is essential.” (ADRUK, 2020)

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.

Why is Patient Public Involvement helpful for research using administrative data?

  1. Improve the quality of your research By involving the public and the people who are experiencing the very topic you are researching, you immediately make your research more relevant, have more value and therefore the potential for your research to have impact is greater. All of this improves the quality of your research.
  2. Uphold the social licence:
    • Public benefit: Through the continual dialogue and collaboration with patients and the public, PPI ensures that your research is carried out in the public benefit.
    • Trust and transparency: Working with patients and the public enhances trust and ensures transparency in what we do.
  3. Enhance your funding applications. Many funders now require researchers to demonstrate how they will carry out meaningful PPI in their research programmes. Applications with a robust plan for PPI will do better at meeting this requirement.
  4. Create longstanding relationships. Oftentimes, you might continue to interact with the people who were involved in your first project long after the end of that project. Good PPI can result in legacy relationships that can continue to grow and benefit your future research.
  5. Save money and time: involving patients and the public in your research from the outset could reduce longer-term costs in money and time. For example, less iterations of project proposals and funding applications. It might also reduce the chance of having to alter project design later on i.e. add important data sets/variables which incur cost and time delays. For some figures, check out this paper.

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:

 

Some useful articles: