People Make Data: Part 1

 “Ultimately, health data is collected by people, from people and for people. If researchers want to be trusted with data, we should trust people to help us shape the rules so that the data revolution in healthcare benefits everyone.” Natalie Banner, Nature Medicine, 2020.

This quote, from Understanding Patient Data’s (UPD) Dr Natalie Banner, reminds us that people’s data, i.e. patient data, is a means to an end and not an end in itself. In this post- Part 1 – we speak to UPD, a Wellcome Trust, Medical Research Council and National Institute for Health Research funded body, who’s work focuses on health data that is used for reasons other than individual care and without explicit consent. In particular, UPD “provide objective information about how patient data is used and bring the views of patients and the public to policymakers and data holders, to ensure data is being managed and used in ways that are worthy of public trust.”

The post is the first of a series of posts, in which we will hear from UK based organisations who are working in this area and patients themselves.

Background: using patient data in research

Patient data, for example hospital records and GP records, is collected as part of routine National Health Service (NHS) care. They constitute one of the largest sources of health data in existence. Over the years, researchers, policy makers and others have sought to harness their potential in carrying out evidence-based research, seeking to enhance our understanding of disease, improve patient care and service delivery. At no other time has using patient data for research been more in the spotlight than under the current COVID-19 pandemic.

As researchers, we have a duty to ensure that we recognise the individuals who sit behind that data. But even more than that, we should seek to involve patients in our research, because really, who understands what they have experienced better than them?

As an Early Career Researcher (ECR) working with patient data, and coming from a non-clinical background, appreciating the individuals behind the ‘numbers’ is not something that my training in Econometrics prepared me for. Of course, my primary motivation for pursuing my career in health research is to make a difference to individuals lives. Nonetheless, it is all too easy to become buried in the methods, producing fancy charts and output displaying significance stars, that the people behind the numbers become blurred in the background.

The use of patient data by social scientists and ECRs – who are often limited in resources, contacts and time- is becoming more common. With this comes an increased need to ensure that those researchers know how to recognise and include the patient voice in their research, and how to be transparent about their uses of patient data.

In what follows are some questions and answers from UPD’s Communications Officer Grace Annan-Callcott, who kindly agreed to talk to eCRUSADers about using patient data in research and in particular about public/patient engagement.

A conversation with Understanding Patient Data

How much and what sort of public/patient engagement work does UPD do?

“We tend to commission public engagement work on issues around patient data. Our aim is to feed the insights we get through to policy and practice”. 

Grace pointed me to a couple of recent things they have been working on. Firstly, the Fair Partnerships Report, one of UPD’s “largest pieces of engagement work to date, which looked into what the public thinks about different kinds of businesses and organisations using NHS data”.

Secondly, a new project with the National Data Guardian and Science wise, which will explore ‘public benefit’ and shape new guidance to make public benefit assessments more consistent across both health & social care”.

So, how do patients feel about the use of their data?  

“I’d suggest having a look at the fair partnerships report, or this deck where we collected lots of public attitudes research together in one place. It needs an update with a few bits of recent research, but many of the key messages still stand”.

The Fair Partnerships work was a mixed methods public engagement programme consisting of round table discussions, citizen’s juries and an online survey (completed by just over 2,000 adults from across the UK). A key finding of the report was that “all NHS data partnerships must aim to improve health and care”. I believe this point will resonate with many ECRs, who often have difficulty in demonstrating “How will your research benefit the public?” Will our PhDs or first post-doc research projects actually translate into patient/public benefit? We can get ourselves all worked up when writing applications to use patient data, trying to demonstrate and perhaps exaggerate the public/patient benefit of our research. Could making false promises undermine trust further?

Whilst we are entirely motivated by the hope that our early career research will translate into public/patient benefit, it is likely that it will not, at least not to begin with. But as ECRs working with administrative health records, we discover things that we did not set out to, we develop skills in analysing complex data sets, we generate new research questions, all of which could have patient/public benefit in the future. That being said, the responsibility lies with us to be both realistic and transparent about the aims of our research and the potential public/patient benefit that it could have. After we have carried out our research, we must be transparent and document what we have learned and how that learning will go on to contribute towards patient/public benefit at a later stage. We need today’s ECRs to be trained in analysing patient data, otherwise tomorrow’s patient/public benefit might not emerge.

Have you done any public/patient engagement with Scottish patients?  

“We haven’t done work with Scottish patients yet, and we’re very aware this is a gap for us. It’s something we’d like to do in the near future”.

It is great to hear that UPD are hoping to do work with Scottish patients. I am not aware of any groups in Scotland who are carrying out similar work with public/patients across the board (do get in touch if you are!).  For now, can we assume the views from the Fair Partnerships participants would also hold for the Scottish population? As Research Data Scotland (RDS) looms on the horizon, it appears Scotland has much further to go in terms of gathering views from the public on how their data is used.

Should all researchers working with administrative health data do public/patient involvement?

“I’d suggest patient and public involvement is always valuable, to shape the work you’re doing too, not just because ‘it’s the right thing to do’. With the fair partnerships report, we got lots of incredibly interesting and useful insights on a challenging topic”.

In an ideal world, we would carry out public/patient involvement in our PhDs and post-docs. However, ECRs may have limited contacts, resources and time, meaning it might not be feasible to do so. In particular, if you are working with a large national dataset, would it be realistic to capture representative views of the country on how you plan to use their data?

Well maybe not, but there are other things we can do. For one, Grace pointed out that “use MY data have created a data citation to help researchers acknowledge the contribution patients make to research”. This citation is a means to show gratitude to patients for allowing researchers access to their data, as well as enhancing the visibility of that use.

Another thing that crossed my mind was getting someone you know, with no knowledge about the research you are doing, to read your research proposal. Can they see the public/patient benefit in what you are proposing to do?

The outbreak of COVID-19 has clearly pushed the use of patient data into the headlines and accelerated the use of patient data in research (see the OpenSAFELY project in England). I asked Grace if UPD feel this presents an opportunity to demonstrate how we can safely and successfully use patient data in research or a challenge to maintain public trust in the use of their data?   

“Interesting question. I think it does both! It’s brought a lot of visibility to how important patient data is both for making decisions about public health and for research, especially research for new treatments or therapeutics. Patient data has never been more present in the national discourse as it is now. However, it also presents risks to public trust, as decisions are being made quickly, and sometimes with not enough timely transparency from government to the public about what’s happening”.

Are there any other UPD resources that you would recommend to eCRUSADers working with Scottish administrative health data? 

“Definitely the data citation – it would be great if you’d be able to use that on your research papers and communications.”  

“Also, lots of partners say this is really helpful – it’s research we did into the best words to talk about data, to make what’s happening more accessible”

“Our resources are summarised in this quick guide

Thanks very much for taking the time to answer these questions Grace. There’s clearly some great work going on at UPD and there is definitely a lot that researchers who are working with patient data can learn from that work. It would be great to see more public and patient engagement work on using patient data in Scotland- if anyone reading is familiar with any then do get in touch!

Look out for our next People Make Data post where we will be hearing from useMYdata.

#datadaveslives #admindata

 

 

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