In the second of our series, ‘People Make Data’, we hear from use MY data, an independent UK movement that was set up in June 2015 by a number of patients, carers and relatives to address the slowdown in cancer research in the wake of the Care.data programme. Since then, the remit of use MY data has grown and they now cover all types of patient data.
Ailson Stone (Coordinator) and Chris Carrigan (Expert Data Adviser) are part of the use MY data Secretariat, which works on behalf of the use MY data members. Alison and Chris have kindly put this post together to share with eCRUSADers a little about how use MY data started, the work that they do and most helpfully, some key messages for early career researchers to take away.
Involving patients and maintaining transparency are paramount to ensuring public trust. Any researcher who is working with patient data should make sure they do just that and a great place to start is by looking at the great work being carried out by use MY data. The importance of doing so has been duly amplified by the current COVID-19 pandemic and there is a need to learn from past mistakes at such a time.
Thank you very much to Alison and Chris for sharing this post with us.
Bringing the patient voice to discussions about patient data
Back in the middle of 2016 NHS England announced the closure of the Care.data programme. You might wonder why this is relevant to eCRUSADers, or indeed why we’d start a blog that way. We should explain.
In October 2013 NHS England set out their intentions to link data, for the first time, from different NHS providers spanning primary and secondary providers, “supporting studies that identify patterns in diseases, responses to different treatments, and the effectiveness of different services.”
However well-intentioned the concept, by February 2014 ministers had halted the programme, following several media stories about data being sold and amidst concerns about lack of awareness, lack of consultation and lack of clarity about how the data would be used.
By 2015 around 1.5 million patient records were flagged as opting out of Care.data. The loss of public trust, negative media coverage and huge risk-aversion by data controllers, saw data access for researchers grind to a near halt or actual halt.
At the National Cancer Intelligence Network conference in Belfast in June 2015 the widespread dissatisfaction amongst researchers and patients came to a head, in a panel Q&A with the chief medical officers of the UK. Data access for cancer research had effectively stopped. But researchers needed to use the data, and patients wanted their data to be used.
The birth of use MY data
In response to these concerns, patients, carers and relatives gathered together, over a lunch time session. The session was jointly hosted by Cancer52, Cancer Research UK and the National Cancer Intelligence Network.
Its focus was on how current cancer patients could help turn their data into the best outcomes for future cancer patients. ‘Donate your data’ was proposed – an organisation where patients would willingly give their data for this purpose. The patients attending the session showed unanimous support for the concept of donating their data.
A Working Group discussed the practical ways forward. Most felt that the name ‘Donate Your Data’ was not accurate – as cancer patients said their data had already been taken, and the focus should therefore be on how their data would/could be used. This led to the name change of use MY data. The movement rapidly expanded to include patients, relatives and carers from all disease areas.
From its beginnings in 2015, use MY data has evolved through a rolling programme of engagement and communications. We have hosted at least two patient data workshops each year, alongside a programme of campaigns, networking, and presence at national events. We are increasingly being asked to 1) advise other organisations about patient engagement and 2) engage with organisations who hold patient data.
Most recently we have moved to deliver a series of webinars, open to all, but designed and delivered by and with our members.
“The strength of use MY data is the multiple patient voices that it brings to the discussion.”
Since the outset, our members have stated some clear, common, basic principles about how patient should be used. But with a wide and varied membership, not all members agree on all areas, as you might expect.
We very much see this spectrum of views as an asset, as we believe that we need a diverse set of views to help in discussions and decision making. So, whilst some traditional organisations might see conflicting views as a something of a challenge, we see this as a real benefit.
There are several principles which underpin use MY data and are about data being used for the benefit of patients and society:
- Transparency
- Simple access to data
- The patient voice
- Recognition of the patient (citation).
“As a data user, most of our work relies on using data – it’s important we are transparent about how we use patient data.”
Anyone using patient data must ensure that this happens in a way that will engender trust. It needs to be done openly and transparently, be subject to challenge and allow individuals a choice in how their data is used.
The concept of transparency has grown in prominence but translating the concept into action is often seen as difficult.
As a researcher, what does it mean to be transparent? use MY data has produced a checklist, which we have encouraged people to use:
- Accessible – easy access to information
- Understandable – the right language for the audience
- Relevant – addresses audience concerns
- Useable – in a form that meets the audience needs
- Assessable – is checkable/provides sufficient detail
- Being as proactive with ‘bad news’ as with ‘good news’
- Being timely with communication.
A particular frustration for members is the inconsistency about how controls, which are placed around patient data, are interpreted and applied. If all parts of the UK are subject to the same laws (the General Data Practice Regulation (GDPR) and Common Law), why do the different parts of the UK implement different policies about data access?
“Is the patient voice heard enough so that we learn from patient’s experience? To be honest, no.”
We believe that the patient voice should be included in all discussions about patient data and are actively working to make this happen.
It can be hard for an individual voice to be heard, so one very practical thing that use MY data does is to collate the voices of patients in response to national consultations. That has included consultations on topics of Artificial Intelligence, Trusted Research Environments and Private Healthcare Information and from organisations including the Information Commissioners Office, the National Data Guardian for England and the MHRA.
Because it has a philosophy of positive engagement and co-design, use MY data is seen increasingly as a trusted group through which patient opinions, views and indeed speakers can be sourced. Another practical thing we do is to work with the organisers of large events focused on patient data, and lobby for patient speaker(s) to be included.
Similarly, we highlight engagement opportunities to use MY data members – to sit on groups, panels and committees that are concerned with patient data.
“I think the policy makers should get out the message of the benefits of using the data and the controls around that 
data so that people feel better reassured.”
We have created a library of ‘case studies’ where patients, relatives and carers speak direct to camera, highlighting the benefits of using patient data correctly. We have seen these short videos being used in several different places, in the UK and beyond.
Then there is the point about recognition. Early on our members created the Patient Data Citation. The Citation acknowledges the use of patient data in analysis or research, highlighting that research is only possible because of patients:
“This work uses data provided by patients and collected by the NHS as part of their care and support”
Public Health England began to use the statement and it was then adopted by Understanding Patient Data, who were instrumental in spreading the message. It is now seen as a standard and has been widely adopted by national bodies, academia and commercial users.
“We need data and tissue and protein samples to enable us to do research which will lead to earlier diagnosis and better outcomes.”
Another example of action we have taken is The Issue with Tissue campaign. At our May 2018 workshop, members discovered that there is an extremely low use of donated human tissue samples – approximately only 15% of samples are ever used. Our members wanted to understand this, highlight areas for improvement and lobby for these improvements to be made.
We are working jointly with partners at the Medicines Discover Catapult and Incisive Health on this campaign, in which patients’ voices are directly influential. We have seen these voices and the report beginning to be used widely, despite the pressures of the pandemic response.
“Joining use MY data has helped me understand better the importance of my data. Research and all data should be shared.”
Our members are patient advocates who are either patients, relatives or carers.
We have another layer of membership – our associate members who are united by their interest in supporting our work. This are clinicians, researchers, charity workers, academics, public and commercial sector workers.
As an inclusive movement, we encourage new members from all backgrounds, so that we can collectively build confidence in the use of patient data, to save lives and improve outcomes.
Our current areas of focus are around the uses of data in relation to the COVID-19 response and in particular whether the positive advances made in terms of data collection, linkage and access in all parts of the UK can be retained in a safe, open and transparent manner, improving the experience of researchers with support of patients.
“We need to be clear and concise on the benefits, risks and how these will be managed, creating a clear strategy for engaging patients and the public.”
We will only realise the potential benefits of patient by ensuring the patient voice has a fundamental role. And all this has to be done in an open and transparent way. That remains the aim for use MY data.
As one delegate from a recent workshop commented; “Despite the challenges, I think more could be done to help researchers and less blaming of them please.”
So, if we had to summarise some key points for early career researchers, we would give three things to remember and take away:
- Don’t be afraid – the patient voice can often be the solution, not the problem
- Be transparent in all that you do – the benefits of transparency outweigh the difficulties – and communicate this clearly.
- Whenever you use patient data, please Say what you do, and do what you say.