Category: People make data

People Make Data: Part 4

I’m thrilled to have Mr Steve Clark contributing this post to the eCRUSADers People Make Data series.  Steve has a wealth of knowledge about cancer care throughout the UK and since his colorectal cancer diagnosis in May 2013, he has been involved in various projects and campaigns within the colorectal cancer sphere, including setting up his own Strive for Five campaign. Steve also has experience working closely with academics to shape research, including co-authoring on a recent publication with myself and colleagues from Edinburgh, Glasgow and Oxford.

In this post, Steve talks to eCRUSADers about his experience as a patient, his involvement in the Patient and Public Group of Bowel Cancer Intelligence UK (PPG BCI-UK) and what he has learned about the system of cancer care and cancer data during his journey. Crucially, Steve highlights the importance of actively engaging patients and the public in the research process from the outset.

Over to you Steve, the floor is yours.

I was diagnosed with advance (stage 4) colorectal cancer in May 2013, the initial prognosis looked fairly bleak as it had already spread to my liver and both lungs. I’ve been very lucky since then thanks to an excellent team who’ve given me great care – a skilled specialist colorectal surgeon was able to remove my very large primary tumour without the need for a stoma, and my chemotherapy was so successful that the planned ablation operations were cancelled. Since then I’ve been on maintenance chemo which has kept things nicely under control with only 2 recurrences in 8 years, and I’ve had clear scans for the past two years. At my recent review when I told my oncologist I was targeting 10 years he replied “and beyond”!

I’ve been aware of the fractured nature of cancer care for most of the 8 years since I was diagnosed. I’m referring here to both clinical care and patient data. I should say that I have been fortunate in my care, but through my voluntary work I’ve seen the variations evident throughout the UK.

As patients, we really need a united cancer network. A network that ensures our doctors have knowledge of, and access to, the best care for their patients. A network where the data on cancer care is available across borders to ensure best practice is readily recognised and gaps in care are addressed quickly.

As one, solitary patient, I have no way of affecting change in healthcare, but I do try to help my fellow patients as much as I can. I offer support through my Strive for Five campaign with the aim to give hope to people with a stage 4 diagnosis, but my voice is too small to affect policy. This is one of the reasons that I was keen to volunteer with some of the charities. I’m a Campaigns Ambassador with Cancer Research UK and have volunteered for some time with Bowel Cancer UK. Although most of my work with BCUK has been focussed on patient support, I’ve been involved directly with a number of key campaigns including reducing the bowel cancer screening age.

Almost two years ago I started volunteering on the Patient and Public Group of Bowel Cancer Intelligence UK (BCI-UK), my first time on a formal PPG. BCI-UK is the umbrella body overseeing two important initiatives: the UK Colorectal Cancer Intelligence Hub which runs the COloRECTal cancer Repository (CORECT-R), and the Bowel Cancer Intelligence Programme which aims to improve patient outcomes by identifying and addressing variations in care. The excellent work of the team at BCI-UK is really highlighting how vital it is that we connect the various datasets around cancer care, so that researchers can interrogate these data and directly guide improved clinical care.

The adage states the definition of madness as “doing the same thing over and over again and expecting a different result”, surely that applies to cancer care – if we don’t review what’s working best, how can we hope to improve?

And it’s not enough to simply analyse the data, the findings have to be followed up and implemented, they can be used to educate medical and surgical practitioners to help them improve their care. This could give significant improvements in patient outcomes quickly, something that is urgently needed for all patients with advanced cancer who don’t have the time to wait for new treatments to come through research – we can improve how current treatments and procedures are utilised quickly and relatively cheaply.

It’s not always about new treatments, we need better use of existing therapies through recognising and sharing best practice.

I was lucky enough to be co-author on the recent paper “Creation of the first national linked colorectal cancer dataset in Scotland: prospects for future research and a reflection on lessons learned” which is a clear step in this direction by at least making the Scottish data accessible. That’s a start, now the real work begins by making the data work for us!

Some of the ways that this type of dataset could be used for colorectal cancer care could include:

  • Identifying hotspots across the country – good and bad – and addressing the gaps;
  • Maintenance chemo for long term care of stage 4 – what regimens get best balance of effect and lifestyle;
  • Impact of different support programmes on treatment success and tolerability;
  • Clear evidence to help drive significant investment to ensure early diagnosis of cancer

I am so pleased to see more Patient and Public Groups being set up for individual studies and study groups, this can only be a good thing. I would encourage all researchers to do this as a way of ensuring their work is truly patient-centric.

This really doesn’t have to be an arduous process. The BCI-UK PPG is a large group but that’s because of the volume and range of work it’s involved in. I’m a member of other PPGs relating to individual studies that only have one or two patients, and this can work well so long as those patients can represent more than their own individual experience.

The key advice for PPG involvement is the earlier the better, ideally right at the start, when you’re at concept stage, but you can bring us in at any point. The sorts of things a PPG can help with include the more obvious things like writing the plain English version of the proposals and reviewing manuscripts, but also giving insight into what the outcomes of the study should be and what may or may not be acceptable to a patient within the study.

I truly believe that we are achieving great improvement in the care of colorectal cancer, but so much more is needed, and the way forward is by collaboration between researchers, physicians and surgeons, with patients not just at the centre of the concepts, but actively engaged.

People Make Data: Part 3

I am very excited to share this post with you today! It is the third of our People Make Data series and this time, Pete Wheatstone talks to us about sharing patient data from a patients perspective.

I had the pleasure of meeting Pete at the end of 2019 at a useMYdata workshop in Leeds, where we got to talking and realised that we had in fact already met on Twitter?! Pete is a former cancer patient and a member of useMYdata (who we heard from in People Make Data: Part 2). Pete is an extremely active and experienced Patient and Public Involvement (PPI) representative for a number of data research programmes. These include, the UK Colorectal Cancer Intelligence Hub Patient Public Group; Chair of the DATA-CAN (the HDR UK Hub for Cancer) PPIE Group; National BOwel Cancer Audit Patient & Carers Panel; IQVIA Patient Group, the National Institute for Health Research (NIHR) Royal Marsden/ICR Biomedical Research Centre (Digital Theme); Cancer Research UK Patient Data Reference Panel; the European Institute for Health Innovation Through Health Data (i-HD) and an association with (through i-HD) – to name but a few!

Pete’s contribution to the promotion of the safe use of patient data in research is second to none and it is a real privilege to have him offer his insights in his post. In his neat analogy that follows, Pete helps us really get to the bottom of what sharing patient data is all about.

“We’ve been sharing information since before language was developed”

At a most basic level, creatures that live in groups, from insects to humans, share information between themselves such as the presence of danger and the location of food. This is because it is a good method of protecting the group and helping it to flourish. Whilst living in caves, our gestures, grunts and groans gradually became more sophisticated allowing us to share more detailed information that evolved into language. However, even today ninety percent of our communication (and therefore information) is still non-verbal. You can tell things about a person just by such things as their facial expressions, how they sit or move their body, their tone and volume of voice, the level of eye contact. We all sub-consciously and consciously do this to enhance the communication of our thoughts and feelings. It helps us to form relationships and friendships. Surely, acquiring information is the reason we send our children to school and why we study. We exchange information about our  thoughts and our feelings when we socialise.

But when it comes to personal medical information this is, of course, a little bit different – or is it? Whilst many of us like to share some of this information, there may have some aspects that we feel we want to keep to ourselves. Of course, it is our right to keep that information to ourselves if we wish or tell a trusted person in confidence.

Medical data is just bits of information held electronically. But information, when held as data, can be easily shared with others for both benefit and, potentially, disadvantage. However, if that data is anonymised (in other words all information is removed that might identify us) and it is added to information from thousands of other people, might we hold a more relaxed view? And if that data was only accessible by trusted people, authorised to access that information only for a very specific and approved purpose should we have any substantial concern?

As current or future patients, we benefit from improved treatments and services because previous patients shared their medical information. Do we not, in turn, have a moral obligation to share our information to benefit our children, grand-children and future generations of humanity?

I believe that, providing the current legally required data security controls in place and those that hold the data are open and transparent (about who data is accessed by and why), there is no logical reason why we should not share our anonymised medical data – for the benefit of us all.

People Make Data: Part 2

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 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 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  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:

  1. Don’t be afraid – the patient voice can often be the solution, not the problem
  2. Be transparent in all that you do – the benefits of transparency outweigh the difficulties – and communicate this clearly.
  3. Whenever you use patient data, please Say what you do, and do what you say.


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.

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