A movement of patients, carers and relatives

Harnessing the patient voice to build confidence in the use of patient data to save lives and improve outcomes

Privacy policy

Uncharted territory – Using patient data to tackle COVID-19Graphic

Thursday, 28 May 2020

Our patient-led webinar focused on how the use of data has changed amid the COVID-19 pandemic.

The webinar brought together patients, relatives and carers, the public and professionals, was open to all and was free to join.  

use MY data always strives to present a balanced view and so, while we work to highlight the benefits of using patient data, we acknowledge the risks too.  Our members believe that transparency is key.  Transparency means operating in such a way that it is easy for others to see what actions are performed.  In a nutshell – Say what you do, do what you say.

We are currently in uncharted territory with changes happening rapidly within the health data landscape. Although the COVID-19 pandemic has seen a significant focus on data, it has also raised a number of important questions about the sharing and use of data, as well as highlighting the challenges that are associated with the use of data.


Chris Carrigan, Expert Data Adviser, use MY data - Webinar Chair

Natalie Banner, Lead, Understanding Patient Data

Paul Charlton, Advisory Group Member, use MY data

James Peach, Commercial Director, DATA-CAN, the Health Data Research Hub for Cancer


Chris welcomed delegates and invited the three speakers to talk us through what is happening and what the future opportunities and challenges are.


Natalie Banner

Natalie updated delegates on what is different about the way data is being handled and what positive changes have been made.

Natalie focussed on three areas where the use of data has changed to manage COVID-19, saying it is vital to situate these areas in the broader and longer-term context of data use and technology.

“I’m really interested in the bigger picture – critically, where patients’ voices need to be heard, so we can make sure the data is serving the interest of society and the public."

  • The Control of Patient Information Regulations

The Control of Patient Information Regulations (COPI) allow the processing of confidential patient information without consent, as long as certain conditions are met.  The Regulations were changed in March to provide NHS Digital with the necessary statutory power to disseminate confidential patient information without consent, to support the response to COVID-19.     The Secretary of State issued four notices requiring NHS Digital, NHS England and Improvement, all healthcare organisations, Arms Length Bodies, Local Authorities and GP practices to process confidential patient information for purposes related to COVID-19.

“It’s incumbent on those managing and using this data to be open and honest and fully transparent about it.”

  • COVID-19 Data Store

The COVID-19 Data Store has been set up by the NHS with commercial providers, to bring together a disparate range of datasets to help manage and understand various aspects of the pandemic.  Alongside the valuable insight gained from this, there have been concerns about the commercial providers.  They are providing software and tools to enable data to be collected, not brokering or selling it, but there are questions about norms, infrastructures and the long-term implications.  More transparency and public information is needed, including how the data is being managed and processed. 

  • Contact Tracing

The manual contact tracing system has now formally launched, to trace those who have been in contact with someone who has a confirmed COVID-19 diagnosis, so that they can take the appropriate action to isolate themselves.  The system is a manual process which will be supplemented by a mobile phone app which, when downloaded, tracks movements and close contacts of others who have downloaded the app.  Again, this raises lots of questions, including who is collecting the app data; how long the data will be stored, where it is stored and who will have access to it.  The plan is for the identifiable manual contact tracing data to be retained for 20 years for people with Covid-19 symptoms and Natalie emphasised the need for further information and justification of that retention period. This is separate to the COVID-19 Data Store.

“In a sense, despite the horrendous trauma this pandemic is causing, it may well be an opportunity for public debate and discussion about the balance, the benefits and risks of data use and the kind of trade-offs we’re willing to make as a society, to ensure we can manage this pandemic.”

Natalie emphasised how critical the patient voice is to the conversation; there is a risk that decisions are made quickly and that conversations about patient data need to factor in the opinions of all in the longer-term.  That said, NHSX is doing its absolute best to be open about the work it is doing, and understands the spirit and ethos of transparency.

Natalie concluded by highlighting:

  • There is a dent in public trust, but transparency over the rationale and the reasons will help protect against some of the public controversy and stigmatisation. The best of intentions have not always translated into the most transparent of practices.
  • There are gaps in data collection and quality.
  • Data will be stored in the COVID-19 Data Store with a body overseeing this, but the criteria they will use to judge whether data can be requested or not, is not as transparent as it should be yet, which is a concern.

Natalie's slide is available here.

Paul Charlton

Paul examined the changes from a patient’s perspective. What do these changes mean?  Do we understand the changes and what challenges do you think we face?  Have these been communicated effectively?

Paul highlighted that “The strength of use MY data is the multiple patient voices that it brings to the discussion.”

The public perception of the way data is being used in the management of the COVID-19 pandemic has generated a lot of concern, for Paul.  How is data used, mis-used or not used to the benefit of the community during the pandemic?

“If you fail in your communication strategy, you fail in your management of the disease.”

In general terms, use MY data’s focus is for personal health data to be put to work comprehensively and for data to be released effectively, to support improvements in health care.

The key issue Paul wanted to communicate was how we begin to trust each other, trust professionals and institutions and rebuild trust when it has been broken. 

He summarised by saying: “People should be treated as moral equals, worthy of respect. While individuals may be asked to make sacrifices for the public good, the respect due to individuals should never be forgotten.”

Paul's slides are available here


James Peach

James talked about the potential opportunities which may arise for researchers accessing this data, focusing on how the data could be used and what the potential difficulties are.

James emphasised that data sharing has rarely been more important than it is now.

“The pandemic has enforced that data does save lives and the use of data is essential in saving lives – with that in mind, the public opinion on how we should use data has been reinforced.”

The pandemic has shown that data access can be improved and that there have been bureaucratic impediments in the way it has been used.  For instance, removing these barriers has led to faster understanding of the interplay between cancer and COVID-19; the data has been coming out in real-time in a way it hasn’t before.  “Normally, this data would take around three months to pull together; we were able to get it in just 10 days.”

One of the impacts of the pandemic is that it is now easier to share data in real time, which means we can now manage our healthcare system better.

“The COVID-19 pandemic has reinforced that data can save lives. It’s also highlighted that data access can be improved, while major opportunities have arisen.”

  • Better clinical services, particularly for rarer or less-known diseases, as doctors can learn from every case.
  • There is better public and patient understanding, as they can find out what happens to ‘patients like me’.
  • Better health service management, as we can compare and understand outcomes.

James summarised by emphasising that  “We’re able to make positive choices, but these choices must be patient-led. It must be transparent.”

James' slides are available here.


Question and Answers from the Audience

The webinar moved on to the Questions and Answers session.  There were so many good questions for the speakers and regrettably not enough time to answer them all.  We have listed the full set of questions here.


What are the plus points relating to how data has been managed during the pandemic?

Natalie: For me, all the barriers and challenges are largely not technological.  It’s not because we lack the expertise, it’s cultural – not having a wide enough view of the many different moving parts in the regulation and management of data use. Now people are pulling in the right direction, much is happening very rapidly.

If you create a unified mission, a lot of these barriers can fall away quickly – i.e. technology.  You can do things quickly and effectively once people are pulling in the right direction.  That, for me, will stay longer-term.


What are the good things we think we want to desperately keep hold of from a data perspective?

Paul: There seems to be a very large amount of patient impact on organisational behaviour.  We need to acknowledge that the patient voice in the UK is powerful, it needs to be put where it belongs, and we need to continue to pressurise the organisations we’re involved with to continue to do so.


Given where we are now, what needs to change and improve to make sure we don’t lose the benefits we have?

James: The patient public voice needs to be industrialised; it needs to be in the machine in such a way that it has an impact and can be used.  The great majority of larger organisations will have a communications team that look at everything that’s being done, and why is there not a similarly scaled and run patient team?  You should do nothing without the understanding and governance of patients.

Paul: We need to have a more fluid and more connected infrastructure, which has been an ambition for some time.  There is a degree of balance to be achieved between localised and regionalised networks and national networks.  While there is a need for patient infrastructure which can be called upon, we have a competent and committed patient committee responding to COVID-19.  We are patients and the extent at which we have knowledge is a mixed community – and we need to bring in the entire community to comment on these important questions.

Natalie: It’s a challenging one to get right; the language that we use matters hugely.  One of the critical things is there’s not a single right answer – and that’s okay.  We’re not going to generate consensus all the time.  My perspective is we need to try and industrialise but not institutionalise it. You need to retain that independence, rather than becoming too institutionalised, because then you risk being a tick box, rather than being meaningfully engaged throughout the process of data use and research.


Is the confidential patient information only allowed to be used for patient research?

Natalie: The control of patient regulations is specific that, for the purpose of managing the pandemic it has to be specific to the management of that pandemic.  


In terms of public trust in commercial use of data - NHSX and the Office for Life Sciences (OLS) were working on a commercial framework for the NHSX Centre for Expertise. Will something such as this be fast-tracked to ensure long-term safe use of patient data?

Natalie: It’s all the more important to get that set up and get it set up well in the context of the current crisis. It’s something we’re conscious of and we’re looking out for any progress, but no word yet.


COVID-19 is likely to infect 95% of the population if unchecked and will kill 2% at current rates.  Cancer will affect 50% of the population (over a much longer period) and will kill half of those (eventually).  Why do we delay and stall so much about using cancer data?

James: It has long been to my great sadness that we’re unable to help cancer patients in the UK with real-time comprehensive information about how other people are being managed and how their outcomes are being affected by the choices they make. COVID-19 has shown this is possible technically; we’re much closer to be able to have a go at doing this.  People are more understanding that the benefits and risks are worth taking the small risks.

Paul: We need to democratize the research beyond cancer to other diseases as well.  So, we need to use this platform to say we want more infrastructures in place in real-time, and we want it more broadly than that.

Natalie: The public narrative can be censored around risk and providing assurances; very rarely is it more positively framed, as in there are some real benefits and potential to do great work. People assume ‘people wouldn’t want that; the public wouldn’t accept that.’  That to me highlights why it’s important to have a patient voice, but the practicalities are so tricky.  Data must be approached from the patients’ perspective – i.e. the things that matter to them.  It needs to be framed on the expectation that this is done better, not the frame of getting it wrong.


3.7million plus patients are contributing to the Kings College / Zoe COVID-19 symptom study.  Does this show that patients are prepared, for good reason, to share their personal health data (albeit a restricted set of data)?

Paul: It’s understanding that matters.  There are concerns about the broader risks, but if a symptom app is able to operate at an earlier point so that therapies could have been delivered earlier to a vulnerable, at risk group, and saves lives, why on earth would I not be adopting that technology?


Has COVID-19 begun to surface some of the problems surrounding poor quality data?

James: Yes, absolutely there is a problem with data quality, and to realise the benefits you need to fix the data quality.  The only way to do that is to access the data.  There is also an issue of misuse of data, as highlighted by Paul.  We need to tackle both of these issues.   

Natalie: To add another layer of complexity - we need to recognise, from the outset, that data is not neutral.  What we collect is all laden with values, interests and motivations; we can’t pretend it’s somehow objective.  That feeds into thinking about what is missing, what’s collected, what’s counted.  What we’ve seen from the lack of so much data on social care tells us this.  Even before we get to the stage of analysing data and seeing whether we have the right data or not, we need to look at what is collected in the first place and what might be missed.

Chris: That takes us back to one of the comments from the start – the key need for transparency.   Transparency of course underpins the ethos of everyone on the call.  A question that has come in, but which we don’t have time to address here – I’m absolutely committed to transparency, but how much transparency is useful?  


Final comments

There was consensus from all speakers that the changing use of data in response to COVID-19 has shown we are making progress in the way we manage and process patient data.

Notably, the response to COVID-19 has highlighted whether we need to remove the obstacles, created by confidentiality advisory committees and others.  use MY data should continue its engagement work to seek answers to those questions.

Chris brought the webinar to a close, with the key points:

“We really are in uncharted territory as regards data, but it’s pretty clear that significant progress actually has been made.”

We need to bring the patient voice into more conversations. We must ask: ‘What do we think as a society is worth keeping as a value, versus what we think the potential risks are likely to be?’

use MY data is keen to bring a strong and direct patient voice into all conversations about patient data.


Thank you

use MY data would like to thank all the delegates and speakers for their time and contributions.  Thank you to Beth Kitchen for her visual minutes and Lauren Holden for her copy writing.