Thought Leadership

To share or not to share – what impact has COVID-19 had on the public’s health data-sharing concerns?

Will data sharing be the next ‘new normal’?

To share or not to share

In April, at the beginning of the COVID crisis, the Health Secretary Matt Hancock issued a six-month order for the NHS to share confidential patient data. Under Health Service Control of Patient Information Regulations, the Secretary of State issued four emergency notifications which inform GP surgeries, local councils, executive agencies of the DHSC, and any other “organisations providing health services” throughout England that, until 30 September, they are required to “process confidential patient information… to support the secretary of state’s response to COVID-19”.

This effectively clears the way for the sharing of patient data with any relevant organisation, providing the purpose of doing so is solely for “research, protecting public health, providing healthcare services to the public and monitoring and managing the COVID-19 outbreak and incidents of exposure”. These notifications were put in place to support initiatives including the Test and Trace app, discovery and development of a COVID vaccine, and managing the capacity of ventilators and critical care beds.

The use of personal health data by the Government and NHS, not to mention big tech companies and other private companies, is a contentious area. Health data-sharing is problematic because datasets are not collected in a standard way, making it difficult to link data together, and crucially (under normal circumstances) people need to give their permission before their data can be shared between different parts of the NHS, and with other organisations. Previous attempts to have a national conversation about health datasharing, like Care.data, failed. Therefore, the Government’s approach to requiring data sharing during the pandemic inevitably raises questions about privacy and personal choice.

The health and care system is facing an unprecedented challenge and we want to ensure that health organisations, arm’s length bodies and local authorities are able to process and share the data they need to respond to coronavirus… For patients, this means that their data may be shared with organisations involved in the response to coronavirus.

Matt Hancock, Secretary of State for Health

Introduction to the research

MHP worked with Savanta ComRes to survey 2,072 UK adults aged 18+ between 19 and 21 June 2020. Data is weighted to be nationally representative of all UK adults by age, gender, region and social grade. We asked the following three questions:

 

Q1. How comfortable or not are you with sharing your health data with each of these bodies since the outbreak of COVID-19? NHS bodies, government, pharmaceutical industry, diagnostic companies (i.e. that manufacture devices used to detect or analyse diseases), big technology companies, health technology start-ups, academic institutions, charity sector

Q2. How, if at all, has your opinion changed on sharing your health data with each of these bodies, compared to before the COVID-19 outbreak?

Q3. How comfortable or not are you with your health data being shared with health sector organisations for each of the purposes below? Developing new treatments or vaccines, developing digital tools and apps for patient support, clinical research, informing the Government’s lockdown strategy, improving NHS structures and services

 

The findings represent a small sample of the UK population, but their answers give us a glimpse into the public’s changing health data-sharing views.

Headline insights

Our research indicated five key insights, click here to read the full analysis of our findings.

 

People feel most uncomfortable sharing their data with ‘big technology companies’

 

The charity sector was second on the list of organisations the public feel uncomfortable sharing their data with. And developing digital tools and apps for patient support was the second least popular purpose for sharing health data

 

But the public are coming around to the value in sharing their data with the pharmaceutical and diagnostics industries

 

The pandemic means more people are now happy for their data to be shared within the NHS

 

But people still don’t trust the government with their data

 

 

Concluding thoughts

There is a critical communications job that needs to be done in winning the hearts and minds of the public regarding the benefit of their health data being used to inform health strategies. The National Data Guardian conducted polling on public attitudes to organisations innovating with NHS data and concluded that “supporting and extending this public conversation [on how benefits from patient data can be shared to the benefit of the NHS] is crucial if we are to gain from the rich information held safely in the health and care system and retain public trust.”

Organisations like the pharmaceutical and diagnostics industries need to be open and transparent about how data is used and build on the public interest in the development of tests, vaccines and treatments for COVID-19. This is a useful route in to a conversation about the value that sharing health data has in fast tracking patient access to diagnostics and treatments.

For technology companies who don’t necessarily work in medical ethics and research regulation exclusively, embracing the Department of Health and Social Care’s Code of conduct for data-driven health and care technology and communicating about how they are working within the principles could help to increase public understanding and confidence in using their health data. Being clear about the benefits of the work technology companies are doing in the health space to individuals, the NHS and society are important aspects of any discussion about private organisations having access to health data.

Finally, this research focused on what people think about sharing their data, but we were not able to dig into why people think this, although we have tried to draw appropriate conclusions about this. Understanding the drivers behind people’s views, especially where they have changed over time, is important in building any strategy to increase the public’s confidence in health data sharing.

To share or not to share

get in touch

We hope that this briefing provides useful insights. The content of this booklet represents the topline findings from our research. If you would like to go through the full results with the team then please do get in touch by emailing Rachel.Rowson@mhpc.com.