Brits more comfortable sharing data with pharma since COVID-19 – survey

New research from MHP Health and ComRes looks at what impacts COVID-19 has had on the public’s health data sharing concerns, and asks how the industry can maintain confidence in data usage after the pandemic.

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 the pharmaceutical and diagnostic industries and technology companies, is a contentious area. 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 data-sharing, like Care.data, failed. Therefore, the Government’s approach to requiring data-sharing during the pandemic inevitably raises questions about privacy and personal choice.

With this in mind, MHP Health worked with ComRes to poll 2,072 members of the public to better understand their comfort with sharing their health data and to investigate if this has changed since the outbreak of the pandemic.

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

As the pharmaceutical and diagnostics industries continue to step up to the mark in the race to tackle COVID-19, 26% of people said that they are more comfortable sharing their health data with the pharmaceutical industry and 25% with diagnostic companies since the outbreak of COVID-19.

Just one quarter (25%) of people surveyed said that they would be uncomfortable sharing their health data with the pharmaceutical industry and only 23% said the same about diagnostics companies. The only organisation, out of the options we tested, where people reported lower levels of being uncomfortable in sharing their health data was with NHS bodies (16%). Given previous high levels of mistrust of the pharmaceutical industry this is a positive step forward.

Going some way to explain this may be that the majority of people (57%) said that they are comfortable or very comfortable sharing their health data for the purpose of developing new treatments and vaccines. This was the second highest rating of the options we tested, behind ‘Improving NHS structures and services’ – 59% of people were comfortable with their health data being shared for this purpose. The support for health data sharing for the purpose of developing new treatments and vaccines suggests that if a clear medical and societal case can be made for its use, the public is more comfortable sharing their health data.

The pharmaceutical and diagnostics industries have always existed to help patients. These industries can now demonstrate that they are leading society out of the pandemic. Focusing on why work is being done, as well as what work is being done is a core part of demonstrating purpose. Social value and purpose should be at the heart of pharmaceutical and diagnostic company communications to increase public confidence that their data are being used for the greater good and to build trust.

The charity sector was second on the list of organisations the public feel uncomfortable sharing their health data with

Almost one third of people (31%) said that they would feel uncomfortable sharing their data with the charity sector, out of all the options tested. This was second only to ‘big technology companies’ (38%). This finding aligns with previous polling commissioned by KPMG in 2018 which found that, in a survey of 2,000 people in Britain, only 11% said that they were willing to share their personal data with charities.^[1]

Our survey did not break down the charity group to specifically focus on medical, health and research charities, so one possible reason for people being uncomfortable sharing their health data may be that they are not clear what charities would do with their health data. It is therefore possible that there may be a concern that this data would be used to make fundraising requests as opposed to playing a role in furthering research efforts that will lead to new treatments or supporting patients’ healthcare needs. For the people who feel less comfortable now, this may be a consequence of the economic backdrop of reduced incomes and job losses.

We know that COVID has had a huge impact on the charity sector itself. As reported by the Institute for Fundraising in June this year, 47% of charities surveyed (all charities, not specifically health or medical charities) reported an increase in demand for their services since the outbreak of COVID-19, but voluntary income on average is expected to fall by 42% per charity.

To turn the tide and ride a wave of positive sentiment, charities should consider using this period to re-assert their purpose and talk passionately and succinctly about the services they provide, the benefits of the medical research they conduct, and their wider role in the 'health ecosystem'.

Developing digital tools and apps for patient support was the second least popular purpose for sharing health data

Given the strains on the charity sector there is a strong case for innovation in patient support. However, less than half (46%) of people were comfortable sharing their health data for the purpose of ‘developing digital tools and apps for patient support’, and more than one in five people (22%) said they were uncomfortable with their health data being used for this purpose. This purpose had the second highest amount of people saying they are uncomfortable, with ‘Informing the Government’s lockdown strategy’ the only area where people reported higher levels of being uncomfortable. It would be useful to pose this question to patients rather than the general public to see if the response differs and to determine if there are any condition areas where attitudes diverge significantly, either positively or negatively.

The insight we do have could be useful when considering ‘beyond the pill’ initiatives. Communicating how patient data is used to power patient support apps and how data collected in apps is controlled and used appropriately is key to building trust in digital tools.

Addressing the public’s health data-sharing doubts

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 vaccines, diagnostics and treatments.

About the author

Rachel Rowson is head of health innovation at ENGINE MHP.

^[1] This survey did not specify health data, but used the broader term ‘personal data’