Our health data can make a real difference but we need to trust those that use it

Medics, ministers, and the media all have a role to play in cutting through the noise surrounding privacy, so that data can be accessed responsibly to tackle underlying health problems, writes Gemserv’s Head of Health.

There has been a very public battle between secure data access and public trust and engagement. While Government and the NHS are working hard to “level-up” health care via digitisation, obscurity in government policies, social media channels and campaigns have planted seeds of anxiety and mistrust in the general public. From misinformation about how the virus is spread to theories about the vaccines, now, as track and trace apps and vaccine certificates fall under the spotlight, public concerns about data and privacy are on the rise.

NHS App benefits and hurdles

In England, the upgrade of Covid-19 vaccine status attracted an additional 1.3 million users to sign-up to the NHS Track and Trace app, swelling its total number of registered users to 4.8 million. That surge in interest, has brought other benefits for the health service, with 90,000 people saving clinicians’ time by ordering repeat prescriptions through the app, and more than 11,000 registering to donate their organs.

However, the rush to download the app has also highlighted technical “back-end” challenges as people have been unable to register.

“Getting the technical aspects right behind the scenes is key to instilling public confidence, not only in the app, but in the wider digitisation of healthcare.”

A long-standing public discussion has also fruited from the NHS app. Many campaigns claim that data collected by the NHS would be sold to marketing and insurance companies or used to track vaccinated people. Although NHS Digital defended the claims with a “myth-buster” response, a large sector of the public remain unconvinced.

So, why is secure data access important?

It’s right and proper that citizens ask questions about how their data will be used – ultimately, we own our own data.

It is, therefore, crucial that all members of the public are clear, aware and have trust in how their data will be handled – now and in the future.

It is also essential to keep sight of the potential that data can unlock when handled in a secure and sensitive manner. During the pandemic, data managed by NHS Digital was essential in not only developing the treatments to tackle Covid-19 but also in the vaccines that will help the manage the coronavirus.

Beyond the pandemic, wider public support for sharing health records will help to “level-up” healthcare. By analysing this granular, GP-level data, it’s possible to spot the underlying health conditions that drive higher death rates, including from Covid-19. Mapping those findings alongside data about poverty and housing then allows governments to shape policies that tackle both poor health and the social and economic problems that often trigger it.

However, a crucial question remains – how can we work together to keep data security at its highest and ensure the public are actively engaged and informed?

How can we work together to overcome data hurdles?

Building public trust through, active public engagement, transparent communication and robust technical delivery must be a priority moving forward.

Although NHS Digital reiterated that it had introduced a national data opt-out in 2018 – and that information is still available on its website and in leaflets at doctors’ surgeries, a more proactive approach should be taken. For example, NHS digital must ensure to provide the public with a clear, transparent “one-version-of-truth” on data policies, scope of apps and data collection processes. Both Government and the NHS should also use the bloom of social media platforms to their advantage and reach the public to positively promote secure data collection and information sharing.

The teams at NHSD and NHSX should actively seek feedback to foster public confidence in the wider digitisation of healthcare whilst ironing out the technical “back-end” challenges of NHS apps.

Although Government faces most criticism, responsibility of the public towards secure data processes must not be overlooked. We should actively seek information, frequently share feedback and concerns, and raise awareness among peers. We should work together to unlock the true potential that secure data brings to preventing and improving our health.