Technology could help address ethnic inequality – but better collection of data is needed, report finds

Credit: Ylanite Koppens/Pixabay

An NHS-backed body has flagged up the “powerful role” apps and digital platforms could play in the coming years in tackling health inequalities caused by ethnicity and race.

However, the NHS Race and Health Observatory has advised that, to make good on this potential, a system-wide reform is needed in how data is collected and used to support improvements in care and – ultimately – outcomes.

The observatory’s newly published Digital apps and reducing ethnic health inequalities report finds that tackling health inequalities arising from ethnicity “requires a comprehensive and systemic NHS response”. 

The research says that, while digital could represent a “powerful driving force” in delivering this response, it is “impossible [and] reductive” to look at the use of technology in isolation.

Better and more consistent collection of information – particularly in how people’s ethnicity is recorded in data sets – is essential to enabling apps and online services to help address disparities in care. Digital teams, meanwhile, should have an “explicit remit to work towards dismantling inequality”, the report says, and “continued NHS investment and commitment is also required”.

The study, which was conducted by digital consultancy TPXimpact, examined the use of two apps – the core NHS App and NHS Blood and Transplant’s (NHSBT) Give Blood app – by ethnic minority users. Research participants indicated that they were “open to sharing personal data with the NHS – as long as it led to tangible health benefits for themselves and their communities, and if clear boundaries were established around how data would be used, protected, and shared onwards”.

Despite this willingness to share data, digital and policy teams often currently lack the ability to access or analyse information that could help elucidate “where ethnic health inequality exists”.

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The report adds: “For the NHS App team, demographic and healthcare data collected and recorded in general practice systems are inaccessible, due to strict controls over how data is used and shared. Though NHSBT collects personal data through pulse surveys, the Give Blood app team currently lacks the data infrastructure, setup, and capacity to rapidly and routinely analyse data for action. Going forward, it is important that the NHS leadership invests in establishing the right processes, training, and cultural change internally around data to build compliance, accountability, and trust.”

The study’s first recommendation is that the “next generation of apps” created by NHS bodies should be designed from the outset in a way that is “explicitly geared towards working with Black and minority ethnic communities to shape and deliver more equitable services”.

It is further recommended that the teams delivering apps and digital services must have access to “linked data cutting across demographics, clinical outcomes, and digital behaviours to actively shape and deliver impactful services that reduce health inequality”.

Both delivery teams and senior managers must also be “empowered and have the right conditions in place to work towards collectively reducing ethnic health inequalities”, the report says.

‘Lack of co-ordination’
NHS Race and Health Observatory senior implementation lead Owen Chinembiri said: “One of the biggest barriers preventing NHS leaders in prioritising digital interventions and addressing inequalities is the lack of accessibility and data linking clinical outcomes, demographics and access to patient’s online behaviours. We need better data collection and processing to ensure a focus on where interventions are needed most to target health inequalities.”

He added: “This lack of co-ordination linking health services with conditions, ethnicity and how people from diverse backgrounds use digital resources, means better insight into health inequalities being overlooked. With the right design, online digital apps can help the health system get to grips with tackling the underlying causes of health inequalities.”

According to the observatory – an independent research and advisory body established and funded by NHS England – the health service requires a daily total of 250 daily blood donations in order to effectively treat blood conditions such as sickle cell disease, which is most prevalent among those of Black African or Black Caribbean heritage. To best treat these patients, more donors of Black heritage are required, the research concluded.

NHS Blood and Transplant “welcomes these findings ”, according to David Rose, director of donor experience and communications, who added that the study “reiterates that we are going in the right direction by investing in our people’s digital skills, building more sophisticated data capturing and analysis tools, and the user functionality of the Give Blood app”.

“Tackling health inequalities through donation is at the heart of what we do, and we must get better at using data from our apps and donor databases relating to Black, Asian and ethnic minority users to improve their experience with us and keep them inspired and motivated to donate regularly,” he said.  “The report rightly recognises that digital apps like Give Blood have huge potential for tackling health inequalities and we will continue our efforts to collaborate and share more appropriate digital-led insight with the wider NHS to help improve patient outcomes.”