Reform patient data collection and handling to minimise health inequalities, say experts in new report

Health experts are calling for reforms as a lack of trust in how data is collected and used is making it harder to match sickle cell patients of Black heritage with blood, despite more people donating.

Measurable data to review how people of Black and ethnic minority heritage use and experience health care apps were scarce, and the COVID-19 pandemic has heightened inequalities, according to a new report.

Digital and apps teams employed by the NHS face barriers and limitations, the report found, which prevents insight into how patients of all ethnicities use them. This is despite a rise in the use of digital tools and remote online care driven by the pandemic.

“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,” said Owen Chinembiri, a Senior Implementation Lead at NHS Race and Health Observatory.

He added that health services should be designed to tackle health inequalities.

He said: “The design and research effort for healthcare apps needs to be explicitly geared towards working with Black and minority ethnic communities to shape and deliver more equitable services.”

Teams need to have linked data which can cut across demographics, clinical outcomes, and digital behaviours to tailor services to the needs of patients, he told the Standard.

The NHS needs a record 250 blood donations every day to treat blood conditions such as sickle cell disease, which is more prevalent in people of Black Caribbean and Black African heritage.

Blood donors of Black Caribbean and Black African heritage are more likely to have the matching blood types that sickle cell patients require. While more people of Black heritage are donating, there are currently not enough donors, and some sickle cell patients don’t always get the best matched blood.

The report found that people were more likely to share personal data with the NHS if they knew how it benefited them, and there were rigid boundaries protecting it.

Whilst there are concerns on whether digitalisation could widen existing health inequalities, figures published by the Office of National Statistics in 2018 indicated that internet non-users in ethnic minority communities were lower compared to the national average.