Analysis of NHS data has found a lack of co-ordination is limiting insight into how online healthcare services and apps are used by ethnicity and to tackle health inequalities.
A new report published today by the NHS Race and Health Observatory reviews how information gleaned from users of online health tools is used by health providers to analyse and improve patient health.
In January 2022, the independent health body commissioned TPXimpact to undertake research on the use of digital applications provided across the healthcare system. The report – Digital apps and reducing ethnic health inequalities – outlines a series of recommendations for the national NHS leaders and providers.
Designed primarily to measure variation in use and experience of online apps, by ethnicity, the review also identifies how digital data can be used in future to improve patient access and outcomes, and address health inequalities.
Whilst measurable data to review how people of Black and ethnic minority heritage use and experience healthcare apps were scarce, the COVID-19 pandemic has heightened ethnic health inequalities and driven a spike in the use of digital tools and remote online care.
The review also found digital and apps teams, employed by the NHS, face a number of barriers and limitations preventing insight and the linking of gaps across health services, conditions, digital usage and wider ethnic health inequalities.
TPXimpact Design Lead, Megha Wadhawan, said:
“While ethnic health inequalities are a result of several factors, the NHS has a critical role in mitigating and reducing these. At the same time, there is a shift in how we use NHS services – with the prominence of digital services and apps only set to grow. This report is a timely and important piece of work that unpacks digital’s powerful role while highlighting the wider systemic changes needed to better enable digital and healthcare teams to work towards reducing ethnic health inequalities.”
Due to the limitations of available data, researchers focused the review on lessons learned from insight into two case studies: the NHS Blood and Transplant’s (NHSBT’s) ‘Give Blood’ App and the mainstream NHS App.
According to recent figures, the NHS App has now reached over 30 million sign-ups so it’s vital the collected data is also used to help close health inequality gaps.
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.
“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.”
The NHS now 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 and some sickle cell patients don’t always get the best matched blood.
Director of Donor Experience and Communications at NHSBT, and member of the Observatory’s Digital and Data Advisory group, David Rose, said:
“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.
“We welcome these findings, which reiterate 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.
“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.”
Across both healthcare Apps, delivery of digitalising existing healthcare services and content was clearly evidenced, but without a clear policy remit to tackle systemic health inequalities.
A mixed methods approach was adopted with input via a literature review, IT experts, stakeholder health providers, digital and app teams and focus groups conducted with people of Black and South Asian backgrounds. Feedback from focus groups revealed people of Black and ethnic minority backgrounds are open to sharing personal data with the NHS, given the health benefits both for themselves and their communities.
Whilst several concerns remain on whether digitalisation could widen existing health inequalities – figures from the government and Office of National Statistics show ethnic minority communities are more frequent users of the internet and mobile phones compared to national averages.
Authors found key barriers facing analysts within NHS digital and apps teams, is their lack of access to data, resources and capacity to target and analyse where ethnic health inequality exists.
Within GP practices, demographics on healthcare data are often inaccessible due to strict data sharing rules. Additionally, personal data, collected though NHSBT data teams via donor surveys and the Give Blood App, lack the infrastructure setup and capacity to fully analyse and action shortfalls in data collection, rapidly and routinely.
Whilst teams in NHS Digital were able to bridge aspects of digital and healthcare delivery by working in an integrated way with clinical teams – this was not standard practice across other digital teams.
Authors now call for an explicit reform in how the NHS and NHSBT rebuild, collect and use data to guide policy decisions, particularly around ethnicity coding and health inequalities. Nationally, NHS leaders need to design services that intentionally reduce inequalities, with a clear role and remit for digital teams.
Key recommendations for ‘Design’, ‘Data’ and ‘Ways of Working’ include:
- Design of new data strategies must engage with the public and with members of Black, Asian and ethnic minority communities, to co-design data policies based around community needs.
- Digital teams to work with local NHS GP practices and commissioning groups, frontline staff, and community partners to identify new ways to serve the unique and unmet needs of ethnic minority communities.
- With better linked data, NHSE, UKHSA, ICSs, researchers and digital teams should use insight to design by targeted research and design efforts in areas where ethnic health disparities need priority attention.
- National healthcare organisations to pilot, implement and update guidelines and processes on ethnicity data coding in the NHS.
- NHS England and NHS Blood and Transplant should partner with the NHS Race and Health Observatory to co-design data privacy guidelines with people of Black and minority ethnic backgrounds, ensuring clarity and building trust in data collection and use.
TPXimpact, Managing Partner, Health, Iain O’Neil, added:
“This is difficult but vital work. To make the important changes needed to tackle inequalities we must first recognise that there are issues and begin to make choices that support our aims of reducing them. This was never meant to be an exercise in apportioning blame but rather a way to identify some of the drivers and to empower teams across the NHS and beyond to begin to tackle them – collectively.”