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TPXimpact was commissioned by the NHS Race & Health Observatory to deliver research that can shape future digital health recommendations to reduce ethnic inequality in the usage of healthcare apps such as the NHS App. As health inequalities are shaped by wider determinants of health, addressing them requires a response beyond digital and even beyond the NHS. This report focuses on the role digital can play in understanding and addressing ethnic health inequalities.
This review into the relationship between digital and ethnic health inequalities has revealed inequality as a complex, legacy driven, and institutional phenomenon. As there are many factors that contribute to inequalities outside health and outside the NHS, we found it impossible, but also reductive, to suggest isolated digital responses to this systemic problem – especially as digital alone cannot address systemic inequality. Addressing ethnic health inequality requires a comprehensive and systemic NHS response, of which digital can be one powerful driving force.
While there is growing public awareness of racism and ethnic discrimination issues across government, policing, and healthcare, receiving healthcare is a very individual and often isolated experience. Black, Asian, and minority ethnic community members often do not know whether they are receiving an equal quality of care. Only with quality quantitative data can the NHS understand the extent of the problem, and where and how it can shape interventions. A reform in how the NHS and NHSBT collects and uses data to guide decisions, especially with ethnicity coding, is needed to achieve better health outcomes for all.
While some of the recommendations made in this report can be implemented by delivery teams today, many of the required actions sit outside the existing remit of the NHS and NHSBT App teams. As such, our report focuses on setting out challenges for national NHS leadership, including organisations such as NHSBT, NHSE, and NHSD. We argue that digital and app teams need to have an explicit remit to work towards dismantling inequality, by firstly helping to rebuild and strengthen community trust through equitable approaches. Recognising the value that digital services have already delivered, and can potentially still deliver, for public health, we call for continued NHS investment and commitment in this area to get it right.
Design recommendations: The design and research effort for healthcare apps needs to explicitly be geared towards working with Black and minority ethnic communities to shape and deliver more equitable services
- Review well known frameworks such as the NHS design principles that often underpin the design and development of NHS, NHSBT and other healthcare apps, to refocus what future best practice looks like for teams actively working to address systemic inequalities.
- Target design research to identify barriers preventing ethnic minority communities from benefiting from current apps, ideating new solutions that would help mitigate the potential negative impacts of digitalisation
- Digital teams should work closely 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 minority ethnic communities.
- With better linked data, NHSE, UKHSA, ICSs, researchers and digital teams should use data to design by targeting research and design efforts on areas where ethnic health disparities need most attention. This will also identify additional benefits and purposes for digital tools.
Data recommendations: Digital and App teams need to have linked data cutting across demographics, clinical outcomes, and digital behaviours to actively shape and deliver impactful services that reduce health inequality
- Where possible, collect, analyse, and use data on ethnicity, digital behaviours, and health outcomes. Where not possible, identify barriers and explore opportunities for how these can be overcome.
- Better communicate to ethnic communities how data and digital tools deliver health benefits.
- Clearly communicate hard boundaries around issues people are most concerned about, with all users – e.g. sharing identifiable data with the government.
- Identify ways to design better feedback loops into digital services so users benefit from using and sharing data with apps.
- Invest resources to build out data infrastructure and in-house data analytic capabilities.
- NHSBT, NHSE Transformation, and NHS Digital should define and enforce new standards and best practices for internal data collection and sharing, so that linked data on health and ethnicity can be accessed to understand challenges and make service improvements This could be part of existing initiatives such as the development of General Practice Data for Planning and Research (GPDPR).
- NHSE and NHSBT should partner with NHS RHO to co-design data privacy guidelines with black and minority ethnic communities, ensuring clarity as well as building trust in how data would be collected and used.
- The Department for Health and Social Care, NHS England, and NHS Digital need to work together to define and enforce standards and a culture of compliance and ethics around data across all levels, which includes:
- Ensuring that wider primary care services including GP practices, hospitals and commissioning groups collect ethnicity data consistently.
- Ensuring that data is stored and shared in open, consistent and secure ways.
- Investing in upskilling all levels of NHS and NHSBT staff involved in patient facing delivery of health services, on data literacy and ethical data-decision making.
- The Health Inequalities Improvement Programme at NHSE, NHSBT, and NHS Digital should work with the NHS Race and Health Observatory to pilot and implement updated guidelines and processes for ethnicity coding in the NHS.
- The accountability for collecting and ensuring patient ethnicity data in the NHS and NHSBT should be clarified, following guidance from the Nuffield Trust, as part of the ‘Ethnicity coding in English health service datasets’ report (2021) .7 As part of their new remit to implement a population health platform, Integrated Care Systems (ICSs) can hold the accountability for collecting more consistent primary services data at the local level and be accountable for enforcing data standards for such.
Ways of working recommendations: Ensuring that delivery and leadership teams are empowered and have the right conditions in place to work towards collectively reducing ethnic health inequalities.
- Build ethnically diverse digital teams
- Invest in training that deconstructs racism, introduces anti-racist and inclusive practices. This training should lead to implementation of anti-racist practices, giving delivery teams shared frameworks to work from.
- Digital teams should partner with stakeholders, commissioners, and other organisations to identify how digital can be part of collective place-based goals to address local challenges, reduce ethnic disparities in health, and monitor outcomes
- Ensure ethnic diversity in the NHS leadership nationally, including in organisations such as NHSBT, NHSE, and NHSD, to signal a clear commitment to address systemic racism.
- National NHS leadership including organisations such as NHSBT, NHSE, and NHSD should promote a culture of cross-disciplinary learning, sharing, and improvement. National NHS leadership should proactively invest in digital transformation in ways that ensure inequality is intentionally addressed.
- NHS leadership should consider new service ownership models that enable app and digital teams to work more closely with service owners and other teams to use data to understand and test new solutions along the user journey. Clear accountability along with multidisciplinary, collaborative ways of working will lead to more joined up experience for patients and better understanding of health outcomes
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