In the face of grave health inequalities and gaps in patient health records, decision-makers need to reflect on the views and needs of minoritised communities. Unless sincere action is taken to collaborate with less-engaged or data-suspicious groups, we will continue to see the inverse care law extend into health data representation.
Not taking action has profound knock-on consequences for everything from equitable healthcare provision to personalised medicine and next-gen drug discovery.
Our team supported Liberating Knowledge in a Wellcome Trust funded research with over 3,000 respondents and published findings in: What it means to be seen: Closing gaps in patient data for Black and South Asian communities. Whilst the report and research findings aren’t light or easy to read, it demands our attention.
Perception of how data is being used
Many Black and South Asian people believe that data can be used to improve health outcomes in their communities, but they do not see this happening in reality. What they want is to be informed about how their data is influencing research, design and planning of healthcare services and have the opportunity to shape plans themselves.
Healthcare staff from minoritised ethnic groups are more likely to understand the importance of being represented in data to support efforts to tackle health inequalities. Not all staff recognise this importance and see health inequalities by ethnicity as having a biological basis rather than the structural inequalities of healthcare systems and wider society.
Dispelling the myths
The research insights will help begin to dispel myths and think about practical actions to move forward by sharing unique insights.
What respondents from the ethnic groups said:
- All were willing to share most types of personal data with the NHS.
- Only 3% said they didn’t trust the NHS with their data.
- Black and South Asian people have greater concern for the potential for discrimination because of sharing their data. They are also more likely to believe that incomplete data will impact their care as compared to people who are White.
- Only 1 in 5 respondents reported having a conversation with a healthcare worker about how patient data is used, showing the need for greater engagement by the NHS with the public regarding its collection and use.
- Where people had had conversations with NHS staff, there was a significant impact on increased willingness to share personal data and a broader understanding of the use of patient data including the benefits.
Challenges that healthcare staff are facing:
- Feeling less confident describing why data is collected or how data is used when they are not responsible for using data in their role.
- Resource and time pressures impact their ability to prioritise collecting patient data and have conversations with patients about it.
- The lack of people in leadership roles who are committed to tackling institutional racism and health inequalities is a barrier to collecting patient data.
- Black and South Asian patients have expressed concern to them about whether they can trust the NHS given past harms.
Actions to move forward
Decision-makers need to aim for a future where communities and individuals are thoughtfully involved in shaping planning and research that uses patient data, in a way that works for them.
So, what can decision-makers do to involve all communities?
Here are the thoughts from the participants:
- Create the conditions for systemic change, including developing the workforce cultural and racial capability
- Secure the support and commitment of senior leaders to improve data practices, embed inequalities work and create space for staff to innovate within the NHS
- Actively challenge narratives: that encourage the perception that Black, South Asian and minoritised communities are hard to reach or unwilling to share their patient data
- Equip healthcare workers with the tools to hold meaningful conversations about data
- Regularly share the learning from data insights driven equalities work with the community, healthcare workers and the professional and scientific community
- Embed an antiracist approach to data collection, analysis, dissemination and use, and enable staff to apply an equity and social justice lens to their work
Access tools to equip the workforce
Liberating Knowledge has developed A short guide for healthcare workers to refer to in their daily work, so they feel more equipped to have conversations with patients about health data use and collection. A more comprehensive guide aimed at healthcare leaders and policy professionals shares recommendations on how to lead from the top on better data collection and tackling health inequalities.
We are working with the NHS Confederation in partnership with the Nursing and Midwifery Council and NHS England to create the conditions for systemic change, including developing the cultural and racial capability of the workforce. The Combatting racial discrimination against ethnic minority nurses, midwives, and nursing associates resource is live and being co-produced with the readers and NHS staff.