Insights from Black & South Asian people on patient data

A multi-stage project to learn about the views and experiences of Black and South Asian people, and advocate for change.

Why this research?

Understanding Patient Data prioritised learning more about the views of Black and South Asian people when it comes to sharing health data because of the health disparities they experience, as mortality rates from Covid-19 starkly highlighted. 

Research into health outcomes during the pandemic also exposed the frequent gaps in patient health records on ethnicity, as well as on important clinical information and social determinants of health.  

Better research and planning to tackle health inequalities requires better health data. And we can’t expect better data without listening to the experiences, expectations and concerns of the people who provide that data in the first place.   

Part 1: engagement with Black & South Asian communities

We worked with ClearView Research who, through community research and focus groups, heard from Black and South Asian members of the public about their thoughts on health data collection and use. The findings are wide ranging and hard hitting. Themes that came through strongly include: 

  • Many Black and South Asian people have low levels of trust in the NHS and are concerned about how their data will be protected. 
  • They believe that data can be used to improve health outcomes in their communities, but they do not see this happening in reality. 
  • Indeed, these communities have had negative experiences of the healthcare system and fear that sharing their data will lead to racial discrimination and poorer health outcomes. 
  • The current ‘tick box’ options are inadequate when it comes to being asked for information on their race and ethnicity. 
  • People want to be informed about how their data is influencing research, design and planning of healthcare services; and have the opportunity to shape plans themselves.

In response to the findings, ClearView have called for: 

  • Resources and training for healthcare workers to support better conversations with Black and South Asian people about patient data and what it is used for. 
  • Research to find a more inclusive method to collect information on identity, including race and ethnicity. 
  • Health data to be used to improve representation in datasets and for research into conditions that disproportionately affect people from Black and South Asian backgrounds. 

The links

Part 2: public survey and engagement with health professionals

We worked with Liberating Knowledge on the next phase of this work. The team built on ClearView's research, complementing the public engagement with the perspective of health care professionals and a public survey that brings quantitative insight.

Public survey

Liberating Knowledge ran a public survey with over 3000 respondents. Again, people from a range of ethnic backgrounds were included in the research.

Much of what Liberating Knowledge found chimed with and expanded upon the engagement findings:

  • Respondents from all ethnic groups were willing to share most types of personal data with the NHS. 
  • Only 3% of survey respondents said they didn’t trust the NHS with their personal data. 
  • However the survey also revealed that Black and South Asian people have greater concern for the potential for discrimination as a result of sharing their data. At the same time, 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 much 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.

Engagement with healthcare professionals 

Healthcare staff from Black, South Asian and White ethnic backgrounds working at a range of levels within the NHS told Liberating Knowledge that:

  • They have good understanding of the breadth of data collected by the NHS, although felt less confident describing why data is collected or how data is used where they are not responsible for using data in their role.
  • Resource and time pressures impact on 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. 

Staff from minoritised ethnic groups were more likely to understand the importance of being represented in data to support efforts to tackle health inequalities. Some staff didn’t recognise this importance and saw health inequalities by ethnicity as having a biological basis rather than the structural inequalities of healthcare systems and wider society. 

Recommendations

Liberating Knowledge have set out recommendations for decision-makers and frontline staff to make progress towards closing the data gap for Black and South Asian communities. These include:

  • Create the conditions for systemic change, including developing the cultural and racial capability of the workforce. 
  • 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 ‘hard to reach’ 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 equalities work, that has been driven by data insights, with the community, healthcare workers and the wider professional and scientific community.  
  • Embed an antiracist approach to data collection, analysis, dissemination and use, and enable staff to apply an equity/social justice lens to their work.

The links

Resources

Ultimately, we want these findings to support real change on the ground.  So, Liberating Knowledge have developed two practical resources:

Please do use these guides in your own work and share them with colleagues. We are also sharing them widely among community, professional and policy networks, with the aim of them being taken up at all levels and contributing to urgently needed improvements.