Back in 2021, we launched a project which involved engaging with Black and South Asian people on equitable data collection. Over time, we put out a number of news articles to keep you up-to-date with this work – as we make some edits to our News page, we wanted to bring the content of those articles together in one place. You can find our resource page for this project here.
There has been lots of research into what the public thinks about the collection and use of health data, including by us here at Understanding Patient Data. We’ve carried out surveys, held roundtables and organised citizens juries to find out what people think about health data being used by organisations outside the NHS. We’ve also worked with members of the public on the best words to use when discussing patient data and the best moments to have those conversations. All this research means we have good evidence about people's expectations, hopes and concerns when it comes to trustworthy use of data, and how to talk about data.
However, most of this research has been with the general public, using a nationally representative sample for the whole of the UK population. We’re missing evidence on how people’s views vary and potential demographic differences. It is crucial to develop a more granular understanding of what people from specific groups within the UK think about health data use because otherwise important issues might be missed. 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.
The Covid pandemic has seen poorer health outcomes for Black and South Asian people, drawing attention to existing health inequalities. It has also exposed the frequent gaps in patient health records on ethnicity, as well as on clinical information and social determinants of health, such as blood pressure and smoking status. As a result, there is now a policy focus on collecting more patient ethnicity data to deliver more equitable outcomes and vaccination coverage during the pandemic. This also has the potential to improve future health research and planning, for example, to address wider health inequalities and tailor services.
But it is unrealistic to expect lasting change without examining the reasons behind data inaccuracy and incompleteness for Black and South Asian people. These reasons are likely to include structural racism, lack of training, mistrust and the perception that data collection doesn't have a clear benefit. These issues—and how to address them—can only be meaningfully explored through public engagement, led by people with strong connections within Black and South Asian communities.
About the project
This was a multi-stage public engagement project to learn from members of the public and healthcare professionals about the barriers to health data collection, and to co-create resources to support improvement.
For the first stage, we looked for an organisation to work with us who had deep connections in the range of communities that we wanted to engage with, and who would plan and deliver public engagement:
- To explore Black and South Asian peoples’ views on health data collection and use: including why health records are often incomplete or incorrect and what aspects of data collection and use matter to them.
- To understand what it means to be represented: peoples’ perceptions of benefits or risks when it comes to being included or not included in health data collection.
- To learn about the questions, concerns and aspirations that people from Black and South Asian backgrounds have about the collection and use of data in their health records.
The plan was for the insights from this first phase of the project to shape the practical resources developed with Black and South Asian people and healthcare professionals in the second phase.
We received some very strong proposals and were pleased to end up collaborating with ClearView Research on this work. In our kick-off meeting, they talked us through their plans to elicit qualitative insights using a mix of peer research community interviews and focus group discussions with people around the UK. The peer researchers were to be recruited into paid roles and trained specifically for this project and would co-create the focus group sessions. They would also carry out their own interviews and analysis and ‘sense check’ the overall findings.
As well as working with ClearView, we took soundings from an advisory group that we set up, that provided us with a range of expert perspectives in this area. The group was made up of clinicians, service providers, researchers and campaigners. Collectively they performed a vital ‘critical friend’ role and challenged and supported us along the way. The members were:
- Hannah Atherton, Senior Insight Account Manager, NHS England, and Clare Enston, Head of Insight and Feedback, NHS England
- Owen Chinembiri, Senior Implementation Lead, NHS Race and Health Observatory
- Dharmi Kapadia, Lecturer in Sociology, Manchester University
- Mavis Machirori, Senior Researcher, Ada Lovelace Institute
- Rohini Mathur, Assistant Professor of Epidemiology, London School of Hygiene and Tropical Medicine
- Winston Morgan, Professor of Toxicology, Equity and Inclusive Practice, University of East London
- Parth Patel, research fellow at IPPR & UCL Institute of Health Information, junior doctor
- Peter Short, Clinical Lead GP Data for Planning and Research, NHS Digital.
- Dr Mohammed Sharif Razai, Academic Clinical Fellow in Primary Care and General Practitioner, St George’s, University of London.
“I’m comfortable with sharing my data... but I don’t know how much faith I have in the system or… how much it’s going to reach and make a difference to the people who are in most need.”
“Sometimes I am reluctant about disclosing my ethnicity and gender for obvious reasons like being seen as a Black woman, so I’m supposed to be “strong” even when I am unwell and clearly weak.”
“I actually see myself as a British Bangladeshi...So, you know, it’s quite strange when they don’t have the option of putting the British-Bangladeshi on there.”
These reflections from Black and South Asian members of the public were among the many rich insights gathered during our collaboration with ClearView Research. As the comments above demonstrate, ClearView’s findings were 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, ClearView 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 complete findings and all ClearView’s recommendations can be found in the full report. There is also a shorter, summary report available too. This video features the ClearView team, community researchers and research participants discussing the project and its findings.
Once we’d acquired a better understanding of people’s views, we wanted to work with members of the public and health care staff to cocreate ‘best practice’ resources for use by staff on the ground, to support better transparency about health data and why it’s used. It was important to us that we support open and honest conversations about data that give people the full picture, rather than seek to persuade. We could then share our findings and the resources with policy makers, NHS leaders and professional bodies so they can use them to improve health policy, practice and training.
Therefore, the second stage of this project involved commissioning a piece of qualitative engagement with healthcare staff who collect patient data. We wanted to hear what they think contributes to limited collection or poor-quality data, what good practice exists already and ideas for improvements. We also commissioned a quantitative survey with Black and South Asian members of the public to complement ClearView's engagement work.
This stage was delivered by Liberating Knowledge, a specialist research agency with deep connections to the professional and public communities we are engaging in this project. Liberating Knowledge built on the previous work, complementing the public engagement by:
- Engaging with healthcare staff who are responsible for collecting patient health data, to hear what they think contributes to limited collection or poor-quality data, what good practice does exist already and ideas for improvements.
- Conducting a survey with Black and South Asian members of the public to complement the qualitative engagement work and gain representative insights.
‘Data isn’t neutral and contributes to the systematic injustices we see in healthcare and wider society… Data shapes who is seen and who is invisible, whose needs are met, overlooked or ignored.' -- Natalie Creary, Liberating Knowledge
What healthcare workers told us
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.
What the public told us
We know from the engagement that ClearView Research conducted that:
- Many Black and South Asian people they spoke to 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
- They 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 order to compare ClearView Research’s qualitative engagement findings with the views and experiences of a larger number of people, 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
As their report says, ‘This research surfaced unique insights that help us to begin to dispel myths and think about practical actions to move forward.’
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
Access the full report here: What it means to be seen: Closing gaps in patient data for Black and South Asian communities.
To support real change on the ground, Liberating Knowledge also developed two practical resources:
- A short guide for health care workers to refer to in their day to day 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 with recommendations on how to lead from the top on better data collection and tackling health inequalities.
The research has produced rich and illuminating insights and shown a positive way forward for better interactions between staff and patients on health data collection. In the face of grave health inequalities and gaps in patient health records, we hope this work will give analysts and decision makers a chance to reflect on the views and needs of Black and South Asian people and their communities. We want to inform 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.
Please do use these guides in your own work and share them with colleagues. We will continue to share 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. Armed with this valuable collective analysis, we will continue to share our learning and resources and argue the case for urgent improvement with the healthcare leaders who must drive through change.
We are very grateful to Liberating Knowledge, ClearView Research, our advisory group and the many members of the public and health care staff who contributed to this project.