Healthcare staff, patients, and the wider public need to know that sensitive data will be put to good use.
It’s widely agreed that there is a need for good quality data about patient demographics – and those of the wider population. We need accurate information about different experiences and outcomes and knowing about how these might vary among different ethnic groups or other characteristics is important to improve quality, identify gaps in provision, and meet the needs of diverse populations.
The problem lies with what happens with this data. So far, we’ve had more success in finding out where inequalities lie and understanding their possible causes than we have in overcoming them.
There have been positive developments, but people from ethnic minority groups still have poorer outcomes and healthcare experiences. The effects of COVID-19 have magnified these differences, affecting groups with poorer health even more. Beginning to tackle the underlying causes of ethnic inequalities would have a positive impact especially for people who are currently poorly served by healthcare. How can we make better use of data to achieve this?
The UK is already making efforts to document the relationship between ethnicity and health and is one of only four European countries that mandates collection of ethnicity data in specific types of official statistics (like the national census). This isn’t enough, though. The completeness of data matters too, as countries like New Zealand have found. New Zealand routinely collects ethnicity data, but the country’s health statistics are still thought to undercount people of Māori ethnicity by 15-20%, affecting the provision and take-up of healthcare services.
Tackling these data issues will require a range of strategies. Making sure that common data collection standards are observed is a basic, and vital, step. Better incentivisation to collect data may also help.
It will also help if people understand the reasons that their data is being collected in the first place. In the case of healthcare staff, it would be helpful for them to know they aren’t wasting their valuable time – and that the data collected will be put to good use. For patients, some of whom might (with good reason) be sceptical about the collection of sensitive data, it is important to show that the potential benefits of disclosure outweigh the risks.
A guarantee of public good
Trust in public authorities is low among some ethnic minority groups, and the “social licence” for collecting and processing data must be respected. The concept of social licence describes the ways in which society expects more than just compliance with rules and regulations when it comes to particular activities, like data collection. This is especially the case when those data are potentially sensitive. Public trust must be earned rather than taken for granted.
Including the groups most affected throughout the process of collecting, collating and using data is central to building the trust that underpins the social licence. A commitment to partnership also helps to ensure that any improvement efforts are enhanced by people’s lived experiences.
The social licence is fragile, and if we don’t demonstrate the social value of data collection to people, they may be reluctant to continue to support it, reducing the quality of the data available. On the other hand, combining data, inclusion and rigorous delivery of improvement can create a virtuous circle, rebuilding trust through clear impact on the quality and equitability of services and laying the collaborative foundations for further work.
This piece draws on presentations and a panel discussion at our annual event THIS Space 2022 on “Why we need to collect good demographic and ethnicity data for improving healthcare”: