Questions of trust? Exploring the national data opt-out rate

It seems clear that everybody wants the best and most appropriate treatment and care whenever in life they need it. Making this possible depends in large part on health and care research which draws on data about individuals. But with the NHS’s chequered history on large-scale data projects and widespread anxiety about who can access information, there are understandable concerns from people about who might get access to their health care data, and if it will be used for the wrong reasons.

Despite this, NHS England has big ambitions to improve how it uses data for planning and research. One aspect of this is the Federated Data Platform (FDP), which aims to draw together data held in multiple local NHS organisations.

Since 2018, in response to concerns about privacy, patients have been able to opt out of their confidential information being shared beyond their immediate care for research and planning through the national data opt-out. This was introduced following a review by the National Data Guardian, which recommended new safeguards for keeping health data safe and emphasised the importance of engaging patients in what happens to their information. After a series of high-profile controversies surrounding NHS data, reports have reinforced the need for effective public engagement to build trust and ensure effective safeguards while also acknowledging the benefits of data-sharing.

Concerns have already been raised about the FDP project, particularly the potential involvement of private organisations and a lack of trust in the system. Specifically, there are worries that insufficient public engagement could result in an increased number of opt-outs (as was seen in 2021 during the controversy on GPDPR). This could jeopardise the ambition of the FDP and the ability of the NHS and researchers to use data effectively. It also risks damaging public confidence in the NHS’s plans to use data and digital tools more widely. The National Data Guardian recently acknowledged some of these issues and re-emphasised the importance of public engagement, communication and transparency.

What does the data opt-out rate look like?

As of October this year, the opt-out rate was 5.4% (totalling just over 3.3 million people). This has stayed largely stable since a significant increase in the summer of 2021, which coincided with the controversy surrounding the proposed GPDPR. The opt-out rate is higher for women, and for women aged 30-39 and men aged 40-49 respectively.

The opt-out rate also varies by deprivation. The chart shows that – as of July this year – opt-out rates decrease in the more deprived areas of the country, with the lowest opt-out rates in the most deprived parts of the country. In the least deprived areas, the opt-out rate is around a third higher than in the most deprived. There could be several reasons for this, but we know that lower socio-economic status is also related to lower levels of health literacy, which could include awareness and engagement on data-sharing.

Why might this be a problem?

Although it is essential that patients can make decisions about what happens to their information, it is worrying if there is a significant increase in opt-outs due to a lack of public engagement. Insufficient work to address these concerns risks further damaging the public’s trust and confidence in the NHS’s plans – particularly if there’s a perception that their confidential information will end up in the wrong hands or be used for the wrong reasons.  

It could also compromise the effectiveness of the data itself, especially if the data is not comprehensive or representative. A recent report explored patients’ views on the development of a ‘data pact’ – another ambition of the Data Saves Lives strategy intending to improve public confidence in how data is used within the health and care system – and reinforced the importance of transparency and honesty. However, it did also acknowledge there was scepticism from the public and a lack of understanding about how the system works. Our research into how other countries approach digital transformation in health care has also emphasised that public confidence and trust to successfully use digital tools in health care is often linked to wider attitudes towards the state and how it manages people’s information.

What should happen next?

As the FDP programme develops, monitoring the impact on the national opt-out rate and how this varies across the population will be important. A significant increase in the overall rate, or within sub-groups, could point to a lack of engagement with the public about their data and could compromise the NHS’s ability to use data effectively for research – and point to an NHS failure to address the significant and valid concerns that people have.

What is required has been stated several times and, while the ambition is there, it seems that the action to ensure that we don’t repeat the same experiences of the past has been lacking. Open conversations, clear information and understanding on what the FDP is and how it will work, as well as ongoing work to cultivate trust in the NHS approach to data, are essential. Patient-facing organisations have also emphasised the importance of understanding who is most concerned and to work with them to target information and support accordingly. Understanding who is most likely to opt out is a key starting point for this.