By the Understanding Patient Data team.
Covid-19 has made the importance of effective and responsible use of data more tangible than ever before. Data has been crucial to the pandemic response, which has fundamentally changed our lives over the last 9 months. It’s informed public health measures and decisions about who needs to shield, and supported innovative research into treatments for Covid-19.
Given all that, the National Data Strategy consultation couldn't come at a better time. It’s an opportunity to operationalise, standardise and build on good practice that already exists. It will also inform the developing Data Strategy for Health and Social Care, which we hope will improve transparency, openness and accountability in the way that health data is used.
Last week, we responded to the consultation - you can read what we said in full here. The Strategy is cross-sector and therefore much broader in scope than our usual focus. So, we decided to respond to a few specific questions, where we could draw on our evidence base and experience in the area of health data to give comprehensive answers. Here we’ll share some of the key points from our response.
Responsibility or ‘permissiveness’?
The Strategy sets out the aim to establish ‘responsible use’ of data but also states the intention to build on the ‘permissive approach’ to data use during Covid-19. These two aims could contradict each other, and the language around permissiveness suggests that encouraging access to data may be prioritised over ensuring good outcomes as a result.
Instead of promoting permissiveness, the Strategy should focus on ensuring data is used in ways that benefit people and society. This will be the only way to achieve social license for the vision it sets out. Because ‘public benefit’ is complex and value-based, there must be mechanisms for independent oversight, to ensure data is managed and used in trustworthy ways.
Communication and engagement
The Strategy recommends a “national engagement campaign” on the benefits of data use. While people should be able to understand how data about them is used, we’d caution against the idea of a national campaign. We know from our research that people are much more likely to be interested in how data is used when it relates to things they care about. So engagement about the use of data needs to happen at a local level. This can ensure the examples, risks and benefits are relevant to local contexts and the things that matter to people. Otherwise, data feels abstract, dry and far removed from people’s own lives.
The strategy needs to go further in differentiating between engagement and communication. Communication is one-way and designed to inform. Engagement is two-way and gives people the opportunity to ask questions, and shape how decisions are made and systems are designed. High-level communications about data without context or specifics can raise people’s anxieties and concerns – rather than alleviate them. Just like with engagement, it would be more effective to focus on targeted communications to inform people about data at the right time and in the right context for them.
The Government’s Research and Development Roadmap identified unequal research concentration as an important issue. When it comes to data, there is a risk that investment in improving data quality and curation will be focused on geographical areas that are already well-resourced, with other areas losing out. In the health sector, areas with strong university research and teaching hospitals may seem the best places to invest in to capitalize on developments in data-driven technology. But this could result in tools, products and services that are tailored to affluent areas and their populations' needs and demographics, while others miss out. This is an issue that the public cares about too, with 81% of people believing that the benefits of health data partnerships should be shared across the NHS.
The Strategy should establish a ‘nationally-led, locally-delivered’ approach, to make sure investment in data infrastructure and new technologies can happen across the UK. The NHSX Centre for Improving Data Collaboration is a good example of this in the health sector. The Centre has been set up to support local organisations that manage data (like NHS Trusts) within the context of a national framework.
Our full response
You can take a look at our full response here. If you’ve got thoughts or questions about the points we made - or anything else we’re up to for that matter - then write to us at firstname.lastname@example.org.