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Your feedback on the draft data strategy

We received responses to the draft data strategy from 629 individuals and organisations. Most responses were positive, especially on the vision for how to reshape the health and care system with data. 85% of responses in the public survey agreed or partially agreed with the vision statement at the start of each user group’s chapter.

Respondents were especially supportive of the commitments to prioritise person-centred care, reduce the data burden for frontline staff, promote open data standards and interoperability, and simplify information governance.

There were also lots of suggestions about where we could improve the strategy. Here is a summary of what was said by theme, and how we responded.

Improving public trust

You said
  • we need to explain how we are going to improve public trust, following the high profile discussions brought about by GP Data for Planning and Research
  • when we engage with the public, it does not always feel like genuine engagement
  • we are not explaining clearly enough how data sharing will benefit people individually
  • there is not enough explanation about third party data access, including by commercial organisations
  • we sometimes look like we are trying to avoid answering the most difficult questions
  • we need to be clearer and more transparent about the work we are doing, and this needs to be continuous, not a one-off exercise
We have
  • reflected on the feedback about low levels of public trust and agree with what we have heard
  • set out how we intend to improve public trust in the coming years in a brand new first chapter of the strategy, including new commitments to a data pact with the public, increased public engagement on the future uses of data, and a standard for public engagement which will be followed by all organisations using health and care data
  • committed to establish an expert advisory group with which we will co-design a robust plan for rebuilding public trust, and which will provide a check and challenge function to make sure we never fall below the ambition and standard set out in this strategy

Opt-out

You said
  • there was no mention of the national data opt-out and people’s right to choose if their data can be used
  • the current opt-out is a blunt tool - we should give people a more nuanced choice so they can select what research and sharing they want to allow
We have
  • committed to how we could improve the opt-out in the future

Clarity

You said
  • the strategy’s priorities and visions are the right ones
  • the document lacks clarity, using terms that are ambiguous or mean different things to different readers
  • the commitments lack the detailed interim steps and dependencies required to achieve them
  • the legislative proposals require further clarification
  • it is unclear whether the strategy is for England, or the whole of the UK
We have
  • maintained very similar priorities and visions to the draft version
  • added a glossary to be clear about what we mean
  • purposefully kept the strategy as a high level document to set vision and direction; individual work streams are mapping their interim steps and will publish roadmaps as needed
  • provided further detail on the legislative proposals in Annex A
  • clarified on our GOV.UK website page that the strategy is for England, and commits to closer working with devolved administrations

Funding and resources

You said
  • that many of the commitments listed in the data strategy will require a large amount of funding to be achieved
  • this is especially the case for adult social care, where there are many small, independent businesses, some of which lack digital infrastructure and skills
  • We did not make it clear enough why spending on data should be prioritised in a post-pandemic world
We have
  • fully costed all commitments in the strategy and ensured they are funded as part of this Spending Review period
  • provided further details about funding in relation to digital transformation in the health and social care sector in ‘Who Pays For What?
  • made it clear that investment in a data-driven health and care system will deliver better services, better outcomes and contribute to this nation’s recovery from the pandemic

Ambition

You said
  • the strategy’s scale of ambition, and sense of direction is much needed and very welcome
  • some of the timescales on the commitments seem overly optimistic given the complexity of the system and fragmented technology
  • we did not mention the barriers which must be overcome to achieve that vision, and this creates doubt about achievability
We have
  • maintained the scale of ambition, vision and direction
  • reviewed and confirmed the timescales on commitments

Data quality

You said
  • the drive for interoperability by default and the use of national standards to reduce data silos was very welcome
  • poor quality data is a significant barrier to successful data use and yet there was very little mention of this
  • the strategy does not acknowledge the lack of consistency across the system and that data exists in silos caused by different organisations taking different approaches to data collection
We have
  • included a new commitment for a standards and interoperability strategy
  • invested dedicated resource into reviewing and improving, with partners, data quality within the health and care system
  • highlighted how improving standards and interoperability will improve data quality

Training and culture

You said
  • you support the strengthening and upskilling of analytical and data science
  • you agree with the need to improve the data literacy of the social care workforce
  • the training of frontline staff in in the use of data needs improving, so they can see the benefits of it being accurately captured
  • a cultural change in how data is used is as important as technical changes
We have
  • indicated the growth in the analytical and data science community, and highlighted the work of Health Education England in developing their specialist academies
  • committed to providing inclusive training to improve the data and digital literacy of the adult social care workforce
  • emphasised the role of AnalystX in providing training content for frontline staff and leaders on the benefits of data use and analytics
  • published the Information Governance Framework for Integrated Health and Care in September, as well as emphasising the transformative change of the forthcoming Information Governance Strategy

Adult social care

You said
  • it’s great to see adult social care given prominence with its own chapter
  • social care also needs to run through entire strategy as some other chapters read as though they only relate to health
  • we need to consider the range of different providers of adult social care
We have
  • kept the standalone adult social care chapter while also changing the language throughout the document so it is clearer that the whole strategy relates to care as well as health
  • clarified language to make it clearer which parts of the care sector are being referenced

Health inequalities

You said
  • health inequalities were a significant issue during the Covid-19 pandemic but they are only mentioned a few times
  • existing datasets are inconsistent, with certain groups under-represented
  • we need to ensure that we are engaging all groups if we are to improve public trust
We have
  • created a new section on health inequalities, including how artificial intelligence can help to reduce health inequalities, through both the AI Ethics Initiative and funding projects alongside the Health Foundation
  • we have committed to, as part of the forthcoming health disparities white paper, set out the role that data – and data improvement initiatives – must play in government’s overarching approach to reducing the gap in health outcomes between different places and communities across the country

Digital inclusion

You said
  • the move towards patient-centred care is to be encouraged, but questioned how those who don’t have digital access to their data going to be kept informed and engaged
  • we need to ensure that any decisions informed by data analysis do not overlook those who are digitally excluded
  • the use of the NHS login, including via the NHS App, as the default interaction for someone with their health care could exacerbate existing health inequalities
We have
  • committed to ensuring that digital services are inclusive for all communities and requirements, and should always be part of a multi-channel offering with appropriate support (including a face-to-face) available to those who need it