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Feedback responses

Data Saves Lives, the draft data strategy for health and social care, was published by the Department for Health and Social Care on 22 June 2021.

On behalf of the Department, NHSX (now part of the NHS England Transformation Directorate) undertook an online public survey to allow the public and broader stakeholders across health and social care to provide feedback.

Through a mix of closed-form and open-ended questions, feedback was asked on:

  • the commitments in the strategy and how we will deliver them
  • the vision statements for each chapter (at the beginning of each section)
  • the three overall priorities which underpinned the strategy (in the executive summary)
  • the different ways we would be engaging
  • other feedback on what people thought were the key challenges and most important issues

The survey was supported by other types of feedback, including:

  • email submissions
  • workshops held across regions focusing on the content of individual chapters

Analysis of the survey helped inform the final version of the data strategy, and how we will engage with the public and stakeholders going forward.

Response rates

We received 567 responses to the survey. Not all questions were answered by every respondent as some were optional.

Types of people responding

How survey respondents defined themselves. The number of ‘finished’ respondents is also given. Those answering ‘Other’ mostly included industry and charities.

Would you primarily count yourself as Respondents
Public or citizen 86
Patient or service user 85
Other (explicit) 68
Researcher or academic 34
Primary care staff (e.g. GP, nurse, pharmacist) 28
HealthTech or CareTech professional 23
NHS Digital, Data and Technology (e.g. analyst, data scientist, technical architect) 22
NHS leadership or management 22
Information governance professional 19
Local government staff (e.g. management, delivery) 13
NHS hospital clinical (e.g. doctor, nurse, radiotherapist) 12
Social care professional or carer 12
Health and care arm's length body staff 11
NHS hospital non-clinical (e.g. administrative, operations, finance) 8
Policymaker (central or local government) 7
Public health professional 7
Health and care regulator staff 5
NHS planner and commissioner 2
---
No response 103

Views on the vision statements

Of 399 respondents to all 7 statements, 271 (68%) agreed or partly agreed with all of them.

The statements with most agreement (both ‘agree’ and ‘partly’ agree) were:

  • Chapter 1 - on patient-centred care (89%)
  • Chapter 2 - on staff access to information (89%)
  • Chapter 3 - on information for decision making (84%)
  • Chapter 4 - on service user and carer access to information (88%)

The statements with the lowest agreement (both ‘agree’ and ‘partly’ agree) were:

  • Chapter 5 - on researcher access and use of information (79%)
  • Chapter 6 - on data architecture (82%)
  • Chapter 7 - on innovator support for solution development (82%)
Chapter 1 (on patient-centred care)

Our most important responsibility is to deliver truly patient-centred care, which puts people before systems, so people will have better access to their personal health and care data and understand exactly how it is used.

  • Agree (74%)
  • Partly agree (15%)
  • Partly disagree (4%)
  • Disagree (4%)
  • Neither agree nor disagree (3%)
Chapter 2 (on staff access to information)

Staff can only do their best when they have the right information, so staff will have easy access to the right information to provide the best possible care.

  • Agree (75%)
  • Partly agree (14%)
  • Partly disagree (4%)
  • Disagree (4%)
  • Neither agree nor disagree (3%)
Chapter 3 (on information for decision making)

Leaders and policymakers have a responsibility to continually improve how the people we serve receive care, so leaders in every community will have up-to-date sophisticated data to make decisions and help the health and care system run at its best

  • Agree (68%)
  • Partly agree (16%)
  • Partly disagree (6%)
  • Disagree (6%)
  • Neither agree nor disagree (5%)
Chapter 4 (on service user and carer access to information)

Service users and their carers will have high quality, timely and transparent data to improve outcomes, and can easily access to help them make choices about their care

  • Agree (72%)
  • Partly agree (16%)
  • Partly disagree (3%)
  • Disagree (6%)
  • Neither agree nor disagree (4%)
Chapter 5 (on researcher access and use of information)

Our researchers can only deliver results based on the information available to them, so they will be able to safely and easily access data to provide innovative solutions to health and care issues for the benefit of every citizen in every community

  • Agree (60%)
  • Partly agree (19%)
  • Partly disagree (9%)
  • Disagree (7%)
  • Neither agree nor disagree (5%)
Chapter 6 (on data architecture)

To maximise the efficiency and effectiveness of our infrastructure, we will ensure the data architecture underpinning the health and care system can easily work together to make better use of data, no matter where it is kept

  • Agree (65%)
  • Partly agree (17%)
  • Partly disagree (5%)
  • Disagree (8%)
  • Neither agree nor disagree (5%)
Chapter 7 (on innovator support for solution development)

Time and safety are both essential, so innovators will be supported to develop and deliver new solutions safely and sensibly for the benefit of all citizens, staff and the system

  • Agree (67%)
  • Partly agree (15%)
  • Partly disagree (6%)
  • Disagree (6%)
  • Neither agree nor disagree (6%)

Views on the 3 priorities

Of 398 respondents to all 3 priorities, 287 (72%) considered all of them at least “very important”.

The statements had the following levels of importance rating (very or extremely), in order of the most importance.

To note, we have updated the final strategy which no longer contains these specific priorities, these were in draft only.

A chart depicting the percentages of respondents that considered the importance of the following priority, "To build the right foundations - technical, legal, regulatory - to make that possible". 61% found this extremely important, 27% found this very important, 8% found this moderately important, 3% found it not at all important, and 2% found it slightly important.

Statement

To build the right foundations - technical, legal, regulatory - to make that possible

A chart depicting the percentages of respondents that considered the importance of the following priority, "To build understanding on how data is used and the potential for data-driven innovation, improving transparency so the public has control over how we are using their data". 70% found this extremely important, 22% found this very important, 4% found this moderately important, 4% found it not at all important, and 1% found it slightly important.

Statement

To build understanding on how data is used and the potential for data-driven innovation, improving transparency so the public has control over how we are using their data

A chart depicting the percentages of respondents that considered the importance of the following priority, "To make appropriate data sharing the norm and not the exception across health, adult social care and public health, to provide the best care possible to the citizens we serve, and to support staff throughout the health and care system". 55% found this extremely important, 24% found this very important, 10% found this moderately important, 7% found it not at all important, and 4% found it slightly important.

Statement

To build understanding on how data is used and the potential for data-driven innovation, improving transparency so the public has control over how we are using their data

Views on the commitments

Of 375 respondents to all seven chapters, 203 (54%) agreed or strongly agreed with all of them.

  • Chapter 1: Bringing people closer to their data commitments (Positive sentiment: 79%)
  • Chapter 2: Giving health and care professionals the data they need to provide the best possible care commitments (Positive sentiment: 87%)
  • Chapter 3: Supporting local and national decision makers with data commitments (Positive sentiment: 76%)
  • Chapter 4: Improving data for adult social care commitments (Positive sentiment: 81%)
  • Chapter 5: Empowering researchers with the data they need to develop life-changing treatments, models of care and insights’ commitments (Positive sentiment: 76%)
  • Chapter 6: Helping colleagues develop the right technical infrastructure commitments (Positive sentiment: 83%)
  • Chapter 7: Helping developers and innovators to improve health and care commitments (Positive sentiment: 74%)

The chapters that drew wider agreement on commitments were:

  • Chapter 2 (87%)
  • Chapter 6 (83%)

The chapters with lower agreement were:

  • Chapter 3 (76%)
  • Chapter 5 (76%)
  • Chapter 7 (74%)

Reasons for disagreeing with commitments

175 of 567 (31%) identified at least one area where they disagreed with some commitments, from the multiple selection options.

The biggest issues were:

  • Data protection and security (112)
  • Accountability (94)
  • Transparence (75)
A chart depicting the reasons respondents gave when objecting to any of the commitments. Accountability 54%, Transparency 46%, Ethical objection, fairness or inclusiveness 43%, Data protection and security 64%, Impact on staff 22%, Timeframe 23%, and Technical deliverability 33%.

If you disagree with any of the commitments, can you tell us why?

Key themes for broader public discussion

373 of 567 (65%) finished survey respondents picked at least one issue that they would like to be updated about, from the multiple selection options (or ‘other’).

The most popular issues were:

  • transparency and trust (261)
  • choice and control of health data (193)
A chart depicting the percentages of the key themes that respondents thought we should be focusing on in our broader public discussion. Transparency and trust 70%, Choice and control of health data 52%, Access to health data 48%, Health and care inequalities 44% and Other 12%.

What key themes you think we should be focusing on in our broader public discussion?

How people would like to be kept updated

348 of 567 (61%) finished survey respondents chose at least one way in which they’d like to be kept updated, from the multiple selection options (or ‘other’).

The most popular were:

  • through updates and information on the NHSX website (195)
  • by attending webinars led by NHSX (146)
A chart depicting the percentages of how respondents would like to be informed in the future about the delivery of the commitments in the strategy. Through updates and information on the NHS website 56%, By attending webinars led by NHSX 42%, Through your professional body of representative group 38%, Through regional events where you can find out what this means for your area 38%, and Other 14%.

How would you like to be informed in the future about the delivery of the commitments in the strategy?