Call for Evidence: Public Attitudes to the Use of Health Data

Understanding Patient Data is inviting responses to a call to evidence on public attitudes to the use of health data

Please submit evidence about public attitudes to the use of health data if:

  • It was produced on or after 1st January 2021, and

  • You, your team or your organisation was responsible for producing the evidence.

We are especially interested in evidence that has not yet been published or that has been published in 2026. Please read on for more details, including how to submit your evidence.

Understanding Patient Data is building the Health Data Compass - a new, shared resource that will bring together evidence on public attitudes to health and care data into one accessible, up‑to‑date hub.

The Compass will make it easier for people across the sector to find, understand and use public insights to support more informed decisions, better communication, and more coordinated action across the health data ecosystem. 

The Compass will bring together insights from across the community and present them in a simple, transparent and searchable way. It will make it easier to see what we know, identify gaps, and build on each other’s collective learning.

To make this possible, the Compass will include an ongoing evidence submission process, allowing organisations and individuals to contribute their work and ensure it helps shape the bigger picture.

We are now inviting you to be part of that foundation by sharing your evidence and helping to build a resource for the whole community.

 

About the call for evidence

Understanding Patient Data’s delivery partner, White Tail, is supporting the development of the Health Data Compass by doing an initial systematic review of evidence about public attitudes to health data.

This review of evidence will:

  • Gather sources of evidence that will be included on the initial version of the Health Data Compass in Autumn 2026; and
  • Guide how information on the Health Data Compass will be organised, structured and made accessible and searchable to users.

White Tail’s evidence review has two components:

  • A systematic search of academic and grey literature on this topic that was published between 1st January 2021 and 31st December 2025; and
  • An open call for evidence on this topic via a submission portal.

White Tail have completed the systematic literature search component and are now asking for stakeholders to submit evidence that may have not been captured through their search process.

 

How we will use your evidence

White Tail will add the evidence you submit to the evidence gathered and analysed via their systematic search and removing any submissions that are not eligible for inclusion, including duplicates of documents already gathered through the systematic literature search.

If your evidence is eligible for inclusion, White Tail will:

  • Analyse what your evidence tells us, alongside the other evidence included in the review
  • Describe the total evidence collected and analysed in a report to Understanding Patient Data about public attitudes to health data landscape since 2021, including your evidence in the list of references and potentially referring to the evidence in the body of the report
  • Utilise the analysis to advise Understanding Patient Data and their web development partner on how to structure and present information on the Health Data Compass. This could include specific search categories and filters for navigating the evidence on the Compass.

If your evidence is eligible for inclusion, Understanding Patient Data will potentially publish summary information about your evidence on the Health Data Compass, including the use of metadata to support user navigation of the Compass.

 

What we are seeking

We are seeking submissions of evidence about UK public attitudes to health data that have been produced since 1st January 2021. We are focusing on this period (a little over 5 years) to ensure that the evidence is relevant to the current context of health data usage in the United Kingdom.

By public attitudes, we mean any work that explores how members of the public feel about different ways in which health data is used (including sharing data), and/or why they feel the way they do about this.

By health data, we mean any data, information or records that are held by the NHS or by equivalent healthcare providers and relate to patient care. We are not looking for evidence about other types of data held by the NHS, such as information about NHS staff, nor other types of information about members of the public, such as employment data. Evidence about social care data is not eligible for inclusion unless the source also includes information about health data.

We invite submissions only from the organisation(s), team(s) or individual(s) responsible for generating the evidence. This is to ensure that those submitting have the authority to permit Understanding Patient Data to use their information in the ways described above. It is also to prevent duplicate submissions being made of information that is publicly available online.

In terms of sources of evidence that may not have already been captured by our systematic literature search, we are especially interested in:

  • Any evidence published or produced in 2026 (since our systematic search only goes up to 31st December 2025); and
  • Any relevant unpublished work produced since 1st January 2021.

As a guide, we have provided some information about what types of evidence are eligible for inclusion:

  • Written in English
  • Published or produced since 1st January 2021
  • Focusing on public attitudes to using and sharing patient health data
  • Focusing on data held by the NHS (or healthcare providers with similar status)
  • Focusing on patients in the UK or relevant to the subject matter in general terms
  • Published in peer-reviewed journals, sources of grey literature described in the search strategy, or shared by stakeholders

Previously unpublished evidence

You must only submit evidence that has not been previously published if you have the authority to publish it, in that you are the intellectual property (IP) owner, or are representing the IP owner. As part of the submission we will ask you to confirm that you have authority and we may separately verify the submission with your organisation to check that we have permission to use it.

We also require that no personal identifiable data is included in the submission, e.g. information about the research subjects or their actual health data.

 

How to submit your evidence

To submit a piece of evidence, please go to our dedicated Microsoft Forms portal and complete the form and follow the instructions for submitting your evidence:

Submit your evidence

The form is managed by our delivery partner, White Tail, who will analyse your submission. The form will ask for details about you and/or your organisation so that we can credit you and verify the submission if required.

Please note that you will need to complete a new form for each individual piece of evidence you wish to submit.

To help you prepare your submission, you can download an MS Word version of the submission form here:

[ADD LINK]

If you have any questions or problems submitting evidence in this format, please get in touch at UPDcallforevidence@whitetailconsulting.co.uk