Health data consent during PIP applications

This study seeks to understand how to ask for consent to access health data in a way that gives health benefit applicants control over their data

About the study

This study is about understanding people’s views on DWP digitally accessing some NHS health data, with individual’s consent, as part of the Personal Independence Payment (PIP) application process. PIP provides financial support to help with extra living costs for people with disabilities or long-term health conditions.  

The study will explore how people feel about giving permission for health information to be accessed through their health or GP record, with their consent. The Department for Work and Pensions (DWP) has asked the National Centre for Social Research (NatCen) to carry out this research.

Your participation is:

  • Voluntary – you don’t have to take part if you don’t want to.
  • Confidential – your identity will not be linked to your answers. Your answers will be combined with other people’s and not shared individually with DWP.
  • Not linked to your dealings with DWP and will not affect any benefits.
  • For research purposes only.  

The conversation aims to understand: 

  • Your thoughts on DWP digitally accessing NHS-held health data with consent
  • Your thoughts about whether you would choose to provide consent to sharing this health data
  • Your thoughts on how communications about consent can be designed  

Your answers will help DWP decide where and how consent is asked for in the PIP application process in the future. As a thank you for taking part, you will receive a £40 Love2shop voucher that can be used in many high street shops. 

Who is carrying out the research? 

The research is being conducted by NatCen:

  • NatCen is Britain’s largest independent social research agency.
  • NatCen has over 50 years of experience working with charities and government to understand public views on important issues.
  • The research is being done on behalf of the DWP. However, NatCen operates separately from DWP.
  • NatCen will conduct the conversations, analyse data collected, and write a report outlining the findings for the DWP. 

What are the benefits of taking part?

Your feedback will help shape how consent to access NHS health data is introduced and explained during the PIP application process.

In particular: 

  • You will support decisions about when applicants are asked for consent.
  • You will shape how consensual data sharing is explained.
  • You will shape how applicants are reassured about their choice, control, and what happens if they refuse or withdraw consent.
  • As a thank you, you will receive a £40 Love2shop voucher, which can be used in many high street shops.

What does taking part involve? 

The discussion will focus on:

  • your views on DWP accessing NHS health data, with consent, from GP records.
  • your thoughts and concerns about whether to give consent.
  • how consent information and communications should be designed. 

Please note: 

  • Taking part or receiving the voucher will not affect any dealings you have with DWP.
  • DWP will not know whether you have taken part.  

Why am I being asked to take part? 

Our partner research recruitment agency, Criteria Fieldwork, has found you to be eligible to participate in the research.  

Do I have to take part?

You don’t have to take part if you don’t want to. You can contact NatCen either by phone on 0800 652 4569 or by email at PIPHealthResearch@natcen.ac.uk if you would prefer not to be contacted about this research again.

Your decision about whether to take part will not affect your dealings with DWP, either now or at any time in the future. 

Is the study confidential?  

Yes, all information provided will be treated in strict confidence under GDPR (2018). 

  • Personal details are securely held by NatCen and not shared outside the research team.
  • Data is used solely for research purposes — not for marketing or other uses.
  • Responses are anonymised; DWP cannot identify individuals or households.
  • Data will not be combined with information held by DWP or other government bodies.
  • NatCen will delete personal data within six months of the conversation.
  • NatCen processes data under its public task as the lawful basis.
  • All data is securely managed and kept confidential. 

For more information on how your data will be used, visit the privacy notice.

Contact us

If you have any questions, please contact us on please contact us at PIPHealthResearch@natcen.ac.uk or call us free on 0800 652 4569. If you wish to contact the DWP about this study, email HTP.Research@dwp.gov.uk. 

Further support

If you've been affected by issues raised in the conversation, here are some helplines.

Privacy notice

To read more about why and how the personal data (also called personal information) you provide is being used, visit the privacy notice.