National government

How can people make informed decisions about the use of their health data?

Prototyping consent models for health and social care data
May - June 2016

In 2015, the Health Secretary challenged the NHS to make better use of the data it holds on patients and the public. However, he also recognised that following, the NHS has not yet won the public's trust around the use of their data.

In this project, Involve worked with Policy Lab to test a number of different ways to present a new consent model developed by the National Data Guardian.

Securing informed consent for the use and sharing of health and social care data can be difficult. The issue is hugely complex and the public is often unaware that they can or need to give consent. The challenge is how to ensure that the public is able to access sufficient, accurate information in order to make an informed decision about whether or not to consent to their health information being used and shared across the NHS.

The National Data Guardian’s model for consent had been tested through some focus groups and with an expert working group. This project aimed to test, and iterate through the testing, some tangible prototypes (mock-ups of possible webpages, leaflets and images) with stakeholders and the public.

What we did

We ran a series of workshops in six locations across England involving patient representatives, and professionals from health and social care services. The workshop tested a number of low-tech prototypes aimed at exploring a number of different areas such as the language used, the best visual presentation of the models and options, and where and when the request for consent should be made, for example.

Who was involved

Partners and funders: The Government’s Policy Lab and the National Data Guardian

Participants: Patient representatives, and professionals from health and social care services

What was achieved

The six workshops produced a wealth of data about the prototypes which was used to feed into the revision and finalisation of the National Data Guardian’s model for consent.


The Health and Social Care Data: Report on User Engagement Workshops is available here


For more information on the Deliberative Workshop method click here.

Photo NATS UK Air traffic control: Flickr (CC BY-NC-ND 2.0)

Listing photo Janneke Staaks: Flickr (CC BY-NC 2.0)