There's lots of great public and patient engagement work that focuses on the way health data is used. On this page we give some examples of good practice and links to useful resources, to support teams thinking about public engagement.
People care about how patient data is used because it's generated through their interactions with the health service. Organisations governing and using health data should be open about what they're doing, and responsive to public views and values. Public engagement is an important part of making that happen.
Here are some examples of public and patient engagement activities that have worked well recently. More examples have been described in this blog.
We want to add more, so get in touch to let us know what you have already done, and what you have planned.
Rapid online deliberation on Covid-19 tech
In May 2020, the Ada Lovelace Institute, Traverse, Involve and Bang the Table ran a rapid online discussion with 28 members of the public to explore attitudes to the use of technology to manage Covid-19.
The discussion was held during the initial Covid-19 national lockdown, which is why it was held online. It provided participants with a space to discuss and understand different viewpoints, to learn about the subject matter and to reflect on a variety of views as they formed their own opinions.
The work aimed to answer the question: ‘Under what circumstances do citizens think that technological solutions like the Covid-19 contact tracing app are appropriate?’ The findings were published alongside this blog post in August 2020.
OneLondon Citizens' summit
The OneLondon Citizens’ Summit was a big public deliberation exercise, where Londoners came together to debate how the city's health and care system should use data.
It was held in February and March 2020 and involved 100 Londoners from all backgrounds and walks of life. Participants were deliberately recruited to be reflective of the capital’s diverse population. Citizens came together over two weekends to discuss how the London health and care system should join-up and use people’s data to support individual care, to plan public services, and to enable research. It was the first deliberation exercise of it's size, that looked at both health and social care.
- The findings will be used to develop a single set of policies for London.
- The materials used to run the deliberation are all open for anyone to reuse.
- Mark Kewley, OneLondon's Director of Strategy, wrote a guest blog post for Understanding Patient Data on creating the right environment to involve people in policymaking.
Connected Health Cities Citizens’ jury
The Connected Health Cities (CHC) programme carried out two citizens’ juries to explore whether its planned and potential uses of health data were acceptable to the public. A citizens’ jury is a method to involve the wider community in decision-making. It involves briefing citizens in detail on a particular issue and asking them to produce a report with recommendations. The method can be used to complement other forms of consultation.
Each jury was made up of 18 citizens and ran over four days. The citizens were asked to address a set of questions about how CHC should protect and use health data, and to judge what was acceptable. Over the three days, citizens heard from and asked questions of expert witnesses, and carried out group exercises. They reached conclusions together, and were polled on their individual views at the start and end of the process.
Jury design documents, support material and videos are available, and explain how the juries were run.
Theatre performance: The Nest
The Nest is an interactive theatre production commissioned by the NIHR Greater Manchester Patient Safety Translational Research Centre, written and produced by Stand and Be Counted Theatre and supported by the Public Programmes Team at Central Manchester University Hospitals NHS Foundation Trust.
Based on the theme of sharing personal data and health information, the Nest was used as a way of introducing the topic to a wide ranging audience and to find out what people's perceptions and opinions are.
Focusing on the relationship between a father and daughter, Sean and Sara, it is set in a world where Sean's wi-fi enabled smart home system takes care of all his needs, but also monitors his behaviour and health. The play follows Sean and Sara's changing attitudes towards The Nest, covering issues such as sharing information on social media, attitudes towards sharing health data for different purposes and targeted advertising.
Alongside the performance, the audience are also invited to take part in a post-show discussion to explore the play’s themes and discuss their own feelings on data sharing.
Learning from others
We’ve been speaking to people who have run engagement activities to hear their advice for what works, and what doesn’t work. If you have experience you would like to share, please get in touch to discuss further.
In conversation with...Mary Tully on how citizens' juries made her work trustworthy.
In conversation with...Mhairi Aitken on using humour and stand up comedy to connect with a wider audience.
Tips and advice
Talk about the why – it’s vital to explain why using data is so important to improve health and care for everyone.
Be open and honest – it’s important to acknowledge that nothing is risk free.
Try to provide information in layers, with a clear and accessible summary but more detail available if required.
Go to where your audience is. Don't expect them to attend events or venues you're used to.
Don’t forget to talk about the safeguards, and how data will be kept safe and secure to protect privacy.
Don’t only talk to people who think the same as you – it’s important to engage with people who hold a range of views. And don’t forget that there isn’t one single ‘public’, and that patients might have a different opinion.
Don’t rely just on one format to provide information – printed leaflets and posters, social media, websites and conversations all have a role.
These resources are free to use and re-usable under a CC-BY licence. You can use them when talking to the public and patients, or to help create your own material. If you know of any other resources that should be added here, please get in touch.
- Case studies - when you need an example of the benefits of using patient data
- FAQs - pre-written answers to common questions from the public
- Data saves lives animations - a series of animations explaining how data saves lives following five patient journeys
- Data citation - a short statement to acknowledge when you use patient data
- Safeguards explainer - to help explain how data is kept safe
- Identifiability explainer - to help explain what anonymous means
- Identifiability spectrum pictures - re-usable pictures for explaining different levels of identifiabiliity
- Data glossary - explaining technical terms and written by Connected Health Cities
Other guides and resources:
- One London Citizens summit materials - all of the materials used to run the summit are open for anyone to use. This includes slide decks, handouts and videos of expert presentations.
- Eight principles - to help establish a role for public involvement and engagement with data-intensive health research
- Training for public participants in digital health and data use - designed by Bristol Health Partners to help increase the patient and public voice in data and digital service design and development
- Public engagement: a practical guide - a guide from Sense About Science and National Institute for Health Research, including a detailed case study on communicating the survival statistics of children’s heart surgery at different treatment centres
- A matter of life and death: how your health information can make a difference (AMRC, 2016) - booklet with case studies
- My data, my care: how better use of data improves health and wellbeing (Richmond Group, 2017) - report with case studies
Involve Foundation, Involve at NIHR and the National Co-ordinating Centre for Public Engagement have numerous resources which are freely available.
Let us know what you’re doing
We're always interested in hearing about public engagement work that our friends and partners have been working on. Write to us at firstname.lastname@example.org if you've got examples of work we could add to this page.