There are already many initiatives underway to talk to the public and patients about how data is used. By highlighting good practice and sharing ideas among the community, we want to help support future conversations.
Public engagement can take many different forms – from simply providing information through to actively collaborating with patients to help shape the design of a project. In some cases you may need a campaign to raise awareness, or there may be opportunities for dialogue activities, to help you understand more about what people think.
Here are some examples of public and patient engagement activities that have worked well recently.
We want to add many more, so please get in touch to let us know what you have already done, and what you have planned.
#datasaveslives is a public engagement campaign started by The Farr Institute to highlight the positive impact of health informatics research on public health.
Get involved by pledging your support and using #datasaveslives on twitter. Or simply follow the conversation by searching #datasavelives to find out what the community is currently working on.
Connected Health Cities Citizens’ jury
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.
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.
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.
Findings from the citizens’ juries will impact on the way data is used across the CHC programme.
Jury design documents, support material and videos are available, and explain how the juries were run.
Our conversation with Mary Tully tells about how citizens' juries made her work trustworthy.
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.
Preparation for and audience reactions of the 2015 and 2017 performances are summarised using storify.
Data Points podcast
The Administrative Data Research Network produces a podcast series - Data Points. Each podcast is a 15 minute interview with a data expert about how they access and work with data to address major issues. Listeners can hear from those championing the use of the data and researchers.
Data saves lives animations
We've produced a series of animations to explain how data saves lives. Following the journeys of patients with cancer, a heart attack, diabetes, dementia and asthma, they show the huge range of ways data is used to improve care, and the safeguards that are in place to protect confidentiality.
The series has been developed in partnership with charities, patients and clinicians. Our news article explains more and the animations have been produced with a cc-by licence and are available for reuse by anyone.
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
- How do researchers use patient data? - an animation answering questions about how patient data is used by university researchers
- 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
- Farr Institute Public Engagement - more information on how The Farr Institute works with the public and researchers
- Administrative Data Research Network - more information on how ADRN works with the public and researchers
- 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 and the National Co-ordinating Centre for Public Engagement have numerous resources which are freely available.
Eight principles have been identified to help establish a role for public involvement and engagement with data-intensive health research.
And don’t forget to use #datasaveslives on twitter.
Let us know what you’re doing
We're always interested in hearing what you are doing and we need your help to add many more examples to this page. Please email email@example.com telling us what you have already done, and what you have planned so we can build a fuller list of activities.