Public and patient engagement activities

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.

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.

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.

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.

The Nest - Public Programmes Team case study