Across the country there are organisations, charities, public bodies and passionate individuals engaging patients and publics with how patient data is used in health and care. This blog showcases some recent public engagement activities.

For each project, there is far more to report than can be summarised here and there are many others who work in this space. However, just a few examples can highlight the wide variety of ways engagement can be carried out and demonstrate that public engagement can be much more than a tick-box exercise.

For example, Health eResearch Centre sought better understandings of public perspectives, which shaped their activities, and how they talk about their research. Early public engagement by Health Data Research UK is building a passionate community around its work and aims. For Joined Up Yorkshire and Humber, taking public engagement to local people helped representative local views inform the development of the Yorkshire and Humber Care Record.       

#datasaveslives, citizens juries and animations

Health eResearch Centre (HeRC) has worked on over 40 research projects that use health data to improve public health and healthcare services, bringing together researchers, industry and the NHS across the north of England.

HeRC strives to make the uses of health data common knowledge. Their launch of #datasaveslives is one part of this, the Twitter hastag which has since been used over 20,000 times by people and organisations all over the world, to highlight health data uses and their benefits.

Beyond social media, HeRC have gained a better understanding of how people view health data research by taking part in public events such as the Blue dot festival, and through organising their own engagement activities, including citizens' juries.

HeRC’s Cystitic Fibrosis Health Hub animation outlines how research using digital tools may improve health. It also highlights how HeRC has engaged patients and publics in research, through a mobile app and website which was co-designed by patients, clinicians and researchers. Another animation explains the Healtex project, which is looking at how free-text could be used in research to improve health.

HeRC has summarised its engagement with patients and publics in this animation.

Public boards, blogs and livestreams  

Health Data Research UK (HDR UK) leads the digital innovation hub programme. HDR UK and a UK-wide group of hubs will be responsible for bringing together different health data from across the UK, to make health data research and innovation happen at scale. By making health data available to researchers and innovators, HDR UK hope to create a better understanding of diseases and discover ways to prevent, treat and cure them.

HDR UK set up a public advisory board, to help advise them on their strategy and how to embed patient, carer and public involvement in their work. Ninety-nine people applied for a place on the board. Amanda White, Director of Communications and Engagement, has written about the process of creating the board. A full list of the public advisory board members and responsibilities can be found here.

The Digital Innovation Hub Frontiers Meeting in January 2019 was HDR UK’s first event bringing together patients, publics and charities. Attendees discussed the opportunities and risks around using health data, the main public concerns and how HDR UK can build public confidence in the way data is collected, safeguarded and used. The meeting included talks, a panel and roundtable discussions attended by 55 people, with an additional 38 joining by live-stream. A blog and report followed, reflecting on and summarising the event.

Cafes, community groups and case study pop-ups

The Joined Up Yorkshire and Humber report summarises findings from a survey, focus groups, case study pop-ups and workshops which engaged people in the region with the uses of health and care records. These findings will inform the Yorkshire and Humber Care Record.

Community discussion events took place in craft groups, charity groups and a children’s centre. Pop-up case study events took place in cafes, bars, trains, buses and around towns in the area. People gave their views on a range of short stories in which data about an individual is used to improve their care. Because research was taken to them, a diverse range of people took part.

The report has led to a set of identified challenges that the Yorkshire and Humber Care Record team will need to overcome to reassure people about how the service will use data about them. For example, raising awareness of the role of local councils in both individual care and planning health and care services. The record will also take on board how much people expect patient data to be used to tailor early interventions for individuals before a health condition develops.   

Let’s keep working together

People are taking up the baton and engaging publics and patients in the uses of patient data for research. It's a challenging conversation. By working together, we learn from one another. A consistent commitment to engage and involve diverse voices is vital. This helps create a collective, coherent approach that says patient and publics views on data uses matter and are being listened to.

You can find out more about public engagement work here. If you’d like to add any examples to our summary pages, please get in touch at hello@understandingpatientdata.org.uk