The team used a range of complementary methods and approaches, with both citizens participating in core activities and outreach into communities. There was a variety of activities ranging from citizens’ juries, focus groups and public debates, to immersive games and musical performances.
Citizens’ juries are a method of deliberation where a small representative group of people come together to decide on a complex policy issue, in this case the use of patient health data. Three citizens’ juries were held by the CHC Hub over 18 months. During the first two juries, the jurors decided that when patient health data is being used outside the NHS, the benefits of this usage must prioritise patients first, then the NHS, and only then commercial companies.
In general, scenarios leading to potentially positive health outcomes for patients were more acceptable than improved efficiency of services for the NHS, although the latter were also recognised to improve health. Jurors had concerns about whether efficiency improvements would lead to inequitable distribution or closure of services, based on their existing understanding from media reports. Many jurors accepted commercial gain if public benefit was achieved.
A third jury was run in partnership with the National Data Guardian office, recruiting 18 people from across Greater Manchester. This jury deliberated on defining the boundaries for “reasonable expectations” on data sharing, a yardstick used in court cases to decide whether there is a right to expect privacy in a particular set of circumstances. The jurors spent three days deliberating the levels of privacy a fictitious patient should reasonably expect in different scenarios and when it was reasonable to share identifiable data. As with other juries on other topics, the jurors became more supportive of data sharing the more they understood why it was needed.
They concluded that, in most of the scenarios they discussed, patients would reasonably expect that confidential patient data would be shared between healthcare professionals for the care of the patient, although that this did not necessarily mean that all data could be shared. Some but not all members of the jury were also supportive of the use of such data for altruistic reasons other than direct care, such as helping with the diagnosis of other patients for the ‘greater good’. The National Data Guardian’s office has worked with CHC Hub to implement findings from this citizens’ jury in national initiatives. The series of citizens’ juries was of great interest to academia, policy makers, industry and government communities and was presented widely in the UK and internationally. The series has raised interest in the citizens’ juries approach as a way of engaging with the public around complex topics and led to further collaboration between CHC and the National Data Guardian’s office.
How CHC Hub delivered the programme
Two four-day citizens’ juries were run: one in Manchester and one in York to investigate what informed citizens considered to be appropriate uses of health data and understand why they made those decisions. Jurors considered the acceptability of eight scenarios of anonymised health data use. The scenarios were either planned CHC initiatives to improve care pathways or possible commercial data uses that were as yet unplanned.
Informing the UK Genomic Medicine Service
The NHS is positioned to be a “world-leading healthcare system in its use of cutting edge genomic technologies to predict and diagnose inherited and acquired disease, and to personalise treatments and interventions” (6).
With a new Genomic Medicine Service in England (Spring 2020), the wider data sharing required within and between regions providing the service carries implications for privacy, consent processes and models of information governance. The CHC Hub worked with the regional genomic medicine services in the North of England to understand public values, interests and concerns in relation to sharing genomic data in the course of routine care within the NHS.
A total of 44 participants (16 patients; 28 members of the public) took part in six qualitative, deliberative focus groups in Sheffield and Manchester. The participants of the groups were provided with information and opportunities for reflection and group discussion, creating a greater level of engagement than that seen in standard focus groups. The patients and the public supported the creation of a collective resource of genomic data (like a database) that could be built up over time and drawn upon more widely within regional Genomic Medicine Services. The findings reiterate the need to consider the timing and delivery of information to patients about data sharing alongside any changes to these services. The findings of the focus groups were used to inform the design of the new NHS Genomic Medicine Service in the UK.
Public Debate on Use of Mental Health Data
The CHC Hub public engagement activities opened up discussions with citizens as to whether mental health data should be treated differently than physical health data. There is a known lack of parity in research funding between mental and physical health problems. The CHC Hub collaborated with the British Science Association bringing together four experts from across research, the NHS and mental health charities to publicly debate the question: “Do you agree that mental health data is no more sensitive than physical health data and that both should be used equally in data linkage research?”
The discussions during the debate highlighted important nuances for the trustworthy use of mental health data, which informed our information materials and further public engagement work.
The experts debated a range of topics including: how current legislation applies to different types of health data, how research practice might change if mental health data were actually declared more sensitive than physical, whether the data we currently have access to is sufficient to produce meaningful results in mental health research, and how individuals would feel if their data were leaked. The debate sparked poignant and thought-provoking discussions between the speakers and the audience around mental health service provisions, stigma and how the use of data could improve the lives of those affected by mental illness.
The findings were used to inform local priority setting for the use of mental health data and projects within CHC.
#Data Saves Lives Online Engagement
Twitter is used in healthcare with wide participation from patients, citizens and healthcare professionals. #DataSavesLives is a multi-platform campaign that regularly demonstrates the trustworthy re-use of health data and has kick-started thousands of online conversations. The hashtag #DataSavesLives was established in 2014 and has developed during the lifetime of CHC to become a global movement.
#DataSavesLives collates and shares examples of how health data from patient records and other sources could be used to create health benefits for the public. 4175 original tweets, 9,720 retweets and engagement from 3,649 unique Twitter users were observed in 12 months (2017). In total, 2,756 (66.0%) of original posts were retweeted at least once. Higher frequencies of tweets were observed during the weeks of prominent policy publications, popular conferences and public engagement events. Users span academia, health services and policy, charities and patient networks from the North of England.
Cluster analysis based on retweet relationships revealed an interconnected series of groups of #DataSavesLives users. Thematic analysis of tweets showed that #DataSavesLives was used for a broader range of purposes than its original goal, including event reporting, encouraging participation and action, and showing personal support for data sharing.
#DataSaves Lives Animation
A three-minute animation was created in Spring 2018 in collaboration with The Farr Institute of Health Informatics Research and developed with patients and members of the public from across the UK. The animation was designed to answer common questions about health data sharing as well as increase public awareness of how routinely collected NHS data is safely and securely re-used by universities for health research. Since its release, the animation has been viewed online as well as being shown at events and conferences to large audiences. There have been over 4,000 unique views with coverage across the UK and globally from North America to the Middle East.
About the #DataSavesLives animation
The short film takes viewers on a journey to understand how patient data is created and shared, and its important role in research to improve the health of patients and populations. Examples are highlighted with relevant case studies and the measures that universities undertake to ensure patient data is protected and accessed are explained.
Engagement Through Festivals
The CHC team attended four festivals over two years engaging thousands of diverse groups of citizens on accessing and using health data.
Festivals can be a great way to start new and continue ongoing conversations with people on the use of health data. Health data was a surprise hit for CHC at a variety of public science events in the North: such as the Manchester Science Festival (2016), Bluedot Festival (2017, 2018) and Manchester Caribbean Festival (2017). Teams from CHC used these opportunities to have meaningful conversations on the use of people’s health data, with very broad and varied different groups of people in relaxed and informal settings. Festival attendees could take part in a suite of data-inspired activities aimed at a range of ages and interests such as data friendship bracelet making (each thread represented a different data set) and assembling a data jigsaw to reveal the #DataSavesLives message.
Immersive Earworm Game
The Earworm Game is a citizen engagement tool on health-related data science concepts and use of patient data.
The game made its debut at the Bluedot Festival in 2018 and was then delivered at multiple further festivals thereafter. The game is immersive, with players working together to uncover the best treatment for a virus that attacks the brain over 5 minutes. The better they are at accessing patient data, putting data security in place and gaining public trust, the more likely they are to win.
The Earworm game takes players through the procedures and considerations inherent in health-data research and elegantly meshes them together, creating a picture of why access to patient data is necessary for successful research and how important data security and public trust are to this process; all while also providing a fast-paced, fun gaming environment.
Playing games at festivals
“A good demonstration of the importance of keeping data safe” (Immersive Earworm Player)
A survey with around 300 players:
79% said that they learned something new about health-related data science while playing the game.
Players gained 3 learning points:
the importance of data security,
the complexity inherent in the research process and
the importance of sharing data for health research: which corresponded well with those intended.
How to play
Players are split into two teams, medical professional role or health researcher role. Both teams need to work collaboratively to successfully complete the game and gather sufficient information about the three possible treatments for a virus that attacks victims’ brains, leaving sufferers unable to shake Oasis’s Brit Pop classic, Wonderwall, from their heads.
The teams build up information on treatments by interacting with the data board – to uncover the best treatment, they collect samples in the form of beads. With gamification of the complex information and concepts that is used for health data access, citizens who would otherwise be less involved in these discussions were able to think about these concepts.
Public Engagement Music Performance
If you could hear your health data, what would it sound like?
Has patient data got (algo)rhythm?
These were the tongue in cheek questions asked prior to a live performance of #MusicSaysDataSavesLives, a suite of five short contemporary musical pieces by composers from the Royal Northern College of Music (RNCM) Centre for Practice and Research in Science and Music (PRiSM). This was the final public engagement activity that marked the end of the CHC programme.
Composers worked with each of the four CHC regions in North East and North Cumbria, North West Coast, Greater Manchester and Connected Yorkshire as well as the CHC Hub to create five short musical pieces inspired by research projects that are using patient data to address the health priorities in those regions.
For example, the composer of the hub CHC piece, Zakiya Leeming, described how she developed discrete musical identities for each of the four and then showed how each region was influenced by the “learning” i.e. the pitches and rhythms from the other regions, leading to a final merge of the materials to musically depict the successful conclusion of the CHC project.
The pieces were performed by the Festivo Winds woodwind quintet and were interspersed with short conversations between each composer and a researcher on topics from the project that inspired them. Following the performance, a lively question and answer session continued the dialogue between composers, researchers and the public.