A patient preferences tool programme continues to explore enabling members of the public to take control of their data sharing preferences.
Establishing GNCR, and creating one shared care record for patients across the North East and North Cumbria, relied heavily on engaging citizens in project development to making sure it was acceptable and met the needs of all citizens. This work has provided both the impetus and evidence needed to guarantee that citizens co-produce and co-design the GNCR. The obligation was met that all systems and practices are transparent, fair and commensurate with citizens’ expectations, and that the overall project enjoys their ongoing support.
Multiple approaches were used to reach into different communities and understand people’s views and perspectives across a variety of settings.
Teesside University, Newcastle University and Healthwatch Darlington collaborated on the collection and analysis of data through an initial series of 23 focus groups conducted across the region and designed to explore attitudes towards sharing healthcare records. Participants expressed clear values and expectations about sharing health data relating to them. Fundamental to these values was an expectation of respect. Analysis identified five key values developers of the GNCR now know what they must observe: reciprocity, fairness, agency/control, privacy and transparency/trust.
The focus groups were followed by an online YouGov poll in which over 800 people across the region were asked for their views about the aims of the GNCR. The majority of those surveyed were in favour of data sharing, but 86% also believed it was important for them to control their own privacy settings so they could choose who they share information with. Over half said they would share their identifiable data on a secure database with approved researchers.
Researchers from Newcastle University then considered a key finding from the focus groups: that participants often reflected on how the GNCR might affect people other than themselves. Using a variety of ethnographic approaches, the team engaged with nine groups and organisations in the Teesside region working directly with marginalised communities. The findings highlighted how members of some social groups have deep seated concerns about presenting to a doctor or allowing their personal information to be shared. Anxiety about doctor-patient confidentiality or doubting that personal information will be held in strict confidence was shown to push people away from accessing healthcare. Moreover, improved systems for sharing health and care data are not a replacement for engaging fully with individuals each time they are in contact with health service providers.
Finally, a patient preferences tool programme (the Leadgate project) continues to explore what questions and technology would need to be developed to allow members of the public to take control of their data sharing preferences. Trialled initially in County Durham and Darlington NHS Foundation Trust, this work has yielded positive results with around 80 per cent of respondents signing up to be contacted to participate in clinical trials. Leadgate project in particular looked at whether it was possible to collect the communication and data sharing preferences of people at one GP practice in County Durham. The project was co-funded by NENC CHC and the National Institute of Health Research NENC. The response was positive, with considerable insight coming back from the practice patients.
The learning from this has informed the future development of the Great North Care Record patient preferences tool and provided insight into appetite within the region for individuals to sign up to clinical trials.