A new report by Involve and the Carnegie UK Trust has established an effective framework for all public service providers to assess and evaluate the benefits that the better use of data may be able to deliver whilst balancing this against the potential risks that sharing data may entail.
As healthcare managers, we are fundamentally aware of these tensions yet to fully realise the potential of patient data to be used as a tool for delivering public benefit, an acceptable settlement between these tensions needs to be made.
GDPR is on the tips of our tongues, but this report presents an additional dimension surrounding public expectations of data and how we can have more effective conversations around data sharing, thus enabling more consistent and better informed data decisions to create improvements in wellbeing for the public .
Emerging from the research and explored in depth within the report are three clear tests for organisations to meet to gain the social licence to share and use data more widely summarised here:
1. Is it purposeful?
- does it provide direct and tangible benefits to individuals?
- will it deliver positive social outcomes such as reducing health inequalities or social isolation?
- does it aligns with public expectations of what the data they had provided was be used for?
- does it minimise intended or unintended negative effects for individuals and groups
2. Is it proportionate?
- does it actively minimise the amount of data needed to be shared?
- does it consider the sensitivity of the data?
3. Is it responsible?
- is the data being used and shared securely?
- will deliver the intended outcomes?
The report concludes with five key features that data sharing initiatives developed to deliver public benefits should demonstrate:
- That it enables high-quality service delivery which produces better outcomes for people, enhancing their wellbeing
- That it delivers positive outcomes for the wider public, not just individuals
- That it uses data in ways that respect the individual, not just in the method of sharing but also in principle
- That it represents and supports the effective use of public resources (money, time, staff) to enables the delivery of what people need/want from public services
- That the benefits are tangible, recognised and valued by service providers and the wider public
To read the full report, click here