Citizen generated data (CGD) is generating considerable excitement, not least for its potential in healthcare. However, exactly what sources of health-related CGD could be most useful and how, and the ethics surrounding its use, is not well understood.
Citizen generated data – an opportunity for public health? is the latest in a series of policy briefings published by our members at the PHG Foundation on the subject of CGD. It is issued ahead of a report from the PHG Foundation to be published in autumn 2019.
Key points from Citizen generated data – an opportunity for public health? are
- Citizen generated data has potential to inform and improve public health by filling in gaps in pooled health data, facilitating behaviour change and providing feedback on and to healthcare services
- Public health professionals should be made aware of the potential CGD has to improve population health
- It is early days for the use of CGD in healthcare and, while the aggregation of CGD could have benefits at the population level, the interpretation and actionability of CGD appears limited, unless it is used in conjunction with data from established sources
- Acceptance, adoption and sustained use of CGD for population health by the public, patients and professionals will depend on demonstrating clinical benefits
- Regulation of devices that generate and collect CGD and how that data can be analysed and used is unclear
Citizen generated data has the potential to advance our understanding of health and disease, support better healthcare and improve citizen health.
The benefits for patients include empowerment through better understanding and management of their condition, resulting in better clinical outcomes and less use of NHS and social care resources. However, CGD raise a number of ethical considerations around its collection and use.
The PHG Foundation’s three policy briefings suggest considerations for policymakers:
- What is citizen generated data?
- Citizen generated data: the ethics of remote patient monitoring
- Citizen generated data – an opportunity for public health?