This report refers to the insights of 100 people from London who took part in the OneLondon Citizens’ Summit held over two weekends in February and March 2020 and discussed how they expected their health and care data to be used. This important report includes also conditions and recommendations on how the London health and care system should use these data to provide individual care, to plan public services, and to support research and development.
Most of the participants were supportive of their de-personalised data being used as they can contribute to the planning and improvement of health and care services. However, there were some concerns about over-reliance on data and potential data inaccuracies as well as about different organisations accessing the data and their motivations for using them. For this reason, they wanted reassurances about those working with their data and their purpose. Most importantly, the level of comfort around data being accessed was affected by the type of information in question. The participants were more concerned about data relevant to self-harm, alcoholism, mental health, sexual health, fertility, abortion, drug abuse, and HIV/AIDS. A reassurance for them is that they can actually select who should and should not have access to these sensitive data, which explicitly emphasizes the principle of data protection and security of the Declaration of Cities Coalition for Digital Rights.
According to their expectations, health and care data have to be accessed and used by those who need information taking always into consideration the level of threat posed and vulnerability of the patient. When the government needs this information for a policy development the public should be involved in this process as well. This means that the system of joining-up and using health information should be trustworthy and always ensure transparency and accountability as it is also mentioned in the Declaration. Moreover, safeguards should be applied, including background checks for any staff being given access and in case of misuse serious consequences both for the individual and the organisation.
Another interesting point is that the public expected that all health and care organisations in London join-up depersonalised information, as part of a population dataset, to support proactive care and that there will be consistency across the whole country. Cities, thus, have to guarantee communication at a local level, and this should be considered when developing local messaging and branding of data programmes. They should consider that the public has the ability to deal with complex issues and form practical and significant recommendations that can be used to shape policy. The report indicated clearly the effectiveness of deliberation in engaging the public in a genuine and informed conversation to explore people’s expectations and to involve them in decision-making in a way that builds trust and confidence. This is taken into account by the cities of the Coalition that try to protect and promote continuously citizens’ digital rights.
This report highlights that people’s data can be used for meaningful purposes such as the improvement of the health care system of the cities and innovation. At the same time, it demonstrates the significance of data protection and that all cities should respect the citizens’ rights including anonymity and transparency.
Written by Nefeli Iliopoulou
The report was delivered by ONE London, Ipsos, the Kings' Fund and supported by London Councils, The Mayor of London, NHS.