Citizens Council - providing a public perspective on NICE's work

Citizens Council - providing a public perspective on NICE's work

The NICE Citizens Council is a panel of UK citizens that provides a public perspective on social and moral issues relating to our work.

All our guidance and advice products are developed from the best available evidence. The Citizens Council considers the moral and ethical issues – which are not necessarily captured by evidence – that NICE should consider when developing its products. The Council meets roughly once a year for a 2-day meeting where members listen to different views from experts on topics that affect our work.

Previously, the Council has provided views on moral values that should be considered when balancing fairness with efficiency. It has also helped inform the process that NICE uses to develop social care guidance and quality standards.

Using information from personal care records – what are the issues?

This year, the Citizens Council met to examine the issues around using anonymised data derived from personal care records to research and evaluate new treatments.

The Council found that several ethical issues should be considered when it comes to the use of anonymised information originating from personal care records.

The use of data from personal care records is controversial and has been subject to much national debate. For NICE, collecting such data, with the consent of patients and service users, could help us to resolve uncertainties about the effects of interventions in order to produce our guidance.

This is particularly relevant when information from randomised controlled trials and other traditional sources is limited or absent, such as for new treatments for rare conditions. Data from personal care records can also provide information about how treatments work in ‘real world’ populations.

The Council found that several ethical issues should be considered when it comes to the use of anonymised information originating from personal care records.

These include:

  • Confidentiality, privacy and data security
  • Transparency
  • Public benefit of research
  • Good scientific practice to ensure the accuracy and validity of scientific research

The Council differed on the level of concern for these ethical issues depending on the type of organisation doing research. It placed more trust in NHS or academic groups to be open about the aims of research and to focus on public benefit, than in for-profit organisations.

However, protection and confidentiality of personal data should be a top priority for all types of organisations. If NICE wishes to use information derived from personal care records for its work in the future, then the Council says there should be complete transparency on how it will be used and who it will be shared with.

The Council also considered the collection and use of data from personal care records within the context of two overarching values:

  • social duty to contribute to the greater good
  • an individual’s right to privacy.

Most council members felt that in a publically-funded system, the ‘greater good’ should prevail as it would benefit all users. Freedom of choice should however be maintained which could be taken account of when choosing whether to receive a treatment or intervention.

Sarah Garner, Associate Director of Science Policy and Research, commented: “Going forward, the Council’s discussions and conclusions will not only feed into the development of methods and processes for NICE programmes, alongside scientific findings relating to the use of observational and real world data, but will also support the development of the NICE Observational Data Unit that supports NHS England’s Commissioning through Evaluation work. Furthermore, this report contributes to broader debate within the health and social care system.”