National Data Guardian programme to explore health data sharing

The National Data Guardian for Health and Care has partnered with Understanding Patient Data and Sciencewise to explore how people weigh up the benefits and disadvantages of health and social care data sharing for research.

The project was initiated months before the COVID-19 pandemic, however the programme will explore the potential change in public attitudes, sentiment and knowledge in result.

The programme will develop guidance to be published in 2021 to support a wide range of data sharing scenarios from across health and social care.

With demand for data growing, the organisation said it’s important to ensure that decision making is consistent and that the public can be confident their data is being used in the public interest. The guidance will assess how the public assess and weighs up the benefits from a range of scenarios to develop an understanding and level of what counts as ‘good enough’ use of data.

It will explore complex questions such as; when might data usage benefit some groups of people, but not others? What if it’s quite uncertain what the results of a piece of research might be? What if it won’t benefit the people whose data was used or their families, but instead people who are quite distant, perhaps in another country, or many years? How do these factors affect people’s attitudes towards whether there is enough public benefit to merit data being used?

Dame Fiona Caldicott, in a recent blog post, discussed the importance of data in the fight against COVID-19 and how information governance policies have adapted:

She said “The health and care system must now work together to manage the outbreak successfully: monitoring and responding to COVID-19 as effectively as possible. Data plays a vital role in this in so many ways.”

“From tracking the spread and transmission of the virus, to planning how best to manage resources, and, of course, in the provision of individuals’ care – each of these elements is shored up by the power of data.”

“Information sharing must be done differently to support the fight against COVID-19 and to protect citizens compared to ordinary times. Information may need to be shared more quickly and widely across organisations than normal, or different types of information may need to be collected and used.”

“We know from dialogue with the public, conducted by our organisation and others in the past, that there is strong support for the use of health and care data where there is a clear public benefit. People are generally altruistic about the use of their data and want it to be used to help others as long as there are appropriate safeguards in place. I understand that doing things differently can usher in uncertainty about what is and isn’t appropriate from a data sharing perspective; the worry may be that people will share too much or too little. So, we must make sure that we have the balance right to protect that admirable altruism.”

“What has become apparent is how well our information governance framework is able to flex in a time of public health emergency to serve as an enabler to the rapid sharing of information while maintaining proportionate safeguards.”

“It is with gratitude that in the thick of everything I have still heard colleagues cite the importance of protecting confidentiality. Practical steps are also being taken to ensure that trust is not undermined. For example, my panel and I have been pleased this week to support NHSX with the drafting of a template privacy notice, which will be sent out to NHS organisations next week to support them to tell patients and service users about what might be different in the handling of their health and care data during the outbreak. It is heartening to note that even at this unprecedented crisis, trust and confidentiality still matter.”

The dialogue workshops will take place across the country in autumn, with an aim to publish the guidance in spring 2021.