On Monday 11 March, the office of the National Data Guardian (NDG) convened at the Wellcome Trust in central London to celebrate the passing of the Health and Social Care (National Data Guardian) Act 2018. The act gave the role of the National Data Guardian a new status by putting it on a statutory footing. Tom Billins, Policy Analyst at Genetic Alliance UK, attended on behalf of Genetic Alliance UK.
The National Data Guardian, Dame Fiona Caldicott, is responsible for scrutinising and testing the safeguarding of health and social care data. Dame Fiona began her session by explaining that the new status of her role gives her the authority, credibility and independence necessary to ensure public trust in her and her office.
She went on to talk about the importance of public trust and listening to the public’s voice, stressing them as critical components of the NDG’s work. Feedback from the public makes it clear that they do trust the NHS and how it uses patient data, including for research, as long as they feel informed and consulted with.
The NDG’s priorities for the year were described as:
- to give patients access to and control of their data
- to encourage the use of patient data for innovative purposes
- to get the basics right and support organisations to understand their obligations.
Dame Fiona also emphasised the importance of safeguarding data while maximising its potential.
Professor Sir Jonathan Montgomery joined Dame Fiona in the next session by focusing on the importance of explaining what is being done with people’s data. Part of the challenge with explaining how data is used in healthcare is that the workings of the NHS are not well understood by the general public.
It was acknowledged by both Professor Montgomery and Dame Fiona that part of the process of engaging with and informing the public is to recognise that there are many perspectives and different levels of knowledge out there; some members of the public will know a lot more about a certain rare disease than many clinicians! It was noted that too many people in senior positions in the NHS think that informing the public is the same as engaging with them.
Asking a question from the audience, Vivienne Parry from Genomics England quoted findings from a recent Sciencewise dialogue which reported that the public are not resistant to private firms having access to patient data but are worried about those companies benefiting disproportionally from that data.
Ending her session, Dame Fiona said that her proudest achievement has been to convince ministers that the public can be engaged with effectively and that this has helped maintain public trust in the system.
Next up was Baroness Nicola Blackwood, Under Secretary of Health and Social Care. She explained that the sharing of patient data in an ethical manner for scientific progress isn’t a new thing and that established ethical standards need to be taken forward. Patient trust is vital to this. Both Dame Fiona’s work and the Information Commissioner’s Office’s ‘Your data matters’ campaign were cited as important contributions to increasing the public’s confidence in how their data is being used. Speaking on her personal experience of a diagnostic odyssey, Baroness Blackwood said she would like to see data sharing in the NHS advance, to avoid others having to go through the same thing.
Natalie Banner, of Understanding Patient Data, neatly summed up the day by stressing the need for simple language, for dynamic and evolving conversations, and for a shift towards a ‘how can we do this?’ attitude by bringing together a community of people to work towards a common goal.