At this time of year, I often find myself thinking about Christmases past, remembering with fondness singing carols with my family and doing my best shepherd impression in a nativity play. The nativity story is something I've been thinking about in particular, especially the census which required Joseph, and his pregnant wife Mary, to travel to Bethlehem to be counted. Perhaps this has stuck with me because of my statistician father's fondness for demographics, but I also find it increasingly relevant today, working as I do to support information sharing, where the ultimate goal is improving outcomes for vulnerable people.
In Luke's gospel, we are told that the census is taking place to enable the Roman Emperor to levy the right amount of tax. Presumably, being counted for this purpose and having this information shared by local officials with the central Roman tax office, was something which Joseph was okay with. He was willing to travel cross-country in the winter to take part after all. However, if he had known that the same information would be used by King Herod later on to identify, and get rid of, all the 1 year old baby boys, I doubt he would have been so compliant.
Whilst this is rather an extreme example, it does highlight for me contemporary cultural issues we come across regularly in relation to information sharing, namely the importance of trust and transparency - two things which Dame Fiona Caldicott flagged up in her recent annual report (published 12 December 2017).
"It has been demonstrated regularly and repeatedly that no project, however worthy its aims will succeed, unless those holding, sharing and using data act in a way that inspires and retains public trust."
I was particularly pleased to see working to 'maintain public trust' listed as one of the National Data Guardian's (NDGs) priorities for 2018. Key to this will be the planned citizen jury, being delivered in partnership with Connected Health Cities (CHC) and Citizens Juries Community Interest Company (CIC), to explore consensus about:
- what patients' 'reasonable expectations' are regarding the use of their personal data; and
- how these expectations should influence and shape the way that data is shared to support both individuals’ direct care and purposes such as genetic testing and research.
The role of the new national opt-out in building (or re-building) public trust is also recognised in the report. Highlighting it as an opportunity for the government and NHS to show that they are listening to people's concerns and give the public a real choice about how their healthcare record is used for purposes other than direct care.
"We also need to offer the public a genuine choice. The opt-out provides the means to demonstrate to the public that their wishes are respected, and their concerns are understood and listened to. There should be no watering down of that option. We need to build trust carefully if the true benefits of sharing information are to be realised."
In order to build this trust carefully, effective communication about the national opt-out, and information sharing in general, will be needed soon, and over an extended period of time. This communication will also need to be targeted both directly at the public, but also at the frontline practitioners likely to be charged with explaining the opt-out to their service users. Through our work at the Centre, I've already had the opportunity to help shape and get involved with discussions about information sharing with members of the public at both a national level (through our involvement in the government's consultation on the last NDG review) and locally (through our work with CHC in the North East). So, my hope for 2018, is to see and be involved in more public engagement about information sharing.
I'm also hoping that Dame Fiona's annual report, and perhaps in some small way this blog, will build on this festive season of goodwill to all, and encourage you to play a part in gaining and keeping the public's trust in information sharing, by being clear about the purpose(s) for which information is being shared, the steps you're taking to make sure you stick to this, and the way in which people can exercise their information rights to provide another layer of control and oversight.