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I'm at the "@NDGoffice : celebrating, reflecting, looking ahead" event. I'm going to tweet under #NDGOffice
2/ First up is @natalie_banner highlighting the importance of #NDGOffice in ensuring that data can contribute to more effective health and health research within a trustworthy system
3/ Critically celebrating the fact that #NDGOffice has finally been put onto a statutory footing and @natalie_banner tracing back the 20 years of debate leading to this point
4/ she notes that the principles identified by Dame Fiona Caldicott in 1997 have really stood the test of time ncbi.nlm.nih.gov/pmc/articles/P… #NDGOffice
5/ She's highlighting the good work to engage the public and put the caldicott principles into practice, but that it's happening in silos. Having the National Data Guardian put onto a statutory footing is really important #NDGOffice
6/ Next up is Dame Fiona, statutory footing means support and guidance, rather than legal sanction and more regulation. #NDGOffice
7/ Statutory footing means that the role is totally independent guardian who is able to scrutinise and test the use and safeguarding of H&SC data #NDGOffice
8/ Listening to the public is absolutely critical to the work of #NDGOffice. This is important for building trust. Everything @NDGoffice hears from public is that they do trust the NHS and how uses data, including for research> be interested to understand how deep that trust is
9/ Notes that public wants to be consulted about the use of their data, and to be kept informed about its use. In #opengov week it's worth noting that this is important and one way the UK builds openness into decision-making without linking it clearly to this agenda #NDGOffice
10/ Year forward work plan. 1. give access and control to individual patients to their data; 2. Use of patient data in innovation (and public not necessarily aware of how this is happening); 3. Getting basics right and supporting organisations to understand obligations #NDGOffice
11/ and critical part to this last is the interaction of GDPR with the rest of the system; 4. safeguarding data; 5. thinking about the value of the data and working with public to secure this value without breaking the principles #NDGOffice
12/ Professor Jonathan Montgomery (ucl.ac.uk/laws/people/pr…) and Dame Fiona now reflecting on key themes emerging #NDGOffice
13/ Focusing now on the importance of the need to explain what is being done with people's data. Part of challenge is that public doesn't understand the health system and how it works, charging for treatment etc #NDGOffice
14/ this isn't patronising, why would public choose to understand such a complex system? > second this point #NDGOffice
15/ and a critical element of this is that staff find it hard to explain how data is used> effective engagement in such a broad area requires investment in staff engagement and support too #NDGOffice
16/ Dame Fiona notes that there are 60m people in the country. they have such a wide range of perspectives. We're always going to have to explain and engage - some are real experts, others not aware at all because never thought about it or had to worry about it #NDGOffice
17/ critically here picking up on the difference between informing the public vs consulting and engaging them> it's noteworthy that this is worth treating, don't see enough senior people fully understand the difference and word engagement used to cover both meanings #NDGOffice
18/ We don't yet know enough about why people are opting out, or at least some are. Dame Fiona always knew this would have to be revisited. #NDGOffice
19/ Into qus now. I asked about public support for use of data and willingness to consider its use for different purposes. Noted there are different publics, how broad and deep is support? And how well do those using sharing data understand parameters of public support #NDGOffice
20/ Dame fiona noted there's a big gap between those using data and public perspectives. #NDGOffice
21/ @vivienneparry noting findings from recent @sciencewise dialogue for @GenomicsEngland sciencewise.org.uk/2018/07/genome…. She notes that findings showing that public not resistant to private firms being involved, but.. #NDGOffice
22/ ... but there is concern about disproportionate benefit #NDGOffice
23/ now being asked about role of #NDGOffice in relation to publics who don't engage. Role is partly as advocate for public, but there will be different modes of acting depending on the issue
24/ Question noting that there are lots of organisations involved in the safeguarding of data. Where do the lines of governance lies. Dame Fiona noting MOUs between key actors outlining areas of expertise, and good comms and collaboration #NDGOffice
25/ GDPR is a particular challenge and is on the list for discussing with ICO #NDGOffice
26/ What's stopping sharing for research etc? Lack of public trust? Lack of trust between organisations wanting to share? Or who? Dame Fiona - all of the above, and most of these can be surmounted by working within the rules developed #NDGOffice
27/ Final question - what are you over your career most proud of? Convincing ministers that the public can be engaged effectively and this has helped maintain public trust in the system. #NDGOffice
28/ Next up is Baroness Blackwood, PPS in Department of H&SC. Data ethics and sharing aren't 21 Century issues, it's always been a problem, always tried to understand data for patient benefit #NDGOffice
29/ and origins of debates are found in the development of clinical trials - highlighting importance of H&SC data in the development of an effective care system #NDGOffice
30/ @natalie_banner summarises themes: We need to simplify language, tech, rules, principles etc; not going to be a one off conversation, but evolving and dynamic conversations, and problem is that the goal posts will shift, so how have conversation? #NDGOffice
31/ final theme: shift debate from the default being 'we can't' to 'how can we do this?' but focus on doing it in the right way for right reasons. And all this needs a community of people working together #NDGOffice
