Minutes National Data Opt-out Programme Advisory Group 21 February 2018 14:00 16:00 Park Plaza Sherlock Holmes London, 108 Baker Street, London, W1U 6LJ Attendees: Nigel Mathers (NM) Former Honorary Secretary of the Royal College of General Practitioners (Chair) Bill Davidson (BD) Helene Feger (HeF) John Carvel (JC) John Marsh (JM) Julie Flynn (JF) Lorraine Jackson (LJ) Louise Coleman (LC) Michael Chapman (MC) Nicola Perrin (NP) Patricia Wilkie (PW) Rachael Andrews (RA) Rachel Merrett (RM) Ralph Sullivan (RS) Shaun Griffin (SG) Tim Magor (TM) Joint Head of Policy, NHS Health Research Authority Director of Strategy, Communications and Engagement, Professional Records Standards Body Non-Executive Director - Dorset HealthCare University NHS Foundation Trust, National Data Guardian Office Senior Evidence Manager Data and Influencing, Macmillan Cancer Support Deputy Director, Data Policy, Department of Health and Social Care Policy Officer, Genetics Alliance UK Head of Cancer Intelligence and Impact, Cancer Research UK Head, Understanding Patient Data, Wellcome Trust President and Chairman, National Association for Patient Participation Project Manager Asthma Audit Development Project, Royal College of Physicians Head of Stakeholder Engagement, NHS England GP and RCGP Clinical Lead, Royal College of General Practitioners Head of Policy and Public Affairs, Association of Medical Research Charities Programme Head, National Data Opt-out Programme, NHS Digital 20180221 National Data Opt-out Programme Advisory Group Meeting Minutes Page 1 of 5
In Attendance: Anna Steere (AS) Heather Pinches (HP) Kyle Main (KM) Apologies: Aisling Burnand (AB) Alastair Cartwright (AC) Donna Kinnair (DK) Emily Travis (ET) Helena Feinstein (HF) Ian Turner (IT) Jacob Lant (JL) Katie Farrington (KF) Kirit Mistry (KM) Libby Morris (LM) Mark Golledge (MG) Megan Stodel (MS) Nick Venters (NV) Samantha Walker (SW) Simon Enright Susannah Strong (SS) Sylvia Bailey (SB) Victoria Chico (VC) Senior Strategic Communications Manager, Paperless 2020, NHS England Programme Manager, National Data Opt-out Programme, NHS Digital Policy Officer, Association of Medical Research Charities Chief Executive, Association of Medical Research Charities Director of Informatics at Leeds Clinical Commissioning Groups Director of Nursing Policy and Practice, Royal College of Nursing Head of Data Sharing and Information Governance, Department of Health and Social Care Chair of the Registered Nursing Home Association Head of Policy and Partnerships, Healthwatch Director of Primary Care, Digital and Data, Department of Health GP, Professional Records Standards Body Programme Manager Digital & Information, Health and Care Integration, Local Government Association Research and Policy Manager, Royal College of General Practitioners Domain J Clinical Lead, NHS Digital Director, Research and Policy Advisor and Deputy Chief Executive, Asthma UK, Richmond Group Director of Communications, NHS England Senior Communications Manager, NHS England Data Policy Advisor, NHS Health Research Authority Secretariat: Freya Stansfield (FS) Business Support Manager, NHS England 20180221 National Data Opt-out Programme Advisory Group Page 2 of 5
1. Welcome and introductions NM welcomed all those in attendance. 2. Chairman s update NM updated the group on recent activities: NM met the National Data Guardian (NDG) Dame Fiona Caldicott on 6 February 2018 to discuss key issues around the national data opt-out, including the GP assisted route and the use of the NHS number during the verification process. NM to meet the NDG again in a couple of months. The next ministerial Data Strategy Board meeting is due to take place on Tuesday 27 February 2018. Lord O Shaughnessy has agreed to attend the next Advisory Group meeting on Wednesday 21 March 2018. 3. Minutes and actions from 25 January 2018 NM asked for comments on the minutes of the 25 January 2018 meeting. Two corrections were requested: Page 4 section 4 - remove NP from the action Page 4 section 6 add note on the implications for GP practices Add suggestion to engage with privacy groups. Action 1: Advisory Group to consider any questions or discussion points they would like to raise with the Minister, and send suggestions to NM Carried forwards, to be discussed at 21 March 2018 meeting Action 2: Advisory Group to consider any questions or discussion points they would like to raise with Dame Fiona Caldicott, and sent suggestions to NM Action 3: Circulate a written update on wider programme communications to the Advisory Group. Action 4: Update NHS Digital website with revised delivery date, 25 May 2018 Action 5: Follow up on how to communicate with private agencies to reach locum doctors. RS has connections Action 6: Send thoughts on LPAs and proxy access in regard to setting a national data opt-out to Heather after the meeting Action 7: Send thoughts through on parental opt-outs to HP by close of play 7 February 2018 Action 8: NM asked for practical ways of increasing numbers of people that are able to 20180221 National Data Opt-out Programme Advisory Group Page 3 of 5
find their NHS number and bring to next meeting Action: FS to amend 25 January 2018 minutes as requested 4. Update on the National Data Opt-out Programme TM presented an update on the National Data Opt-out Programme, including an overview of the progress made since January and the immediate focus for each workstream. TM went into further detail on the on-line authentication process, which verifies users if they choose to register an opt-out preference on the digital service. The aim of the authentication process is to give the right level of security without too many steps or need to input too much personal information. User research suggested that the NHS number should be a mandatory field. The process is being further tested in the laboratory and in-context. The NHS app was discussed, and whether this should be used for informing and making national data opt-out choices. TM agreed to take an action to find out how this will be tested. TM provided an update on the latest programme risks and issues. NP made a request to add the forthcoming ministerial decision on the definition of data to the risk register. Clarification was sought on whether the communications materials will be ready for the beta testing. TM updated that draft communications products will be used in testing, and will ensure that the correct definition of data is used in the products in time for go-live. It was agreed to consider the draft communications products at the next Advisory Group meeting. Action: TM to investigate plans for testing the NHS app. Action: TM to add an item to consider the draft communications products at the next Advisory Group meeting Action: TM to add definition of data to the risk register 5. Wider communications update AS provided a verbal update on the wider communications piece which encompasses programmes in the Personalised Health and Care 2020 (PHC 2020) portfolio, including the National Data Opt-out Programme. The communications plan will go to the next ministerial Data Strategy Board meeting on Tuesday 27 February 2018. AS confirmed that the data communications plan will be shared with the Advisory Group once this has been approved. Action: AS to share the wider data communications plan with the Advisory Group once it has been approved 6. Policy update HP presented an update on pending Programme Board decisions on policy and current work in progress, including the development of an overarching policy document for the national data opt-out. 7. Scenario planning Members of the Advisory Group took part in an exercise to identify strategic risks in relation to the national data opt-out. In small groups, members grouped together the identified risks into key themes which they then relayed to the wider group. It was agreed to continue this exercise at the 21 March 2018 meeting, to discuss risk 20180221 National Data Opt-out Programme Advisory Group Page 4 of 5
mitigations. Action: FS to organise for the scenario planning excise notes to be written up 8. Patient Perspectives JM provided observations on the meeting. 9. Any Other Business NM thanked members for their attendance. Actions from 21 February 2018 meeting: 1. FS to amend 25 January 2018 minutes as requested 2. TM to investigate plans for testing the NHS app. 3. TM to add an item to consider the draft communications products at the next Advisory Group meeting 4. TM to add definition of data to the risk register 5. AS to share the wider data communications plan with the Advisory Group once it has been approved 6. FS to organise for the scenario planning excise notes to be written up Carried forwards from 25 January 2018 meeting: 1. Advisory Group to consider any questions or discussion points they would like to raise with the Minister, and send suggestions to NM 9. Date of Next Meeting The next Advisory Group meeting will take place on 21 March 2018, 10:00-12:30. Glossary of Abbreviations LPAs Lasting Powers of Attorney NDG National Data Guardian NHS National Health Service PCH 2020 Personalised Health and Care 2020 20180221 National Data Opt-out Programme Advisory Group Page 5 of 5