, Central 5, 6 & 7, Manchester Central Agenda · 2016. 9. 8. · NHS England Dr Julia...

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NATIONAL INFORMATION BOARD

Leadership Summit Health and Care Innovation Expo 2016, Central 5, 6 & 7, Manchester Central

Agenda

Thursday 8 September 2016 10:00–12:30

plus Public Q&A Session 12:30–13:15

1. Welcome and introductions Chair

2. Minutes of Leadership meeting held on 20 April 2016 and matters arising Paper Ref: NIB 0908-001

Chair

3. Chair’s overview Chair

4. Governance arrangements Tamara Finkelstein

5. Minister’s keynote address Nicola Blackwood MP

BEST PRACTICE

6. Digitisation in health and care – benefits in practice for clinicians and patients

- Dr Mark Westwood to give overview of benefits of digitalisation to clinical staff

- Hugh Huddy to provide his story of the benefits to patients of using Patient Online

Dr Mark Westwood, GP and GP IT Lead for North Tyneside CCG

Hugh Huddy, patient

DELIVERY/ASSURANCE

7. Paperless 2020 reporting Paper Ref: NIB 0908-002a Paper Ref: NIB 0908-002b

Andy Williams

POLICY/STRATEGY

8. Clinical vision Paper Ref: NIB 0908-003

Martin Severs

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9. Patient, carers and service users vision Paper Ref: NIB 0908-004

Neil Tester

10. NIB Working Group updates Paper Ref: NIB 0908-005

- Learning from Local - Analytical Capacity and Capability - Horizon scanning

John Newton

11. Microsoft – Future technologies for health and care

John Doyle Leslie Sistla Paul Reid

12. National Data Guardian update - Review of data security, consent and opt-outs - Consultation

Dame Fiona Caldicott Katie Farrington

13. Professor Keith McNeil, Chief Clinical Information Officer, NHS England and new Chair of the NIB

Keith McNeil

14. Concluding remarks Chair

15. Any Other Business Chair

Date of next Working Group meeting: 11 October 2016

Date of next Leadership Summit: 6 December 2016

Close meeting and open for public Q&A 12:30–13:15

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PAPER: NIB 0908-001 AGENDA ITEM 2: Minutes of Leadership meeting held on 20 April 2016 and

matters arising PURPOSE: For approval

National Information Board

Leadership Summit

10:00 – 12:30, Wednesday 20 April 2016

UK e-Health Week, NHS Plenary Room, Olympia, London

Notes and Actions

Attendees Chair Prof John Newton – Chief Knowledge Officer, PHE The Academic Health Science Networks Guy Boersma – Managing Director, Kent Surrey Sussex AHSN Care Quality Commission Emma Rourke – Director of Intelligence Department of Health Tamara Finkelstein – Chief Operating Officer and Informatics Accountable Officer Katie Farrington – Director of Digital and Data Policy Peter Knight – Deputy Director of Research Information & Intelligence Simone Bayes – Deputy Director of Data & Information Strategy Charlotte Buckley – Deputy Director of Local Insight & Resilience Health and Social Care Information Centre Andy Williams – Chief Executive Kingsley Manning – Chair Health Education England Prof Nicki Latham – Executive Director of Performance and Development James Freed – Chief Information Officer Health Research Authority Stephen Robinson – Corporate Secretary Healthwatch England Neil Tester – Director of Policy & Communications

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Human Fertilisation & Embryology Authority Peter Thompson – Chief Executive Human Tissue Authority Jamie Munro – Head of Business Technology Independent Cancer Taskforce Michael Chapman – Head of Cancer Intelligence & Impact, Cancer Research UK Independent NIB Members Alex Kafetz Dr Jo Bibby Dr Justin Whatling Mat Campbell-Hill Sam Smith Local CIO Council Dylan Roberts – Chief Digital Officer Local Government Association Mark Golledge – Programme Manager – Health and Care Informatics Macmillan Cancer Support – representing Richmond Group of Charities Lynda Thomas – Chief Executive Julie Flynn – Strategic Data and Influencing Lead Medicines and Healthcare products Regulatory Agency Dr Janet Valentine – Director of Clinical Practice Research Datalink National Data Guardian’s Panel Dame Fiona Caldicott – National Data Guardian NHS Business Services Authority Nina Monckton – Head of Information Services NHS England Beverley Bryant – Director of Digital Technology, Patients & Information Dr Paul Rice – Head of Technology Strategy NHS Improvement Peter Sinden – Chief Information Officer Neil Stutchbury – Director of Business Engagement NHS Litigation Authority Helen Vernon – Chief Executive Public Health England Prof Peter Bradley – Director of Knowledge and Intelligence Strategic Clinical Reference Group Prof Martin Severs – Deputy Chair Prof Jonathan Kay – Professor of Health Informatics, Farr Institute, University College London and Royal College of Physicians

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UK Statistics Authority Ed Humpherson – Director General for Regulation

Additional Attendees Department of Health George Freeman MP – Minister for Life Sciences Amanda Gordon – Information Legislation Policy Manager Jean King – accompanying Minister for Life Sciences Health and Social Care Information Centre Rob Shaw – Director of Operations & Assurance Services & SIRO Richard Clay – Programme Head, Informatics Portfolio Management Office Tom Denwood – National Provider Support and Integration Director Dermot Kehoe – Assistant Director, Communications & External Relations NHS England Dr Julia Maier-McAlpine – Strategic Programme Manager, Five Year Forward View Deborah El-Sayed – Director of Digital and Multi-Channel Development Dr Arvind Madan – Director of Primary Care Dr Ossie Rawstorne – National Medical Advisor for NHS 111 Dr Robert Varnam – Head of General Practice Development Helen Rowntree – Head of Digital Services NIB Secretariat Tracy Dibdin Gemma Riley Peter Williams NQB Secretariat Christina Cornwell, CQC Strategic Clinical Reference Group Peter Thomson – National Medical Director’s Clinical Fellow

Apologies The Academic Health Science Networks Mike Burrows – Managing Director, Greater Manchester AHSN Association of Directors of Adult Social Services Terry Dafter – Associate Director of Adult Social Services, Stockport Cabinet Office Liam Maxwell – Chief Technology Officer Anni Hartley-Walder – Deputy Director Operations Care Quality Commission David Behan – Chief Executive

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Dr Paul Bate – Executive Director of Strategy & Intelligence Department of Health Dame Una O’Brien – Permanent Secretary Prof Dame Sally Davies – Chief Medical Officer and Chief Scientific Advisor Jon Rouse – Director General of Social Care, Local Government & Care Partnerships David Williams – Director General of Finance, Commercial & NHS Tim Donohoe – Director of Informatics Delivery Management Andrew Baigent – Director of Group Financial Management Cameron Robson – Deputy Director of Information Policy & Strategy Andy McKinlay – Deputy Director of Group Financial Management Government Office for Science Prof Sir Mark Walport – Chief Scientific Advisor to HM Government and Head of the Government Office for Science Health and Social Care Information Centre Linda Whalley – Director of Strategy & Policy Health Research Authority Dr Janet Wisely – Chief Executive Human Fertilisation & Embryology Authority Nick Jones – Director of Compliance & Information Human Tissue Authority Allan Marriott-Smith – Chief Executive Independent Cancer Taskforce Sir Harpal S Kumar – Chair Independent NIB Members Annie Whelan Local Government Association Rob Tinlin – Chief Executive, Southend-on-Sea Borough Council Medicines and Healthcare products Regulatory Agency Dr Ian Hudson – Chief Executive National Institute for Health & Care Excellence Sir Andrew Dillon – Chief Executive Alexia Tonnel – Director of Evidence Resources National Maternity Review Baroness Julia Cumberlege – Chair NHS Blood and Transplant Ian Trenholm – Chief Executive Aaron Powell – Chief Digital Officer NHS Business Services Authority Nick Scholte – Chief Executive

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NHS England Simon Stevens – Chief Executive Prof Sir Bruce Keogh – National Medical Director Karen Wheeler – National Director: Transformation & Corporate Operations NHS Improvement Jim Mackey – Chief Executive Bob Alexander – Executive Director of Resources/Deputy Chief Executive Iain Wallen – Director of Information & Analytics NHS Litigation Authority Joanne Evans – Director of Finance & Corporate Planning Public Health England Duncan Selbie – Chief Executive Julian Flowers – Head of Data Science Strategic Clinical Reference Group Clare Marx – Chair UK Statistics Authority/Office for National Statistics John Pullinger – National Statistician, UKSA Glen Watson – Deputy National Statistician, ONS

Apologies – Additional Attendees Department of Health Dan Markson – Finance & Efficiency Board Lead Kate Lillywhite – Finance & Efficiency Board Health and Social Care Information Centre Dermot Ryan – Director of the Health and Social Care Network (HSCN) programme NHS England Noel Gordon – Non-Executive Director Michael Macdonnell – Director of Strategy Group Ros Roughton – Director of NHS Commissioning NHS Improvement Paul Stroner – Head of Business Intelligence NIB Secretariat Jane Pawson NQB Secretariat Lauren Hughes, NHS England

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Item

1. Welcome and

introductions

The Chair introduced himself as Chief Knowledge Officer at Public Health England (PHE) and Interim Chair of the National Information Board (NIB), as had been announced at the previous meeting in December. The Chair welcomed members to the meeting, which was being livestreamed with a speech-to-text facility, and attendees of the wider conference. The Chair explained that to be transparent the Board meeting would take place, as usual, with NIB members followed by an open question and answer session with members of the public. The Chair added that all Board papers for the meeting were public and would be available on the NIB GOV.UK website after the meeting: https://www.gov.uk/government/organisations/national-information-board The Chair welcomed the Chief Operating Officer of the Department of Health (DH), attending the meeting for the first time having taken over the Informatics Assurance Officer (IAO) role, following her predecessor’s secondment to the Cabinet Office. The Chair noted the letter he wrote to the Secretary of State (SofS) on the transparency agenda, which included My NHS and its role in transparency, which was shared with members along with the meeting papers. It was a formal duty of the NIB to report to SofS annually on the transparency agenda.

2. Minutes of Leadership

meeting held on 8 December 2015 and matters arising

Paper Ref: NIB 0420-001

The minutes of the last meeting were agreed.

3. Chair’s Overview

The Chair thanked the Permanent Secretary for inviting him to take on the role of Interim Chair, which he considered to be a great privilege. The Chair thanked his predecessor, Tim Kelsey, for his leadership of the NIB and all he had achieved during his time as Chair. The Chair recognised that whilst there had been a significant amount of progress since the December Leadership Summit there were still many challenges ahead. The Chair reflected on the significant progress since the publication of the NIB’s strategy Personalised Health and Care 2020 (PHC2020) in November 2014. There had been an incredible amount of work carried out by NIB members to develop the proposals set out in the

https://www.gov.uk/government/organisations/national-information-board

https://www.gov.uk/government/organisations/national-information-board

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strategy into domains for delivery. The NIB had received a very good outcome from the Spending Review, securing the funding to drive forward the programmes that would deliver the strategy. Particular progress had been around converting the NIB work stream roadmaps into a set of delivery domains. The proposed domains were presented to the NIB membership at a Special Working Session in March, which was an opportunity for NIB members to comment on the emerging plans. Those developing the plans were grateful for the opportunity to get members’ input to help shape the plans. Work was continuing behind the scenes to integrate the new and existing delivery programmes into the new domains. The Chair thought the NIB had three fundamental roles going forward:

Delivery assurance of the domains for delivery and programmes.

To continue to make connections between local and national, and across all different organisations and different sectors.

To keep a forward look in terms of horizon scanning. The Chair set out some of the work the NIB would look at over the summer. This included:

The importance of identifying and capitalising on good processes and practices locally to see how that could support and help to inform the national delivery programmes

Working with the Five Year Forward View (FYFV) Patients and Communities Board and Healthwatch England to produce a patient vision paper which would help to articulate the benefits of the delivery portfolio for patients, carers and service users. This would accompany the clinical vision paper that members would hear about later in the agenda.

In order to ensure the work of the NIB is well connected with the FYFV, the Chair announced he and the IAO would visit the FYFV Board on 16 May to discuss the NIB’s work

The Chair thanked everyone for the significant amount of progress that had been made so far and thanked the NIB Secretariat team for their excellent support. The Chair gave special thanks to Jane Pawson, who had been the helmsman of the Secretariat of NIB since the start and had now left to work for the Home Office.

4. Minister’s keynote address

The Chair welcomed the Minister for Life Sciences, who gave the keynote address. The Minister acknowledged the challenges NIB faced but thought

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there was genuine international excitement around the world about what the NIB were doing. He reported he was leading a piece of work within the EU on data and interoperability to ensure the EU is learning from the UK and how the UK in turn could harness the power of the EU market. The Minister thanked the Interim Chair for his work and leadership of the NIB. He thanked the former Chair, Tim Kelsey, for his previous leadership of the NIB as a forum where organisations across the health and care system had come together to confront the difficult technology and data issues facing the system. He recognised the quality of the work of the NIB and the progress that had been made. He reiterated his continuing support moving forward. The Minister recognised the important role the NIB played in securing the £4.2 billion funding in the public Spending Review round and that the challenge would now be on implementation and delivery. The Minister highlighted three things the NIB did and should continue to do:

The oversight role should not be underestimated. The NIB takes responsibility, looks at progress and risk and is honest about delays. It is essential that projects of this scale have a formal and robust oversight role.

Showcasing best practice was an important role for the NIB for example, Genomics England (GEL) carried out a particularly successful communications campaign which made a real impact on securing patient support and also winning support for research and the use of data in research.

Actively integrating with the FYFV and with the DH Shared Delivery Plan was also key to ensuring the players in the UK health economy were all trying to achieve the same things.

The Minister highlighted areas of progress, particularly the following:

The NHS e-Referral Service: most people were not aware of it as they travelled around the UK, it is an extraordinary achievement.

The Electronic Prescribing Service: this drives accuracy, cutting out prescribing mistakes and generating data that feeds back into intelligent treatment regimes.

The NHS Spine: the NHS handles more emails than the whole of the Pentagon. This is a phenomenal national infrastructure which needs to be better recognised in communications.

The Minister highlighted the important and serious issue of public trust and confidence. The role of the National Data Guardian, Dame Fiona Caldicott and her team, had been established to ensure there was an independent guardian with a statutory role to ensure the security standards put in place were ones in which the public and

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patients could have confidence in and that ensured the consent model was patient and user-friendly. The Minister confirmed that Secretary of State had asked Professor Robert Wachter to lead a review of the implementation of information technology in the NHS in October 2015, with a particular focus on the introduction of clinical systems, including electronic health records, in the acute sector.

The Minister announced that from 1 August 2016 the Health and Social Care Information Centre (HSCIC) would change its name to ‘NHS Digital’. Noel Gordon had been appointed as the new Chair. The Minister thanked Kingsley Manning for his leadership and dedication as Chair. The Minister reiterated the importance of clinicians and patients and in ensuring they were at the heart of the NIB agenda. The Strategic Clinical Reference Group (SCRG) played an important role in bringing in clinician voice. Moving forward, there needed to be a better focus on communications and getting key messages across to patients that a 21st Century healthcare model requires patients who are empowered to make choices, take more responsibility and have access to information to enable them to be active healthcare citizens. The Minister highlighted the importance of the Digital Maturity Self-Assessment which allows Clinical Commissioning Groups (CCGs) to track their own digital maturity and their progress across the country. He recognised the progress made by the Director of Digital Technology, Patients & Information and all the team supporting her at NHS England. The target of having 90% of CCGs on the Digital Maturity Self-Assessment by the spring was met. There was now a strong digital benchmark – and a map – to help drive up transparency of progress, identify best practice and inspire organisations to continue to achieve over the next few years. In June, the digital roadmaps would be published. The Minister recognised the progress made in relation to the 100,000 Genomes Project. The potential was considerable – genomic technologies integrated into healthcare could change current thinking about how rare disease and cancer could be treated. Data and informatics were key to delivering the project and realising the benefits. The 2020 vision – transitioning from the project to embedding genomics in routine care, was currently being developed. The Minister reported that NHS England and DH had launched several test beds which would harness information to change care pathways. These would accelerate progress towards the FYFV and look at whether smart, digital technologies and remote diagnostics could help particular chronic disease areas to reduce unnecessary hospital admissions.

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The Minister highlighted future projects such as the NIB’s Annual Report which was set to be published over the summer. The report would reflect back work on achieved by the NIB. The Accelerated Access Review would look at device and diagnostics and tangible mechanisms by which digital technologies could be accelerated. The Minister reflected that five years ago he and the Prime Minister set out the life sciences strategy. It was a ten year strategy which went beyond the convenient envelope of one Parliament. GEL was the flagship programme of the first five years. Genomics and informatics should be used to support a new partnership with industry to work on precision medicines and on tackling the real pressure on drugs budgets from increasing expensive drugs. Moving forward there would be a focus on digital engagement and ensuring technologies for patient engagement are harnessed. The voice of patients was crucial for consent over data and insight on care pathway transformation. The key would be to find the right platforms that provide patient voice and consent. In closing, the Minister asked NIB members to think about national interoperability, about how disease-based and place-based leaders could be incentivised, encouraged and supported to harness interoperability. The NIB needs to create the interoperability platform and the common standard, drawing from local early adopters and clinical leads. The challenge for the NIB would be to combine national interoperability with the local and the disease-based leadership. The Minister thanked NIB members and all those involved in driving forward such an important agenda that was highly valued in Government. The NIB must now ensure it brings patients and the public along in what is increasingly being viewed as a noble endeavour that really drives UK leadership and NHS leadership into 21st century healthcare.

5. National Data Guardian

review update

The Chair invited the National Data Guardian (NDG) to provide an update on the NDG review. The NDG reported that publication of her report had been delayed. This would allow the NDG Panel more time to progress feedback from the public, healthcare professions and all of the stakeholders on the proposed data security and consent opt-out model. The NDG review originated from SofS’s request in September 2015 to for the NDG to work on a single, simple consent opt-out model for the public to consider in regards to choices about the use of their health and care data. She was also asked to work with the Care Quality Commission (CQC) on standards for data security across healthcare. The report would be based on evidence after listening to a wide range of stakeholders including patients, service users and the public.

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Feedback so far highlighted that in relation to data security there was a lot of good practice across the system with many organisations more concerned about data security than before. However there were still issues around people, processes and technology. The requirement from SofS to develop simple and consistent standards was challenging but it was these standards that would enable organisations and practices to ensure they were doing all they possibly could to safeguard the security of data. In terms of the review of consent and opt-out model there was a clear need to ensure the public had the right information about how the health and care system works. This would help them to understand how their health and care data could be used and that it would be anonymised, secure and they had the opportunity to opt-out. The better the public understood, the more they would be empowered to make their own choices about their health and social care data. The Director of Digital and Data Policy at DH advised that in terms of next steps there would be further consultation and further testing with key stakeholders including the public and patients and an ongoing continuing conversation about the benefits of sharing data as a way of supporting trust. There was a significant role for the NIB in leading that process and engaging with that dialogue. DH was looking particularly at data security standards and how best to embed them in CQC inspections and in standard NHS England contracts. The DH was working closely with the Chief Executive’s team at the Health and Social Care Information Centre (HSCIC), particularly around the Information Governance toolkit, which would need to change in light of the NDG’s work.

6. Forward look for the NIB

work programme Paper Ref: NIB 0420-002 Paper Ref: NIB 0420-003

The Chair presented the paper ‘Forward look for the NIB work programme: Priorities paper’ which put forward a proposal on identifying the key new priorities for the NIB and how these should be taken forward. NIB members agreed the approach and approved the paper. The Chair invited the Deputy Chair of the SCRG, who was also Interim Director of Information & Analytics and Lead Clinician (Caldicott Guardian) at HSCIC, to present his paper on the clinical vision. The Deputy Chair introduced his paper ‘Clinical Work 2020: A document in evolution’ on the clinical vision. He thanked the Chair of the SCRG, who was also President of the Royal College of Surgeons of England, for her vision and leadership in driving this forward, and the National Medical Director’s Clinical Fellow for their support. The Chair invited questions from NIB members on both papers.

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The Chief Executive of Macmillan Cancer Support, representing the Richmond Group of Charities, was pleased with the piece of work because it felt very important to engage clinicians. She wondered what the plan was to link up with the Wachter review as a lot of work had been done in this area. Jo Bibby, NIB Independent Member, thought there was a need to engage the younger section of the workforce in the digital strategy as generally those are already the most digitally aware. Digital technology and communication was already a part of their daily lives with the rise of the smartphone and social media. The Deputy Chair of the SCRG responded, saying that the clinical vision was linking into the Wachter report through the Chair of the SCRG, who was liaising with the team taking the report forward. The team would receive a copy of the clinical vision paper. In terms of younger people, this was a key point. The SCRG, working through their Clinical Fellow, and each of the formal organisations, had been tasked with communicating to all age groups.

7. National Information

Board Annual Report Paper Ref: NIB 0420-004

The Chair introduced the Deputy Director of Data & Information Strategy at DH to present the latest draft of the NIB Annual Report to seek members’ input, noting that members had already seen the review in an earlier draft. The Deputy Director of Data & Information Strategy took the group through the report. She thanked those that had contributed and reiterated that the aim of the report was to report on work achieved to date, describe next steps and to encourage engagement with the digital agenda going forward. The Chair invited members to ask any questions or make any observations; however there were none at this stage.

8. Personalised Health and

Care 2020 portfolio

The Chair introduced the Chief Executive of HSCIC and the Director of Digital Technology, Patients & Information at NHS England, who would present the work carried out so far on the planning of the portfolio and the development of the new domains – plus the output of the workshops. He acknowledged the enormous amount of work that had been undertaken and congratulated them both for driving this forward. The Chief Executive commented on the change of name from HSCIC to NHS Digital and its new subtitle ‘NHS Digital: Information and technology for better health and care’, which, particularly in the context of the work it would be doing, was a much better description of its remit as an organisation. He reported that the HSCIC had tested the new name, particularly with the younger age group, and found the name communicated the purpose, remit and future vision well.

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The Chief Executive took NIB members through the first part of the presentation which introduced each of the domains for delivery, and then handed over to the Director, who took NIB members through more detail at programme level. The Chair invited questions to the Director or the Chief Executive. Jo Bibby, NIB Independent Member, in reference to the Self-care and Prevention domain, said self-care wasn’t always understood to be self-management – they were distinct things. The word ‘self-care’ didn’t quite reflect the full range in which people could take responsibility for managing their own care. Additionally, the description of the rationale being to reduce pressure on frontline services didn’t come across as a particularly compelling reason for doing so from somebody as a service user, which reinforces the need to have some of this articulated from the perspective of people using the services. The Chair responded that each of the domains was a start in terms of identifying the requirement which was at that point built around the current programmes. There was not an assumption that the programmes under each domain were necessarily fulfilling everything that people wanted in that domain. The Chair noted there was no attempt to make these a comprehensive list, and the challenge was for those who were leading those domains to engage with NIB members as well people outside the NIB with a legitimate view on this. This was a beginning, it was not the definitive view and that was why the ongoing involvement with the domains was useful.

9. Widening digital

participation:

recommendations for

action (update)


The Chair introduced the National Provider Support and Integration Director at HSCIC to provide an update on progress of the Widening Digital Support programme which included a video from Baroness Martha Lane Fox. The Director took NIB members through the presentation and then introduced Baroness Lane Fox’s video about her visit to South London and Maudsley NHS Foundation Trust. The Director handed over to the Head of Digital Services at NHS England who talked NIB members through the remainder of the presentation around the ‘reaching the furthest first’ recommendation. Mat Campbell-Hill, NIB Independent Member, felt it was not clear whether there was any clinical research supporting the claim that free WiFi in hospitals enabled patients to return home earlier – good WiFi and internet connectivity at home would enable patients to go home earlier. Clinicians were able to contact them and they could have face-to-face consultations from home. He noted that by 2019, it was expected there would be a 5G network available, so it was a concern that a vast amount of money could be spent on putting in a system that would not be needed in the near future.

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Director of Knowledge and Intelligence, PHE thought the point being made was around equality of access to digital technology across society and the people who were most likely not to have access were the most likely to use the services. The National Provider Support and Integration Director, HSCIC responded saying it was possible that 5G might be appropriate very quickly for a number of hospitals but this may not be the case for more remote GP practices who may be able to benefit. He said it would be interesting to see the peer reviewed academic research – if it existed. In terms of cost, it would be an incremental cost, building on existing infrastructure. The case which Baroness Lane Fox put forward was compelling and should be progressed. He invited NIB members to join the Programme Board and provide challenge to them at every step along the journey.

10. How will our plans for

information and

technology (or PHC2020)

support and enable the

Five Year Forward View

The Chair handed over to the Director of Digital Technology, Patients & Information at NHS England to introduce the next item about how the delivery programmes were supporting the FYFV. The Director presented the FYFV slide pack to the NIB members. The Director handed over to the Head of General Practice Development at NHS England, who took the group through the slides relating to the specifics of Transforming General Practice. The Head of General Practice Development handed over to the National Medical Advisor for NHS 111 who took the group through the FYFV Urgent Care presentation.

11. Digital Maturity self-

assessment


The Chair noted that, due to lack of time, the Head of Technology Strategy at NHS England had agreed not to present his paper on the Digital Maturity self-assessment. The Chair apologised to the Head of Technology Strategy for dropping this item from the agenda but noted that he had provided an excellent paper, which members of the public could access.

12. Informatics Accountable

Officer – summary/overview response

The Chair invited the IAO to give a summary. The IAO thanked the Chair and expressed her pleasure to have taken on the role of the IAO from her predecessor, Will Cavendish. The IAO noted that previously, the DH Permanent Secretary, Dame Una O’Brien, joined these meetings but since her departure from the DH there was a gap before her successor, Chris Wormald, took up his post. The IAO understood that the new Permanent Secretary was aware of the NIB and was keen to join these Summits and learn more about the work of the NIB in future. The IAO said it had been a real privilege to sit through the

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presentations and discussions given today. The work the NIB had done on delivering the strategy set out in PHC2020 had been significant, as well as underpinning the Spending Review. The vision the NIB had created built a strong connection as to what technology could do to transform health and care. It was that connection that would help to deliver the vision in the FYFV, the vision that the DH had set out in the shared delivery plan for the system and the transformation plans that were being developed in the different local footprints across the country. The domains and programmes for delivery would help take this forward. The NIB had highlighted how information and technology would help to drive the transformational changes needed. It also set out the type of environment in which it could be successful, particularly around public trust and the work the NDG and her team are doing on data security and consent, and the work being carried out around widening digital participation. Leadership is another key part of the environment, particularly clinical leadership and it was reassuring to hear about the work around the clinical vision. The forward-looking role of the NIB and its intention to bring wisdom and experience into implementation and delivery is essential. Looking at the widest definition of health and care, beyond the NHS, beyond institutions into public health, personal health and social care is essential work which the NIB is currently doing and will continue to do on behalf of DH and its arm’s length bodies. The IAO thanked the Interim Chair for his leadership.

13. Concluding remarks

The Chair thanked the IAO for her response. The Chair thanked all the speakers and presenters, in particular all the members for their contributions to the meeting.

14. Any Other Business

No other business was discussed. The Chair ended the Board meeting and handed over to Jo Bibby to chair the public question and answer session.

15. Dates of next meetings

Date of next Working Group meeting: 17 May 2016 Date of next Leadership Summit: 8 September 2016

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PAPER REF: NIB 0908-002a

AGENDA ITEM 7: Paperless 2020 reporting PURPOSE: This paper provides the National Information Board (NIB) with

an update on the Paperless 2020 portfolio of programmes, which were announced at the Leadership Summit in April 2016.

ISSUES FOR INFORMATION The paper provides an update on:

the background and evolution of “Paperless 2020”;

the structure of the portfolio;

the governance arrangements;

the progress made since April 2016 including the outcome of a series of reviews held in July 2016;

the key dependencies across the programmes; and

the forward delivery plan. NEXT STEPS: The paper is for information and is intended to fulfil NIB’s oversight role. It is anticipated that delivery progress updates will be provided to future meetings of the NIB.

Copyright © 2016 Health and Social Care Information Centre. The Health and Social Care Information Centre is a non-departmental body created by statute, also known as NHS Digital.

Paper Ref: NIB 0908-002b

“Paperless 2020”

Delivery Update

September 2016


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Copyright © 2016 Health and Social Care Information Centre.

Contents

Purpose 21

Background 21

Portfolio Structure 21

Governance 22

Tracking Delivery Progress: “Deep Dive” Checkpoint Reviews 22

Progress Since April 2016 23

Portfolio Scope and Composition 23

Financial Re-baselining 23

Interdependencies/Scope 24

Delivery Plans 24

Controls and Reporting 25

Annex 26


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Purpose This paper provides the National Information Board (NIB) with an update on the Paperless 2020 portfolio of programmes, which were announced at the NIB Leadership Summit in April 2016.

This paper outlines the progress made since then and provides further details on the programmes comprising the portfolio, an overview on how they will be delivered and measures being taken to assure delivery.

This paper is intended to help fulfil NIB’s oversight role.

Background Personalised Health and Care: A Framework for Action was published in November 2014 and was elaborated into a set of requirements by the eight NIB workstreams, which culminated in the publication of the workstream roadmaps (in June and September 2015). This set of requirements was translated into a proposed delivery portfolio during the Summer of 2015 and that was used to inform the health and care submission to the Spending Review that Autumn.

The subsequent financial settlement from the Spending Review required a review of our plans and priorities for transforming health and care through technology and a further period of intensive planning took place during February and March 2016. This involved representatives from NHS Digital, NHS England, the Department of Health and other Arms Length Bodies including CQC and Monitor.

In April 2016 we announced the 33 programmes, organised into 10 business domains, which we have collectively termed “Paperless 2020”. This portfolio translates our ambition and objectives into a set of business led delivery programmes.

The overall composition of “Paperless 2020” was presented to the Secretary of State on the 4th April 2016 and announced at the NIB Leadership Summit on 20th April 2016.

Portfolio Structure We have organised the programmes into a series of ten domains, related to the Five Year Forward View, in order to link technology and information to the transformation of the way care is delivered. We have appointed a Domain Business Sponsor to ensure the planned outcomes remain relevant to the needs of the health and care system, especially during periods of change.

The Domain Business Sponsor is a key leadership role and will work with the Senior Responsible Owners (SRO) and delivery teams to represent the needs of the health and care system and ensure that the programme outcomes remain relevant.


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Governance We intend to appoint Senior Responsible Owners at the domain level for each of the Domains, to lead and drive the work in the domains. The SROs will be accountable for delivery progress across the domain and will play a lead role in shaping and leading the necessary business change. This allows the SRO to consider the transformation of health and care for the domain resulting from the collective delivery of the multiple programmes within that domain.

NHS Digital has assigned delivery ownership of each Domain to a member of the NHS Digital Executive Management Team and appointed Programme Directors/Programme Heads to lead the programmes. The NHS Digital Executives will work closely with the Domain Business Sponsors and Senior Responsible Owners to define our delivery approach and ensure delivery is on track.

NHS Digital is mobilising resources to deliver the new programmes. We have examined our existing initiatives and delivery plans and are in the process of assigning appropriately skilled resources to the new programme teams, as our delivery plans are being developed and transitioning from the old to the new portfolio.

We understand the critical importance of clinical input throughout the lifecycle of a change and transformation programme but this is vital during the design and initiation stages. NHS Digital is aligning clinical resources to the Domains and Programmes within Paperless 2020 at this early stage of delivery to make sure clinicians are not just represented but have an active voice to shape both the outcomes which will support the transformation of care and the way the programme will be delivered.

We are working closely with the Strategic Clinical Reference Group as they develop the clinical priorities and requirements which will allow us to achieve the maximum clinical benefit from Paperless 2020. As the clinical requirements evolve we will map the delivery of these to the relevant Domains and Programmes. We will continue to work with the Strategic Clinical Reference Group to track delivery progress.

Tracking Delivery Progress: “Deep Dive” Checkpoint Reviews Having identified and announced the key leadership roles responsible for delivery (including the Domain Business Sponsors, Senior Responsible Owners and Programme Directors/Programme Heads), we held a series of “Deep Dive” reviews; one per domain in July 2016.

The purpose of the sessions was to ensure complete alignment between the Domain Business Owners, Senior Responsible Owners and Programme Directors/Heads during the crucial “start-up” period. Each Domain was asked to present their long term vision, outline the scope of the programmes within their domain and provide an update on delivery.

The reviews were conducted by a “core” team” which included representatives from across the system including Andy Williams, Beverley Bryant and Rob Shaw (from NHS Digital), Tim Donohoe (from the Department of Health), Keith McNeil, Juliet


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Bauer and Ronan O’Connor (from NHS England) along with representatives from the Infrastructure and Projects Authority.

These sessions acted as a checkpoint on progress and enabled us to understand the cross-cutting issues facing the programmes. It also consolidated an understanding and agreement of scope between the Domain Business Sponsor, Senior Responsible Owner and the Programme Directors/ Programme Heads.

Progress Since April 2016

Portfolio Scope and Composition

During the Deep Dives sessions a number of proposals were made to amend the composition of the domains and the component programmes which they comprise. For example we believe the Personal Health Record programme better aligns to Domain A (Self Care and Prevention) than where it currently resides (within Domain D- Integrated Care).

We are currently assessing the impacts of all these changes and we will progress this through a change control mechanism which we will agree between NHS Digital, NHS England and the DH to ensure any changes from the baseline are appropriately tracked with appropriate governance. We expect to be able to communicate these agreed changes in late September 2016.

Financial Re-baselining

The individual programmes are separate entities which will need separate financial justification and approvals before any major investment decisions are made. The overall portfolio finances are therefore inherently integrated and tightly coupled. In our planning work earlier this year we had to balance the priorities for delivery with the need to ensure overall affordability based on the Spending Review settlement. Affordability considerations required the portfolio finances to balance within each financial year and separately by both revenue and capital spend, over the next five years.

Since April 2016 further work has been undertaken on the cost profile of delivering the portfolio. This has identified some changes to the original position. Some programmes are seeking additional funding (for example to allow earlier delivery of benefits, such as in the case of electronic referrals) whereas others have reflected on the profile of spend over the five years and the revenue-capital split.

We have considered the changes identified by the programme teams and have investigated areas of forecast change in a series of financial “Star Chamber” reviews. These reviews tested the validity of the proposals and any resulting anomalies. We also had some areas of underspend from existing activity to balance against these proposed changes. As a result we have achieved a balanced portfolio. We will track delivery progress against this revised position and if we need to revisit this due to future changes this may require some decisions about sequencing and priority to be taken.


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Interdependencies/Scope

We have already identified the key technical interdependencies across the portfolio and we are ensuring our plans align to the timely delivery of these. The critical, cross portfolio areas of dependency across the Paperless 2020 portfolio include:

Developing and applying a mature and standards-based interoperability architecture, allowing information to flow in a meaningful way between across the system;

The delivery of the National Data Services Development Programme including the Data Services Platform as this is a crucial element of the supporting infrastructure to enhance our future capability for the efficient processing and storage of datasets from across health and care;

Building enhancements to the National Spine, which is the key national infrastructure upon which we will develop components to enable the safe and secure transfer of information between organisations (for example through the Message Exchange Service for Health) and develop the National Record Locator Service;

Providing a solution for Citizen Identity, enabling citizens to asset their identity and benefit from the provision of digital health and care services. This will enable patients and citizens to transact online, for example in managing their own referrals, prescriptions and appointments;

Acting on the outcomes of the Review of Data Security, Consent and Opt-Outs undertaken by the National Data Guardian for Health and Care to ensure that we safeguard information about patient’s health and care and enable the public to make informed choices about how their data is used; and,

Ensuring we have an ability to uniquely identify patients to ensure that the right information about a person is always presented to clinicians and care staff.

Delivery Plans

Annex A shows the Domains and the Programmes which comprise them.

More detail on the individual programme plans has been developed and this will be combined into a single, overarching plan to be presented to the Secretary of State in September 2016.

A small number of programmes in the portfolio remain with an “Incubation” stage where the scope of our ambition has not yet fully crystallised into a clear set of deliverables or clarified this scope with their business stakeholders and sponsors. In order to ensure that during this critical initiation phase we are providing extensive support to these programmes and the delivery teams are working closely with key stakeholders to define a clearly agreed scope which balances the priorities for transforming health and care whilst ensuring the scope of our ambition remains affordable.

The programmes which are currently in this “incubation” state are:

Health Apps Assessment and Uptake (including Wearables);

Personal Health Record;

Digital Diagnostics; and,


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Out of Hospital Care.

We have reviewed our existing initiatives to ensure clear strategic alignment between any existing activities and our new programmes. All our existing initiatives have been mapped to the domains to ensure optimum use of the NHS Digital delivery resources and provide delivery clarity. This has identified some initiatives which are closing, having successfully delivered the outcomes required and also a series of existing initiatives which are no longer change programmes but a critical live service (such as the Electronic Prescription Service) which we will continue to deliver but as a live service.

Controls and Reporting

Portfolio delivery performance is governed and held to account through the Informatics Portfolio Management Board. The Board meets monthly and receives reports on delivery performance and financial performance and future forecasts. This Board is comprised of representatives from across the health and care system.

In future portfolio delivery progress reporting will be the responsibility of the Digital Delivery Board which is currently being established and will be chaired by Keith McNeil as Chief Clinical Information Officer for NHS England. NHS Digital will provide the Digital Delivery Board with reports on delivery, financial forecasts and benefit achievement.

Annex A: Paperless 2020 Domains – Programme Delivery Confidence Overview

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Copyright © 2016 Health and Social Care Information Centre

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PAPER REF: NIB 0908-003 AGENDA ITEM 8: Clinical vision paper PURPOSE: The Strategic Clinical Reference Group (SCRG) has been

working with colleagues within the National Information Board (NIB) over the last six months to ensure meaningful outcomes for clinicians from Paperless 2020.

The driving force for this work is to create a clinical pull for digital transformation to

improve care including at the point of consultation and to avoid errors of the past

when clinicians and their needs from digital transformation were not supported or

even encouraged.

The output of the work undertaken has 5 major components, which act as a cohesive

whole and must be seen in that context:

1. A commitment to engagement by the clinical bodies via SCRG with NIB constituent bodies with regard to Paperless 2020 [see appendix 1];

2. An agreed focus on clinical benefit and in particular clinician benefit for the portfolio of programmes and each individual programme;

3. A mechanism by which the clinical “ask” [see appendix 2] can be converted into an agreed deliverable in terms of clinical benefit by November 2016;

4. An operational mechanism whereby each business domain [or group of related programmes] has a clinician leader responsible for delivering their contribution to the portfolio clinical benefit statement and describing the individual programme clinical benefit and delivering it;

5. Regular dialogue with SCRG every 15 months by each business domain to give assurance that the clinical focus is on track for delivery and that any unresolved national clinical challenges are raised with the aim of resolution.

The initial definitions of clinical benefit and clinician benefit are:

“Clinical benefit is a described and/or measurable improvement in the outcome or process of care from a clinical team, resulting from a Paperless 2020 instigated change, assessed to be a good thing by at least one clinical stakeholder group.”

“Clinician benefit is the extent to which clinician functions are enhanced by the digital transformation or not. Clinician benefit should be described in a way which is reliable, understandable, measureable, behavioural and appropriate to clinicians.”

Recommendation: SCRG seeks support from NIB on process and content of its deliberations and forward plan

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APPENDIX 1 We live in an exciting age where the evolving nature of information and technology has the ability to transform the way we practice clinical care. The free flow of information has led to the breaking down of barriers to knowledge, both physical and conceptual. We are already seeing the impact of these changes on our day-to-day practice – the way we record and share information and the use of mobile technology are examples of changes that have shaped the way in which we interact with patients. The Five Year Forward View proposed a commitment to exploit the information revolution and the National Information Board (NIB) was subsequently established with the aim of putting data and technology safely to work for patients, service users, citizens and healthcare professionals. The Personalised Health and Care 2020 strategy is a framework of action that aims to support frontline staff, patients and citizens to take better advantage of the digital opportunity. The priorities highlighted within this framework have been used to develop a number of roadmaps, which lay out in detail the steps required for the transformation of digital care As clinicians we play a pivotal role in ensuring that these roadmaps lead to tangible improvements in the quality of care that patients receive. We are in the unique position of not only understanding the needs of our patients, but also appreciating the distinct complexities of different health settings and systems. It is vital that we contribute to discussions at a national level to ensure that any decisions lead to real improvements on the ground. If our primary duty is to put our patients’ interests above all else then it is essential that we actively contribute to decisions being made in this space which will inevitably have a very real impact on our patients. The Clinical Requirements 2020 document has been written with the aim of ensuring that the Personalised Health and Care 2020 strategy reflects and meets clinical priorities. The document is a list of clinical requirements which aims to set out, in plain English, a generic description of what clinicians would expect in 2020 from the work environment with regards to information and communication technologies. It is a set of standards designed to establish a level of detail that will inform decision-making and make it accountable. The SCRG believes that clinicians should play a key role in shaping the Clinical Requirements 2020 document. Through active engagement and continuing dialogue we can ensure that the core values held dear by both patients and clinicians are enshrined in these standards. Clinicians, more than any other party, appreciate the importance of patient safety in any dialogue about information or technology. They also understand the significance of recognizing and addressing the potential for health inequality at early stages of policy development. Clinicians are regularly faced with difficult decisions where they must balance the need for efficiency whilst ensuring high standards of care. They understand the importance of prudently allocating resources and can give key insights into this area. This is a valuable opportunity to engage, shape and steer the conversation so that these clinical priorities and values are met. The Personalised Health and Care 2020 strategy is an ambitious framework of action that requires buy-in from healthcare professionals at all levels. Adequate resource and time must be allocated so that clinicians can meaningfully contribute to this space. It is also vital that we, as clinicians, engage in these discussions to ensure that we represent our patients’ interests and provide the valuable insights that will be essential for the true transformation of care. [Comments on the statement should be sent them to [email protected]]

mailto:[email protected]

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APPENDIX 2

Clinical Requirements 2020: A document in evolution Introduction This is a generic description of what registered and regulated health and social care professionals [aka clinicians] would expect in 2020 from their work environment with regard to digital technologies. This document is owned and produced by the Strategic Clinical Reference Group [SCRG] of the National Information Board. Purpose The primary purpose of this document is to state in plain English the expectation from the clinical community of the digital environment in which we expect to work in by 2020 and to shape:

1. The content of the NIB portfolio ie the constraints and extensions applied to the NIB programme.

2. The content of a given programme ie the constraints and extensions applied to a particular programme.

The secondary purposes are to give SCRG and its members:

A common narrative to engage with policy makers, Chief Executives, programme directors, and vendors describing what clinicians expect.

The basis of a tool to measure the clinical impact of Personalised Health and Care 2020 on clinical practice, specifically in terms of how many of the business requirements listed below have been met across the health and social care system in England.

The outcome To have an agreed document, which describes the joint commitment to achieve the maximum clinical benefit from the investment in ‘Paperless 2020’. Next steps The NIB owners of Paperless 2020 are responding to the Clinical Requirement 2020 so that by November an agreed commitment document is published This document is designed to be short, such that it represents priority business issues for clinicians. The dialogue and content were determined on a “one in and one out” basis. The intent is to keep the document concise and focused on clinical priorities. These clinical business requirements are described in the next two pages. Please note individual programmes will have clinical benefits which are more specific to specific professions and disciplines and sectors of health and care

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The digital healthcare system

1. There must be adequate access to hardware and wireless networks so that a digital healthcare system is present for all clinical encounters when needed, including remote access if necessary. It must be practical to use at the point of care without queuing or waiting.

2. The digital system should have 1 – click access (with patient consent, or in an emergency when consent cannot be obtained) to the entire patient record, across care boundaries.

3. Digital systems required for delivering direct patient care should be intuitive to use and commensurate with the use of non-permanent staff members:

a. ideally it should take less than 1 hour to learn to safely use a new system for agency or locum staff AND

b. ideally should take less than 0.5 day to use the system optimally for all users.

4. All technology used in the NHS should be compliant with NHS clinical safety

standards.

The patient record

5. The information in the patient record should be appropriately consolidated and visualised so that relevant information is displayed at the point of clinical contact.

6. Care plans will have a common clinical meaning and structure so that the content is interoperable and shared between clinical teams and the IT systems that support them, without the need to re-enter data. Care plans should be modifiable to reflect the needs of different patients and specialties.

7. Test results (both radiological and pathological) must be available to the relevant clinicians who need them. This will support better decision making, improve the communication of test results to patients, and prevent unnecessary duplication of tests.

8. Patient wishes in regard to treatments, DNAR orders, organ donation, consent for research and specimen collection should be embedded in the electronic record in a way that these patient decisions can be most easily seen by any clinician involved in their care.

Digital interaction between patient and clinician

9. Clinicians will be able to prescribe certified medical devices, including apps, with

appropriate education. These medical devices should be able to interoperate with the user’s NHS record.

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10. Patient initiated or recorded data (including from apps or wearables) should be part of every provider record by 2020.

11. Clinicians will be able to interact virtually with patients AND other clinicians, if appropriate (telephone, email, video-conferencing) .These consultations should be recorded into the patient’s electronic record.

12. Clinical systems will analyse the patient record and automatically populate red flag alerts and decision support tools when certain relevant information is entered, to include:

a. Allergy information b. Medicine interactions c. Individual risk scores d. Relevant alerts, with avoidance of alert fatigue and workarounds

13. Clinical decision support and decision making tools should be nationally

regulated. This should include knowledge approval by NICE and professional bodies working together and device registration by MHRA. The tools should work safely with national record data standards and publicly procured IT systems.

14. Clinical systems will generate automatic prompts which will interact with the patient (if permitted) including:

a. Chronic disease monitoring b. Medicines reminders c. Tracking functions for monitoring treatment schedules d. Screening information e. Pending prevention procedures f. Appointment reminders g. Patient or carer information materials h. Feedback for service improvement

15. Digital technologies should support the clinician in performing effectively in their

working day. This should include technologies which:

a. Replace the traditional patient “list” – accurately identifying and locating the patients in a hospital that an individual clinician is responsible for

b. Improve communication within and across teams c. Facilitate efficient task management including rostering and workflow for

all staff but particularly community clinicians working across geographies d. Provide access to up to date information and evidence services

Digital prescribing

16. All prescriptions should be viewable within electronic patient records and all

prescribing must be shared with the GP.

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17. Community medication records can be used to semi-automatically populate

hospital prescription charts which can be modified if necessary and must be accepted by a clinical decision. Hospital prescription chart medications should automatically populate discharge summaries and community/GP medication records following a medicines reconciliation process, which must involve a clinical decision.

Administrative functions

18. Diagnostic, procedural and medication data will be coded using national

standards (technical and professional), using the same coding throughout the NHS, These data will be capable of being used to automatically populate patient records; reducing transcription time and eliminating errors

19. Record headings for structuring the patient record should support coded data and narrative such that clinical context is captured along with clinical richness that is not able to be coded

20. Clinical records, entered by clinicians at the point of care, should automatically feed administrative tools which populate payment systems, safety and performance datasets. Clinicians should not spend time on administrative coding.

Transfers of care

21. Authorised clinicians will be able to book ambulatory care encounters for patients

in primary [excluding GP], secondary or tertiary care using a standard e-referral system, including for follow up of patients leaving hospital.

22. There should be national registers of practices or services so that clinical communications can pass securely from one service to another and real time communication accompanies transitions of care.

23. Transfer of care communications should use standard structured information models produced by the Professional Record Standards Body (PRSB), which are based on the AoMRC standards, to enable interoperability between information systems.

Clinical governance

24. It will be possible for any clinician who has performed a surgical operation,

interventional procedure, or given an anaesthetic or sedation to support such a procedure, to be identified from electronic records and in secondary use data sets.

25. Systems will have inbuilt end user query tools which will support individual, departmental or provider level:

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a. Clinical audit, service improvement and innovation b. Service management, including real-time performance information c. Information governance testing to ensure access to records is always relevant

and justified via audit trails d. Activity logs for maintaining professional registration and regulation e. Complaint investigation f. Incident investigation including root cause analysis

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PAPER REF: NIB 0908-004 AGENDA ITEM 9: Patient, Carers and Service User Vision PURPOSE: For discussion at the Leadership Summit and for the NIB to

agree to consider the final draft vision at the December Leadership Summit

ISSUES FOR DISCUSSION/INFORMATION: At the April Leadership Summit, John Newton raised the prospect of a companion piece to the clinical vision adopted by the NIB. As reported to the July Working Group, Healthwatch England and the People and Communities Board have been commissioned to develop this vision on behalf of the NIB (commission letter attached as ANNEX A). The intention for the Patient, Carers and Service User Vision is to articulate briefly and in plain English what the NIB will deliver for people by 2020. This work will describe the benefits of the NIB’s agreed programmes rather than opening up new lists of suggestions. The vision will aim to provide a means for people to understand what is driving local implementation and whether the NIB’s programmes are delivering the intended benefits to them in terms of improved experience of health and care services. It will also aim to provide a resource for the Digital Delivery Board that will oversee delivery of the NIB programmes, as well as Domain Business Sponsors, SROs and programme managers in developing programmes and business cases. The development of the draft for the NIB’s approval will be undertaken through a steering group drawn from Healthwatch England, the People and Communities Board, voluntary, community and social enterprise sector (VCSE) organisations, NHS England and the NIB Secretariat. NEXT STEPS: The intention is to hold a steering group workshop in September, from which a draft will be brought to the October NIB Working Group for comment. The final draft vision will be brought for comment and approval to the December NIB Leadership Summit.

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ANNEX A By email: [email protected], [email protected]

25 July 2016 NIB Secretariat Room 2N12 Quarry House Quarry Hill LS2 7UE Tel: 0113 254 5839 [email protected]

To: Neil Tester, Healthwatch England Jeremy Taylor, chair People and Communities Board Dear Colleagues, As interim Chair of the National Information Board (NIB) I am writing to commission you to develop a patients, carers and service users’ vision document to articulate the benefits of the Paperless 2020 portfolio for patients, carers and service users. By way of background, the NIB commissioned a similar ‘clinical vision’ paper to articulate the benefits of Paperless 2020 for clinicians. It states in plain English what the clinical community expects of the environment in which they will be working by 2020. Developed by the Strategic Clinical Reference Group (SCRG) it was signed off at the 20 April NIB Leadership Summit. I have attached a copy for information. I would be very grateful if you and your colleagues at Healthwatch England and on the People and Communities Board could develop a similar patient, carer and service users vision paper. It should succinctly set out the benefits, from a patient, carer and service user perspective of the Paperless 2020 programmes as already agreed and which have started to be delivered. It would obviously be helpful if this document could be broadly a companion to the ‘clinical vision’ paper. I feel that both papers could be extremely helpful for Domain Business Leads, Senior Responsible Officers (SROs) and programme managers in developing their programmes and business cases. You will, I hope, be able to build on previous work undertaken in the run up to publishing ‘Personalised Health and Care 2020’ and as part of the development of the NIB roadmaps, and the recent review of data security, consent and opt-outs by Dame Fiona Caldicott.

I would suggest that the work is led by Healthwatch England, with support from the People and Communities Board but no doubt you will also want to work closely with many individual Voluntary, Community and Social Enterprise (VCSE) organisations as well as Emma Easton, Patient and Public Partnerships Lead in NHS England ([email protected]).




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Given the potential complexity it may prove helpful to establish a steering group to manage the engagement required, perhaps with representatives from the NIB, Healthwatch England, the People and Communities Board, and NHS England. The following are my suggested reporting milestones. I do hope these are acceptable.

Activity Timeframe

Agreement from and Healthwatch England and People and Communities Board to take forward this patient, carers and service users vision paper

26 July 2016

Proposal received from Healthwatch England and People and Communities Board on scope of work and how they propose to take this work forward.

19 August 2016

Draft paper considered by Steering Group August/September

NIB leadership group informed of proposal and update on progress

8 September

NIB working group receive draft paper for sign off/comment 11 October

NIB leadership group receive final paper for sign off 6 December

I am excited about the potential of this work to energise and guide the work of the NIB and its associated programmes by providing a clear indication of how the outputs will be valued by patients, carers and service users. I am extremely grateful to you and your colleagues for the enthusiastic response you have already given to the suggestion. I would be grateful if you could confirm that you are indeed content to take on the work. If you do have any questions please do not hesitate to be in touch. Kind Regards Yours sincerely

Prof John Newton Interim Chair of National Information Board

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PAPER REF: NIB 0908-005 AGENDA ITEM 10: NIB Working Group updates PURPOSE: This paper is for discussion at NIB Leadership Summit ISSUES FOR DISCUSSION This paper provides an update on the three NIB working groups held since the last Leadership Summit on 20 April 2016, which were identified as key work areas in the priorities paper. One area is highlighted for discussion at the 8 September NIB Leadership Summit:

Horizon scanning for future technologies The NIB Leadership members are asked to consider: How should NIB best continue to take account of new technologies for the health and care system? How can this intelligence feed into both Paperless 2020 implementation and longer term strategies? How does the NIB engage with industry? NEXT STEPS: Learning from local IPMB supported the direction of travel and an emphasis on better engagement. IPMB recognised there was further work to do in terms of how this could be delivered within programmes. Analytical capacity and capability for health and care James Freed and Ed Humpherson are working on a paper that will provide recommendations to the NIB addressing analytical workforce capability and capacity across health and social care. This paper will be presented at the December Leadership Summit. Horizon scanning for future technologies The NIB Leadership members should discuss and agree how the NIB should engage with and take account of the views of industry, both for the future strategy and with regards the Paperless 2020 portfolio.

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Background The NIB Priorities paper – Paper Ref 0420-002, presented at the NIB Leadership Summit on 20 April 2016, identified three key areas for the Working Groups to focus on –

local implementation/learning from local;

information management and analytical capacity in the health and social care system; and

the need for the NIB to undertake a horizon scanning exercise to identify major new topics that may require a data and information technology or related response from the health and social care system in coming years.

Learning from local The success of Paperless 2020 and its contribution to enhancing the role that data and technology provides for patients, service users, citizens and professionals depends on aligned effort across national and local organisations. As such, there should be co-production with local communities (as well as importantly with citizens and patients) by actively involving them in design and delivery. This should take place alongside renewed effort to spread local digital innovation and support adoption by others. This working group was convened to understand how NIB can best fulfil its role of ensuring that implementation of national programmes is fully informed by the experience and knowledge of those working on data and technology at local level. Purpose of the session was to:

Learn from local organisations

Discuss how to strengthen engagement and representation from local health and social care economies in the Paperless 2020 programmes

There were several expert speakers:

Local Government Chief Information Officer View – Dylan Roberts

Chief Clinical Information Officer View – Joe MacDonald (by video)

Chief Information Officer View – Ade Byrne

BCS – The Chartered Institute for IT View – Andy Kinnear

Collaboration with New Care Models – Helen Arthur and Mark Golledge Outputs of the discussions formed the basis of a paper detailing recommendations on local area co-design and collaboration with the Paperless 2020 domains, which were presented at the Informatics Portfolio Management Board on 26 July. The three headline recommendations were:

The Paperless 2020 programmes should be co-designed, developed and delivered with local health and care communities.

Ensure through both IPMB and Technical Design and Data Authority that the local perspective is central to programme delivery.

There should be a renewed emphasis to the sharing of local successes and supporting wider adoption.

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IPMB supported the direction of travel and an emphasis on better engagement. IPMB recognised there was further work to do in terms of how this could be delivered within programmes. Analytical capacity and capability for health and care There is an expectation that new programmes will generate new data sources and data feeds (for example from smartphone Apps) which may in turn require new analytical approaches. In addition much of the currently available data is not fully analysed with results presented back to potential users in a form that is accessible and easily used. Purpose of the session was:

To understand various different perspectives

What work is already going on or completed and their recommendations

What needs to be done in the future There were several expert speakers:

Health and Care Statistics in England – The UK Statistics Authority’s direction of travel – Ed Humpherson, Director General for Regulation

Health Foundation – Analytical Capability, understanding the issues – Professor Martin Bardsley, Senior Fellow at the Health Foundation

HSCIC & PHE – What does a good analytical service look like and what are the key challenges – Daniel Ray, Director of Data Science at NHS Digital, and Julian Flowers, Head of Data Science at PHE

Demand for data science expertise – Professor Beth Noveck from the Open Government Initiative

Table discussions took place to understand the work already happening this area, where the deficits are and what work NIB can support to add most value. A paper detailing the outputs and recommendations of the Working Group is being developed by James Freed, Chief Information Officer at Health Education England, in collaboration with Ed Humpherson, Director General for Regulation at the UK Statistics Authority. This paper will be presented at the December Leadership Summit. There is potential for a small group to be set up to look at this area in further detail. Horizon Scanning for future technologies The intention of the working group was to consider areas that were either not addressed in ‘Personalised Health and Care 2020’ (PHC2020) and therefore not yet picked up in the portfolio of funded programmes overseen by NIB, or where change has been so significant that the topic requires a fresh look. The purpose of the meeting was to discuss and understand future technologies that may have data and information implications for the health and care system in the future, including the potential impact on the Paperless 2020 portfolio. There were several expert speakers and examples provided of new technologies:

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Context around financial and efficiency gap of Five Year Forward View – Matthew Swindells, National Director for Operations and Information at NHS England

Office of Life Sciences/NIB horizon scanning roundtable with industry, hosted by techUK – Loy Lobo, CEO of Wegyanik (see details of this meeting below)

The Department of Health’s Strategy Unit horizon scanning work – Technology impacting on health & care from 2030 – Alex Heath, Strategy Adviser DH, and Alistair Rose, Strategy Adviser DH

Microsoft – cloud based storage for health and care records – John Doyle, Lead Technology Strategist (UK), Microsoft, and Dr Kenji Takeda, Solutions Architect, Microsoft Research

GRiST – mental health risk screening system – Dr Chris Buckingham, Senior Lecturer, Computer Science at Aston University

The NB Working Group members were asked four key questions:

How should the NIB continue to engage with industry to take account of new technologies for the H&C system?

What governance arrangements should be in place to ensure that individual programmes within the Paperless 2020 portfolio recognise and account for forthcoming technologies, taking remedial action where necessary?

How can the NIB best engage with new technologies that are potentially outside of the Paperless 2020 but could impact on future strategy?

How can the NIB start to think about technologies which might be important post 2020?

techUK Roundtable In order to understand better the views of industry in advance of the Working Group, a roundtable discussion was convened by the NIB Secretariat and the Office for Life Sciences, hosted by techUK. The purpose of this meeting was to engage with industry to understand the risks and opportunities that potential future digital health technologies pose to the programmes in the Paperless 2020 portfolio. The meeting took place on Tuesday 28 June. Attendees Attendance at the roundtable meeting on 28 June was very good, with nearly 20 members from a wide range of organisations. Attendees were suggested by techUK and the Digital Health and Care Alliance (DHACA). The membership of techUK is far reaching, representing more than 900 companies and their health and social care programme provides a forum for industry to articulate their positions. We are grateful to both techUK and DHACA for their help in organising this roundtable Key discussion The meeting was arranged to understand the potential opportunities and risks for new technology that generates data and information for the health and care system. It was also intended that it would start to identify some of the forthcoming digital technologies that may impact or supersede current programmes in the Paperless 2020 portfolio. The discussion was therefore framed around some key questions:

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Threats

• What are the future disruptive technologies? • What could change in the future that would affect the NIB strategy and the Paperless

2020 portfolio of programmes? Opportunities

• What are the areas that new technologies cover? • What are the big cost saving opportunities for the NHS? • Where are the places that technology is not being used but could be?

There was an overall message that most of the opportunities come from better exploiting existing technology, rather than looking to emerging (untested) technologies. The main themes coming out and potential alignment to the Paperless 2020 portfolio:

Clarifying ownership of the electronic patient record – general feeling that control (including legal control) should shift to the patient and that this would unlock significant change. Patients will have access to their records but, clarity is required about who will be the legal data owner. It is yet to be determined how much of their record patients will be able to access and what form it will be made available. If it is the patient, it will enable easier use of data for secondary purposes.

Key Paperless 2020 Domains: o D – Integrated care o G – Paper Free at the point of care o J – Public Trust and Security

To enable change interoperability standards are critical – work is already underway to produce these. There are suppliers looking at Personal Health Records and Electronic Health Records but there’s no standard. Technology is ready to be deployed but there are huge barriers due to the lack of standards.

Key Paperless 2020 Domain: o D – Integrated care – should deliver the aforementioned interoperability standards

through the Code4Health interoperability community.

Not enough just to have lots of data, we need to think about how patients, clinicians and managers can sensibly engage with and use the data to obtain its benefits;

Key Paperless 2020 Domain: o H – Data Outcomes for Research and Oversight – see especially the National Data

Services Development programme which is developing a data platform. This work is initially targeted at commissioners.

o The NIB Working Group in May looked at analytical capacity and capability in the health and care system. The outputs of the meeting and recommendations will form the basis of a paper to be presented at the NIB Leadership Summit on 8 September at Expo.

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Blockchain, also referred to as Distributed Ledgers, is potentially the most disruptive future technology. Ledger technology could be used to synch patient records, enable more secure storage of data, and ensure that all patient records are up to date and consistent – if one record is changed all the others will change at the same time. The primary record could be owned by the patient and they would be able to consent to any changes made. Whilst Blockchain may have a lot of potential, there needs to be a real focus on what tech already exists.

Key Paperless 2020 Domain o J – Public Trust and Security.

Ongoing problem of adoption, need to think about use of incentives and culture change.

Key Paperless 2020 Domain: o G – Paper free at the point of care: workforce and professional capabilities

programme. o There is a general focus across the portfolio on clinician engagement and this is

also covered by the Clinical Vision Paper.

Need to think about digitising system from patient perspective – e.g. online appointment system.

Key Paperless 2020 Domain: o F – Elective Care will enable online appointment booking. o C – Transforming General Practice. Patient Online already enables appointment

booking in primary care.

New tech potentially increases demand on system. This can possibly only be managed through using algorithms that automate and enable self-management. Other industries e.g. airlines and supermarkets are focused on how to make the customer do more to use and create data.

Some examples which the group felt were not being fully exploited by NHS included: o Smart phones – including the technology that supports them (e.g. movement

sensors). Likelihood that sophistication would continue to develop. (Also noted that a lot of people in NHS probably currently using their own personal tech.)

o Voice recognition software. o Data analytics & algorithms through high powered cloud and AI computing. o Clinical assisted AI. o Robotics.

NIB Leadership members are asked to discuss:

How should NIB best continue to take account of new technologies for the health and care system? How can this intelligence feed into both Paperless 2020 implementation and longer term strategies? How does the NIB engage with industry?

, Central 5, 6 & 7, Manchester Central Agenda · 2016. 9. 8. · NHS England Dr Julia...

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