Forman Review: executive summary and Public Health England responses to the recommendations
Published 30 September 2021
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Executive summary (November 2020)
The aim of this review was to undertake a rapid and focused independent review of the National Disease Registration Service (NDRS) in Public Health England (PHE) with respect to questions raised by the proposal to relocate the function to NHS Digital.
The reviewer was asked to address the following questions:
- What are the benefits to the health of the public and to the health and care system as a whole of closer integration of PHE’s NDRS functions with those in NHS Digital?
- What are the options for achieving closer integration and what are the high-level strengths and weaknesses of those options?
- If the proposed solution is to transfer NDRS staff and functions to NHS Digital which groups should transfer and which should remain in PHE? What would the implications be for other functions in PHE of such a transfer?
- How should such integration be achieved and what is a reasonable timescale?
- Are there any information governance or privacy issues to be addressed?
- What are the risks involved in such a transfer and how can they be mitigated?
The review was undertaken by Professor David Forman and conducted by extracting information from relevant documents and by interviews conducted with relevant PHE staff and external stakeholders. All staff working within NDRS were invited to submit written comments.
Professor David Forman is Visiting Professor of Epidemiology, University of Leeds, UK; Chair, Independent Advisory Panel on Data Release, PHE; Former Head, Section of Cancer Epidemiology, International Agency for Research on Cancer, Lyon, France.
National Disease Registration Service
NDRS currently comprises 2 integrated services: The National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS). There are just over 300 whole-time equivalent core staff within NDRS and around a further 80 staff funded externally through partnership agreements. The annual core budget is £13.95 million and a further £2.4 million is derived from external contracts.
Organisationally, NDRS has 8 teams responsible for registration, analysis, data projects, engagement and awareness, molecular markers and genomics, IT, data release and business and administration.
McNeil 2017 review
An earlier review, undertaken by Professor Keith McNeil and published in 2017, recommended that the NDRS function should not be moved to NHS Digital at that time but that a move might be considered in the future (between 2020 and 2022). He proposed that a further review should be conducted prior to such a move, considering changes in the broader landscape around NHS data and considering interoperability and the genomics and life sciences agendas.
McNeil provided several recommendations concerning the logistics for transfer of data assets including the formulation of a due diligence checklist for the process.
The NHS Digital proposal, which was initiated by a request from the PHE CEO, is that NDRS should be moved in its entirety (including all staff and existing data assets) from PHE to NHS Digital and that this should be completed by end of the financial year 2020 to 2021.
The NHS Digital view is that they now have a mature infrastructure and technology platform appropriate to take forward integrated data curation programmes such as undertaken by NDRS and as proposed within the government’s Life Sciences Strategy. Linkage of these to the many other assets maintained by NHS Digital will be simplified within a single organisational environment and will reduce the information governance barriers, costs and opportunity costs. Harmonising the organisational structures and controls will allow improved efficiencies in data access and release to support research and other secondary uses.
In general, those consulted endorsed the NHS Digital view and, especially in the current climate of uncertainty around PHE, thought that NHS Digital provided the optimal organisational location for NDRS.
Reservations were expressed regarding whether NHS Digital provided the appropriate environment for dealing with the complexity of disease registration processes for cancer, congenital anomalies and rare diseases. NHS Digital’s strategic intention to establishing individual longitudinal event-based health records and using these to develop a range of disease registries provided some reassurance on this point.
The importance of appropriate clinical, academic and public health engagement with and oversight of the NDRS functions within NHS Digital was frequently emphasised especially by external stakeholders. Relevant structures would be needed to provide high-level support and guide the analytical programmes of NDRS.
Data Access Request Service mediation
A specific and major concern, repeatedly stressed by stakeholders, was that the NHS Digital process for providing external organisations with access to data mediated through the Data Access Request Service (DARS) was not fit for purpose. This was viewed as requiring significant reform to improve ease and timeliness of delivery and reduce user costs. NHS Digital’s acceptance of this criticism, commitments to a complete overhaul of DARS and development of smarter forms of data access, such as through single access gateways, Trusted Research Environments (TREs)and harmonised data access request forms were welcome in this regard.
Providing a ‘decision in principle’ on the move as rapidly as possible was regarded as important by NDRS staff to provide clarity about their future and minimise uncertainty. External stakeholders in partnership arrangements with NDRS or dependent on NDRS for data extracts also need to be kept fully informed about new arrangements.
In response to the specific review questions, the reviewer concluded that:
- bringing the NDRS datasets into NHS Digital, in alignment with other NHS data resources, would be of significant public, patient and healthcare benefit
- closer integration of NDRS with NHS Digital can best be achieved by the organisational move of NDRS, as outlined in the proposal from NHS Digital
- in principle, all core NDRS staff would transfer to NHS Digital under appropriate arrangements although further discussions may be required regarding some teams (for example those responsible for data release and business management and administration functions)
- to effect the move, an agreement in principle should be made as rapidly as possible (end November 2020) with the establishment of a Joint PHE/NHS Digital Disease Registration Transfer Group (JDRTG), under the oversight of the Department of Health and Social Care (DHSC) – transfer completion should be consistent with the timeline for establishment of the PHE successor organisations and preferably coordinated with the start of the new financial year
- in general, maintaining NDRS within an NHS organisation that already has responsibility for most of the data sources required by the disease registration processes was thought to reduce information governance concerns
- risks were considered under 4 headings and appropriate mitigations for each are considered in the body of the report:
- Risks related to maintaining the high quality of the NDRS datasets.
- Risks related to maintaining the analytical function.
- Risks associated with adoption of DARS/IGARD for accessing NDRS data.
- Risks during the transition process of interruptions to data flows, reporting activity and data releases.
PHE responses to the Forman Review recommendations (April 2021)
Recommendation 1:
There should be a substantive transfer of NDRS to NHS Digital.
PHE response:
As part of the Public Health Reform Programme and the transition of PHE functions to successor organisations, a ministerial decision in principle has been made that there should be a substantive transfer of NDRS functions to NHS Digital, subject to appropriate due diligence.
Recommendation 2:
A decision in principle to agree this transfer should be agreed and announced as soon as possible (preferably by 30th November 2020).
PHE response:
A ministerial decision in principle has been made that there should be a substantive transfer of NDRS to NHS Digital, subject to appropriate due diligence. This decision has been communicated to PHE staff on 31 March 2021, in alignment with the broader Public Health Reform Programme timescales.
Recommendation 3:
A Joint PHE/NHS Digital Disease Registration Transfer Group (JDRTG), under the oversight of DHSC, should be established to oversee the transfer and develop a transition plan and timeline.
PHE response:
The Public Health Reform Programme will establish the necessary governance with all potential organisations receiving PHE functions to manage the transfer of all PHE’s current functions.
Recommendation 4:
The timing of the transfer should be integrated with that of the overarching reorganisation of the Health Improvement Directorate of PHE and will have a dependency on completion of necessary HR processes. The ambition should be to complete the transfer by April 2021 for concordance with the new financial year.
PHE response:
The timetable for the transfer of PHE’s functions will align with the broader Public Health Reform Programme timescale. Currently the objective is to transfer functions and people to their new locations by October 2021.
Recommendation 5:
All functions of NDRS should, in principle, be incorporated in the transfer although further consideration should be given by JDRTG to the situation around the teams such as those responsible for the data release and business management and administration functions.
PHE response:
Once the destination of different functions is agreed, the Public Health Reform Programme will consider the implications for individual posts and teams and develop plans for consultation with staff. Current timetable for staff consultation is mid-June 2021.
Recommendation 6:
Staff within the data release and business management and administration functions should be consulted regarding their preferences for transfer to equivalent functions within either NHS Digital or the successor organisations to PHE. Secondment arrangements of these staff post-transition could also be considered.
PHE response:
See response 5 above.
Recommendation 7:
The JDRTG should advise on the establishment of SLAs between NHS Digital and the successor organisations to PHE regarding existing service support arrangements (for example, from NDRS IT to ADTJ systems) and existing routine data exchanges (for example, between NDRS and PHE Screening Service).
PHE response:
The planning assumption is that functions that support/service assets ‘owned’ by functions outside of NDRS follow those assets. The Public Health Reform Programme will consider alternative options where they are seen to serve the best interests of the Public Health system as a whole.
Recommendation 8:
The transfer process for NDRS data assets should ensure full adherence to recommended security standards and that continuity of service is, as far as possible, maintained. Protocols developed for asset transfers under tranches 1 and 2 of the McNeil review should be reviewed and implemented where appropriate.
PHE response:
It is essential that security standards and continuity of service are maintained as assets are transferred. Any risk arising to either or both should be managed by NHSD and by the Public Health Reform Programme. The Public Health Reform Programme will draw on protocols developed in response to the McNeil review as appropriate.
Recommendation 9:
A review of all planned outputs from NCRAS and NCARDRS during the transition should be undertaken and an action plan formulated to minimise delays in publication. All relevant stakeholders should be kept fully informed.
PHE response:
An audit of planned outputs and releases from NDRS functions and assets will be undertaken and a plan put in place to minimise risk to publication and business continuity overall. The approach for maintaining business continuity will be communicated to relevant stakeholders.
Recommendation 10:
A full review of ongoing data releases (and applications being progressed) from ODR to external users should be undertaken and an action plan formulated to minimise delays during the transition. All applicants and recipients of data should be kept fully informed of any interruptions to service.
PHE response:
See response 9 above.
Recommendation 11:
As part of the action plan for ongoing data releases, a protocol of agreement should be established between the PHE Office for Data Release (ODR) and DARS to ensure existing ODR approvals are confirmed by DARS and external data recipients do not have to seek additional approvals from DARS.
The respective oversight bodies, the Independent Advisory Panel for Data Release (IAPDR) in PHE and the Independent Group Advising on the Release of Data (IGARD) in NHS Digital should be involved in this process.
PHE response:
The appropriate mechanisms and plan, including for the transfer of approvals, will be put in place to minimise any possible disruption to data release arising from transfer from PHE to NHSD.
12:
Organisations with ongoing partnership/hosting agreements with NDRS should be given early notice of transition arrangements, and subject to agreement of partners and NHS Digital, all hosted staff concerned should be provided with honorary NHS Digital contracts on the same timescale as PHE staff transfer.
PHE response:
The impact of the transition on hosting arrangements will be considered as part of broader due diligence to be carried out between PHE and NHSD. The process to address this will be communicated in line with the timescales of the Public Health Reform Programme.
Recommendation 13:
Public Health Wales should be given early formal notice of transition arrangements and an SLA with NHS Digital should be established to maintain the existing hosting and support arrangements for the Wales Cancer Registration system (CATRIN).
PHE response:
All arrangements and contracts will be considered as part of the Public Health Reform Programme and options will be considered to ensure that there is no loss to business continuity.
Recommendation 14:
NHS Digital and the successor organisation(s) to PHE should establish a cross-organisational equivalent to the existing PHE Cancer Stakeholder Coordination Group to provide external advice and oversight of the cancer related activities and work programmes in both organisations.
PHE response:
The Public Health Reform Programme will work with NHS Digital and other stakeholders to determine how best to enable effective cross-organisational collaboration – this will include consideration of the role of the PHE Cancer Stakeholder Coordination Group, and possible future equivalents.
Recommendation 15:
PHE should advise NHS Digital on the requirements to support the career development needs of the disease registration staff including completion of the Royal Society of Public Health Diploma in Cancer Registration. Establishment of a Diploma in Rare Disease Registration should be encouraged.
PHE response:
Career development of registration staff is important, and these and other similar measures should be encouraged.
Recommendation 16:
The JDRTG should ensure structures are in place to safeguard the bespoke nature and complexity of the NCRAS and NCARDRS data sets and the specialist expertise and skills required to collect, analyse and interpret them. Close organisational alignment of registration, development and analytical teams within NHS Digital is highly recommended.
PHE response:
The Public Health Reform Programme recognises the benefits for the system and citizens of maintaining close alignment of registration, development and analytical functions. Where there are functions that service the wider PHE assets or priorities, those functions should transfer with those assets where possible.
Recommendation 17:
IGARD and IAPDR should be involved in the planning and considerations for the future of DARS, ODR and the ODR team with a view to supporting the input of ODR experience and practice into DARS processes.
PHE response:
The Public Health Reform Programme will draw in IGARD and IAPDR expertise as required to support the safe transfer of NDRS functions.
Recommendation 18:
Appropriate clinical, public health and epidemiological engagement with NCRAS and NCARDRS is critical alongside secondments of senior professionals to provide leadership roles within NHS Digital.
PHE response:
The Public Health Reform Programme will work with NHS Digital to determine how to facilitate appropriate clinical, public health and epidemiological engagement with NCRAS and NCARDRS following transition.
Recommendation 19:
A communications plan should be included in the transition plans to ensure public, patient and professional groups are fully informed of the new arrangements, their timing and the benefits to be accrued.
PHE response:
There will be communication to stakeholders about the approach being put in place to ensure business continuity and any new arrangements arising following the transfer of the NDRS functions to NHS Digital.