OFFICIAL SENSITIVE
Ref:
National Data Opt-out Programme/Programme Board/Paper 02
Title:
National Data Opt-out Programme – Setting Approach
Author:
Tim Magor, Programme Head
Programme Board Sponsor:
Tim Magor, Programme Head
Purpose:
The purpose of this paper is to bring the Programme Board up-to-date on discussions regarding the inclusion
or not of setting capability within GP systems for the national data opt-out.
Background:
The National Data Opt-out Programme Board has been considering since 5 October 2017 whether
functionality for setting national data opt-outs should be included in GP clinical systems. On the 14 December
2017 a decision was taken not to include this functionality subject to further testing with the GP profession.
Key Points:
The Royal College of General Practitioners (RCGP) have subsequently been engaged regarding this decision.
They are clear they do not want additional burden on GP Practices from administering the national data opt-
out. However, they have sought assurances that accessibility needs can adequately be met through other
channels available, and that they can perform their role as data controllers for upholding national data opt-
outs.
Actions Required by the Programme Board:
The Programme Board is asked to receive the report, and to:
• Note the action plan to respond to points raised by RCGP;
• Note the risks and mitigation plans in place; and
• Approve that GP System suppliers are re-engaged immediately on the basis of providing Upholding
functionality only.
Circulation:
Programme Board attendees only.
Dates considered by Programme Board:
28 February 2018 (Potential Disclosure)
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Introduction
1. The National Data Opt-out Programme (NDOP) has been developing a multi-channel
approach for allowing patients to set national data opt-outs through a national offer of a
digital platform, a digitally assisted service and a non-digital service. In considering a
number of emergent factors, such as the potential burden on GP Practices, the
Programme Board have been reviewing since 5 October 2017 whether an additional
channel for setting in GP Practices should be provided or not.
2. Following membership review of the ‘National Data Opt-out Programme: GP Systems for
Setting - Discussion Paper’ the Programme Board agreed on 14 December 2017 to focus
the setting solution on the digital platform, digitally assisted and non-digital service only.
However, it highlighted that testing should take place with the Royal College of General
Practitioners (RCGP) to get their views on this decision.
3. This paper brings these discussions up-to-date.
Background
4. The Programme Business Case (PBC) for the NDOP programme was approved by the
Technology and Data Investment Board (TDIB) on 17 February 2017. It considered a
range of options for meeting the critical success factors and spending objectives. The
preferred option for providing a non-digital channel of setting national data opt-outs was
through GP practices AND the national back office. This direction was further evaluated
and endorsed in the Outline Business Case (OBC) approved by TDIB on 29 September
2017.
5. The NDOP has progressed the delivery of a setting channel in GP Practices through the
GP Systems of Choice (GPSoC) Requirements and Validation Engagement (RAVE)
process. This covered requirements for the following:
• The Setting and Viewing of National Data Opt-outs via GP Systems
• The Upholding of National Data Opt-outs via GP Systems
• The Setting and Viewing of National Data Opt-outs via Patient Facing Service
Applications
6. A series of Foundation Workshops and consultations were held between May and August
2017 involving GP system suppliers, the GP Profession, and other key stakeholders. The
feedback received shaped the final requirements that were issued to GP System Suppliers
on 8 September 2017.
7. The availability of solutions to meet these requirements to the (then) public launch
timescale of March 2018 was highlighted as a risk at the Programme Board held on 5
October 2017. Further work was requested to understand the impact of not having a GP
offering available to different patient groups. A paper was considered by the Programme
Board on 9 November 2017, where it was recommended that further work was undertaken
to understand whether it is possible to offer a full service to the public for setting national
data opt-outs through national digital, digitally assisted (including patients being guided
through the process on the phone) and non-digital (patients complete a form and submit
proof of ID) channels without the need for GP system changes.
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8. This evaluation was set out in ‘National Data Opt-out Programme: GP Systems for Setting
- Discussion Paper’ considered by the membership. This highlighted the case for change:
Reducing the burden on GP Practices under pressure – Although the digital
service for the national data opt-out is likely to reduce burden by replacing some of
the paper based opt-out processes that exist today (e.g. Type 2s), consideration is
needed of the new burden from making available functionality to opt-out in GP
Practices.
Empowering patients – The Secretary of State for Health signalled at Expo in
September 2017 the shift in power from doctor to patient as patients use
technology to put themselves in the driving seat of their own healthcare. Through
the eight digital commitments, including preferences, the emphasis is on patients
to be enabled to undertake transactional tasks such as opting-out themselves.
Simplifying the communication to the public – A universal offer to patients
within England to be able to set their preferences through GP Practices will be
challenging to communicate to the public when this functionality is introduced at
different times by different GP system suppliers.
Reducing the degree of change – In shifting from GP Practices away from
processing national data opt-outs to sign-posting patients to other channels, the
degree of change is reduced in terms of staff training, process change and
implementation support. It has been highlighted by GPs that much of this change
has been signalled as taking place over the winter pressures period.
Delivering value for money – The opportunity to reduce the level of changes
required to GP systems, as well as the associated change, whilst increasing
benefit through reduced burden potentially improves the value for money for the
national data opt-out.
9. At the Programme Board held on 14 December 2017, the group agreed to pursue setting
through a national solution only, subject to some final testing with the GP profession.
Testing with the GP Profession and Next Steps
10. The programme formally approached the RCGP on 9 January 2018 to understand their
views. Their response highlighted the following:
• There was support for not making available the ‘GP Assist’ channel in order to
avoid burden on GPs in administering the collection of the national data opt-out;
• They proposed that there should be on-going impact assessment work once the
national data opt-out is up-and-running to ensure that particular groups are not
excluded as a result of not having this channel;
• It was felt by the profession that GPs may still have a significant role to play in
making patients aware of, and to understand the choice and its effects, and this
needed to be taken in to account;
• Clarification was required on the ability for GPs to check that national data opt-outs
had been applied to meet their duties as data controllers.
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11. A follow-up meeting was held on the 25 January 2018 between the RCGP and the
programme to discuss and clarify these points. It was noted that:
• The programme are actively engaged with accessibility groups on a range of issues
including the routes to set a preference. This would be used to identify any
accessibility concerns for particular groups.
• The upholding part of the GP system changes remains in-scope, and the
requirements for GP system suppliers will need to support GPs to be assured that
national data opt-outs are being applied appropriately;
• There is a wider piece of work needed on ensuring GP Practices as data controllers
have guidance on putting robust contracts in place with data processors, including
clear instructions on processing national data opt-outs and where liabilities would
fall.
12. The following action plan is being taken forward on the back of these discussions. It should
be noted that GP Practices will not be expected to uphold national data opt-outs from 25
May 2018, but at a later date to be agreed.
Issue
Action
Owner
Accessibility – ensuring On-going engagement with
Rachel Merrett
accessibility of national accessibility groups through Public
data opt-out.
Engagement Strategy.
On-going user research of digital and Susie Day
non-digital services.
Upholding
–
providing Ensure incorporated within scope of Scott Grayston
assurance to GPs that opt-
requirements for GP systems
outs being applied.
suppliers.
Upholding – governance on Work with NHS England team and Rachel Merrett
data-processing for GPs of BMA/RCGP to ensure clear guidance
national data opt-outs.
on arrangements GP Practices should
put in place with data processors.
Risks and Issues
13. The risks and issues plus mitigations are set out below:
Risk/Issue
Mitigation
Risk that the burden on informing patients on All programme communications will direct
data use and the national data opt-out falls patients to a national web-site or national
to GP Practices.
telephone number. This is a citizen focused
initiative and is about the whole health and
care system playing an effective role in
communicating the national data opt-out
rather than just GP Practices alone.
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Risk/Issue
Mitigation
Risk that some GP Practices will want to The national data opt-out can be set digitally
offer patients the ability to opt-out in the from any location where the internet can be
surgery.
accessed. If individual GP Practices want to
offer services to help particular patients to
use the core digital offering then this is
possible without using the GP system.
Risk that some patients will need to visit their The programme will work closely with the
GP Practice to obtain their NHS Number or RCGP and other programmes to promote
update their contact details.
the benefits for patients of having up-to-date
contact details e.g. clinical correspondence
and appointment reminders.
The NHS Number can be obtained through
Patient On-Line services, and the wider
benefits (e.g. appointments and repeat
prescriptions) of registering for such an
account can be promoted as part of this
engagement.
Risk that some GPs may want the ability to There are a range of preferences, opt-outs
discuss data sharing preferences with and consents in health and care, not all of
patients.
which are held on GP systems. A policy
paper considering the issues regarding
clinicians being able to access the national
data opt-out set by citizens is currently being
developed for ‘check and challenge’.
Risk of increased pressure on the contact The programme will work closely with the
centre which may lead to poor response contact centre to plan for effective capacity
times, and negative media reporting of this.
to meet expected demands.
Actions required of the Programme Board
14. The Programme Board is asked to receive the report, and to:
• Note the action plan to respond to points raised by RCGP;
• Note the risks and mitigation plans in place; and
• Approve that GP System suppliers are re-engaged immediately on basis of providing
Upholding functionality only.
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