Dear all, Notes from the care.data Advisory Group meeting on 17th

Dear all,
Notes from the care.data Advisory Group meeting on 17th October
Thank you yet again for giving your time. My summary is provided below. Please let me know if you
want to add/change something or indeed if there is anything you would like clarity on or would
specifically like to see on the agenda for future meetings.
Programme update (key messages) (Eve Roodhouse / Tim Kelsey):
Tim Kelsey (TK) stated we must be clear on key decision points for the pathfinder stage. The first
key milestone will be to commence fair processing and only then subsequent extraction. The
intention is to extract data at the end of the fair processing period and the communication to the
public will make this clear. There will be further checkpoints prior to extraction and a full evaluation
of the pathfinder stage will be undertaken once extraction has been completed and data analysed
for insight
Eve Roodhouse added that the programme team is currently working with pathfinder CCGs to
establish local plans for co-production of the communication materials and approaches that which
will be used as well as engage across the CCG areas. Eve advised that there will be a 6 week fair
processing period before starting the data extraction and that once the data has been extracted it
will only be available within the Secure Data Facility (SDF), on site at the HSCIC. There will be an
agreed set of analysts who will work on the extracted data from a limited number of organisations
during the pathfinder stage, namely NHS England, Public Health England, CQC and HSCIC. HSCIC
analysts will focus on data quality.
Creative Agency Presentation (Paper B)
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Phil Bastable, Head of Marketing for NHS England presented the creative agency approach
to communications on which we are currently working. This work is based on the research
and survey conducted by Ipsos MORI, which identified that the main challenges were to
help the public understand about how data sharing would deliver benefits for the
population and to reassure patients on the privacy of their data.
In that respect, three different creative paths or ‘routes’ were tested with 4 focus groups,
representing a broad mix of the general population. Communications tests showed that
Route 1, which is a text-based design, was considered to be too simple, not eye catching and
raised suspicion about what people were thanked for. Route 2, which identifies issues in
terms of services with GP practices, was thought to be too childish. Results clearly showed
that the public had an absolute preference for route number 3, which is focusing on images
of NHS staff/nurses delivering services for patients. The use of icons suggests how individual
data will be used.
Phil Bastable stated that once produced, the material would be available through the NHS
England and the NHS Choices websites and will be widely distributed within GP practices.
Eve Roodhouse advised that during the pathfinder stage the programme will test different
communications channels, specifically letters and e-mails, adding that many GP practices do
not have email addresses for their patients. She highlighted that all GP practices, including
surrounding pathfinder areas and those who don’t actively want to participate will need to
be kept informed of the status of the programme plans are being developed.
Comments from the group:
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Members mentioned that the communication materials and approach taken by the creative
agency was well thought through and worked on various levels.
A question was raised as to the way language issues would be considered. It was confirmed
that communications (introduction booklet) would be translated in different languages;
videos for deaf communities will also be available to make sure that the information will be
well spread within different communities and will take into account a wide range of
population.
Engagement Summary Presentation (Formally ‘You Said, We Did’) (Paper C)
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Eve stated that the Advisory Group were seeing the version shared with the Programme
Board on 15 October 2014, the Board had requested some changes and these will be
incorporated along with any comments from the Advisory Group. The intention is to release
the presentation for use by key stakeholders including CCGs who were involved in the
listening period. Members of the Advisory Group were asked to send any feedback or
suggestions they had direct to Eve Roodhouse.
Comments from the group:
• Comments were raised on “You Said: Opt-Outs”.
• It was noted that there was no NHS England or HSCIC logo. Tim Kelsey clarified that
care.data was a programme of work for the NHS, hence branded as ‘NHS’.
• The need to have a broadcast conversation plus narrowcast conversation to speak about
pathfinders was discussed. An overarching strategy needs to be set up for this.
Information Analysis Linked Primary Care – Secondary Care Dataset (Paper D)
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Eve mentioned that this paper was discussed during the September Programme Board and
is shared within the Advisory Group for some feedback, comments or contribution to this.
Furthermore an Expert Reference Group is scheduled for 23 October 2014 and Advisory
Group members were invited to attend.
Comments from the group:
• The need to understand some practical difficulties was raised from BMA perspective, who
stated the need to make sure that in the long term, data linkage benefits will be
understood. In response, Eve noted that a clear agreement regarding the roles of each
respective organisation/stakeholder and define the outputs of data linkage will have to be
set up.
Secure Access to data (Paper E)
• Richard Irvine provided an update in the HSCIC’s development of the Secure Data Facility,
initially to support the care.data pathfinder stage
• The Secure Data Facility (SDF) will be a physical room located in Leeds. There will be security
controls in place to permit only specific analysts access during care.data Pathfinder stage.
These analysts will be from NHS England, Public Health England, CQC and HSCIC
• A roadmap is in development which will assist the Advisory Group in understanding the
future development of data access solutions, for example to support research activity.
• It was confirmed that models, such as ADRN and the Farr Institute’s nodes, are being
considered in order to assess how elements will be useful to allow future access to data
from alternative secure locations.
• Following the comments and the work of the Advisory sub group on the 1 September 2014,
the document provides information regarding the commitments taken by the HSCIC to
develop the SDF.
• An Expert Reference Group is being established for input from experts in the field.
• Any comments from the Advisory Group were welcomed direct to Richard following the
meeting.
Regulations and Directions (Paper F)
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Mark Davies presented the paper on regulations and directions.
Eve Roodhouse reiterated the Programme’s commitment that the rules around access to
identifiable data or data which is potentially identifiable must be clearly articulated before
data extraction from pathfinder practices commences and implemented before any data
collected as part of the programme is made available to organisations outside of the HSCIC.
This includes changes to primary legislation having received Royal Assent (now complete)
and associated Regulations having commenced before data is disseminated. The regulations
were the subject of the discussion.
A question was raised as to the timing/nature of the Directions on objections (or opt-out), in
particular in relation to onward dissemination of data by the HSCIC. Eve noted that the
HSCIC will not disseminate data during the pathfinder stage (other than aggregate data).
Instead, analysts will have to travel to the Secure Data Facility at HSCIC offices in Leeds.
It was highlighted that language such as ‘anonymised’, ‘pseudonymised’ was not being used
consistently across the system and the group reiterated the need to ensure language is
consistent as we move forward and sought the support of the Department of Health to
achieve that.
Regulations about the use of data for commissioning were discussed.
Comments from the group:
• TK stated that the organisation of a briefing would be very helpful for people to understand
where we are now, and reassure the ones who do not feel briefed enough.
• The group discussed the relationship between Care.data and Patient Online. A comment
was raised asking whether we had included anything about patients being able to view their
consent status in the specification that has gone out to suppliers. It was agreed that it would
be useful to invite the patient online team to the next meeting.
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It was discussed that we might be able to consider the project to go more widely and raise
public awareness on a larger than national scale by 2015-2016. It was agreed that National
Information Board framework will set the context for this.
Actions (from this meeting and in train/carried from previous)
1) Advisory Group members to provide feedback/suggestions for the Engagement
Summary Presentation (Formally ‘You Said, We Did’) (Allocated to AG members)
2) Richard Irvine to develop a roadmap to support HSCIC response to partridge review
(Allocated to Richard Irvine)
3) Invite the patient online team to the next Advisory Group meeting
Next meeting
19 November 2014, 10:00 – 12:00 Wellcome Trust, Gibbs Building.
Best wishes.
Attendees
Prof John Appleby
Kings Fund
Dr Joanne Bailey
British Medical Association
Phil Bastable
NHS England
Phil Booth
medConfidential
Emma Carr
Big Brother Watch
Cynthia Clark
Patients 4 Data
David Corbett
Care.data Programme Head
Mark Davies
Department of Health (Observer)
Ciaran Devane (Chair)
MacMillan Cancer Support
Simon Enright
NHS England (Observer)
Paul Farmer
MIND
Richard Irvine
HSCIC
Tim Kelsey
NHS England
David Knight
Department of Health (Observer)
Dr Geraint Lewis
NHS England (Observer)
Dr Arvind Madan
Hurley Group
Prof Nigel Mathers
Royal College of General Practitioners
Dawn Monaghan
Information Commissioner’s Office (ICO)
Ronan O’Connor
NHS England
Nicola Perrin
Wellcome trust
Eileen Phillips
HSCIC (Observer)
Fay Quayle
NHS England
Eve Roodhouse
Care.data Programme Director
Niccolo Stamboglis
Healthwatch
Prof John Williams
Swansea University
Donna Braisby
Secretariat
Fanny Hebert
Secretariat
Apologies
Prof Dame Sue Bailey
Royal College of Psychiatrists
Jennifer Baker
NHS South Devon and Torbay CCG
Dame Fiona Caldicott
Chair of the Independent Information Governance
Oversight Panel (IIGOP) (Observer)
Sir Cyril Chantler
NHS England independent chair of the quality and
clinical risk committee
David Fish
UCL
Dr Ben Goldacre
Journalist and writer
Dr Mike Knapton
British Heart Foundation
Dan Nesbitt
Big Brother Watch
Ruth Owen
Whizz - Kidz
Mark Procter
NHS South Devon and Torbay CCG
Dr Katherine Rake
Healthwatch
Jeremy Taylor
National Voices
Dr Mark Thomas
Royal College of General Practitioners
Lord Leslie Turnberg
Association of Medical Research Charities
Prof Sir Simon Wessely
Kings College