INFORMATION GOVERNANCE SUMMIT
Report of key messages
October 2016
Contents
Executive Summary.................................................................................................................... 1
Introduction ............................................................................................................................... 2
Key issues identified................................................................................................................... 2
Common themes........................................................................................................................ 5
What delegates thought of the event ....................................................................................... 5
Next steps .................................................................................................................................. 5
Annex ......................................................................................................................................... 6
1. Conceptual Framework ...................................................................................................... 6
2. List of speakers ................................................................................................................... 7
Executive Summary
The Innovative Healthcare Delivery Programme (IHDP) is a collaborative programme between
NHS Scotland and academic partners with the aim of harnessing the power of informatics to
deliver value to patients, healthcare professionals and the wider NHS through collaboration
with academia, industry and the third sector.
Having encountered a number of Information Governance (IG) challenges since its inception
in 2015, in October 2016 the IHDP hosted the first in what is expected to be a series of iterative
events to explore key issues in IG. This first IG Summit aimed to:
“In the context of Caldicott 3, begin a process of consensus building around the future
direction for Information Governance of health and social care data utilisation and
sharing in Scotland.”
This report summarises the key issues identified by participants in response to questions
posed, and brings together common themes arising in discussions.
Summary of key messages
1. Articulate the benefits of data sharing
2. Take steps to increase public understanding of the purpose of data collection and
sharing/ utilisation.
3. Invest in building a culture of trustworthiness with the public, recognising that
different ‘publics’ will need to be communicated with in appropriately different ways
4. Develop case studies to demonstrate the benefits of data sharing across different
areas
5. Declutter the organisational landscape and develop a visual ‘roadmap’
6. Align processes to lighten the bureaucratic burden
7. Focus on standards and inter-operability
8. Rethink the distinction between primary and secondary data, and position secondary
data use as part of core service delivery
9. Create a visual map of the ‘who’ and ‘why’ in the IG landscape
10. Ensure risks do not outweigh the benefits of data sharing in developing regulations
and guidance
11. Record and communicate the process of decision-making in IG
12. Develop guidelines and share good practice in relation to public engagement for
research studies
13. Develop a culture of shared values and principles across health and social care
14. Develop training to accelerate applications to take research into practice
The views of the Caldicott Guardians Group are to be sought on the outputs from the Summit,
as a first step to developing the programme for the next IG event. This will build on the key
themes identified above, and involve a wider range of participants, particularly from social
care.
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Introduction
The Innovative Healthcare Delivery Programme (IHDP) is a collaborative programme between
NHS Scotland and academic partners with the aim of harnessing the power of informatics to
deliver value to patients, healthcare professionals and the wider NHS through collaboration
with academia, industry and the third sector. The Programme has an initial focus on improving
the utilisation of cancer data in Scotland, with a view to ultimately developing a Scottish
Cancer Intelligence Framework. Since its establishment in 2015, the IHDP team has
encountered a number of information governance challenges which are by no means unique
to cancer data.
On October 11th 2016, at the behest of Paul Gray, Director General for Health and Social Care,
and chair of the IHDP Joint Strategic Board, the IHDP hosted a day-long event at the Farr
Institute in Edinburgh to explore key issues in Information Governance (IG). This IG Summit
was the first in what is expected to be a series of iterative events and aims to:
“In the context of Caldicott 3, begin a process of consensus building around the future
direction for Information Governance of health and social care data utilisation and
sharing in Scotland.”
The event was attended by 78 delegates working in clinical, research and data contexts,
including medical directors, clinicians, Directors of Public Health, information governance
leads and data management leads.
Chaired by Professor Sir Lewis Ritchie, a range of speakers gave presentations on the current
landscape of Information Governance. An afternoon of delegate discussions was framed by a
‘conceptual framework’ developed by the IHDP to stimulate thinking. Participant groups each
explored a question posed by the IHDP and identified two key issues to take forward in the
next few months.
This report summarises the key issues identified by participants in response to questions
posed, and brings together common themes arising in discussions.
Key issues identified
1. Is the IG organisational landscape fit for purpose? If not, what steps should be taken
to improve it? In particular, what leadership responsibilities need to be put in place?
Participants believed that there needed to be much better articulation of the benefits of data
sharing and suggested that the digital strategy for health and social care needs a strong focus
on standards and inter-operability.
The organisational landscape was felt to be in need of de-cluttering. It was suggested that the
current number of c.1000 Data Controllers was too many, and that an IG road map or
“organogram” should be developed, to help practitioners navigate the system. Many IG issues
should be addressed “once for Scotland”, which would mean less autonomy for individual
Boards, but achieve a more consistent, standardised approach.
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2. What steps should be taken to ensure a proportionate approach to the sharing and
use of health and social care data in clinical practice settings?
Participants suggested that in this day of multi professional teams accessing the GP record, it
was perhaps time to rethink the role of the GP as Data Controller. Issues around interoperability and IT need to be addressed, as these are seen to increase risk in data sharing and
therefore create barriers.
Ensuring SPIRE is a success is key.
3. What steps should be taken to ensure a proportionate approach to the sharing and
use of health and social care data in research settings?
Participants discussing this question noted that bringing stakeholders from both health and
social care together to explore Information Governance issues is important.
Aligning processes such as PBPP and IRAS would enable streamlining and lighten the
bureaucratic burden.
A shift is needed in the perception of ‘secondary use’ of data, to instead seeing this as part of
core service delivery. This should be allied with investment in building a culture of
trustworthiness with the public. Delegates suggested that the terms ‘primary’ and ‘secondary’
in relation to data are unhelpful as there is increasingly a spectrum of data use. Can these
terms be dispensed with?
4. What steps need to be taken to improve public trust in relation to sharing of patients’
health and social care data?
Participants suggested that case studies could be developed to demonstrate the benefits of
data sharing across different areas (including direct clinical care, social care, research, design
and delivery etc.).
Providing clarity for those conducting research studies in relation to what public engagement
is required for different types of studies would contribute to building trustworthiness over
data use. Good practice could be shared in the form of guidance.
In response, other delegates commented that engagement is not just the responsibility of
researchers, and that having the right patient data in the right place at the right time (e.g.
during appointments) would contribute to trustworthiness over patient data. Different
“publics” engagement will need to be communicated with in appropriately different ways, if
trustworthiness in data sharing is to be developed across the health and social care sectors.
5. What lessons can be learned from IG experience elsewhere in the UK?
The case of care.data was discussed, and its unfortunate UK-wide impact on data sharing
acknowledged. Participants felt that there was a poor understanding of what represented
genuine public “engagement”. NHS Digital now seemed to be over-interpreting IG
regulations, which could lead to paralysis of data sharing, as the risks were perceived to
outweigh the benefits. It was felt that having an equivalent to Section 251 in Scotland would
offer no advantage, and was unnecessary.
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Successful applications to take research into practice could be accelerated by training, which
could include:
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Simplifying language
Top Tips
How to navigate the system
Sharing learning across borders, boundaries and sectors
Linking to effective reflective practice, appraisal and revalidation
Having approvers and applicants in the same room to enable sharing and joint learning
6. What aspects of IG best practice internationally could be adopted in Scotland?
Participants noted that there is poor public understanding of the purpose of data collection
and sharing/ utilisation. They felt that Section 251 was not of practical help in this context. It
was noted that in Germany cancer registration is poor due to the mandatory requirement for
informed (as opposed to implied) consent. Nordic countries use legislature to mandate data
collection, with few opt outs. However, it was suggested that cultural differences might
account for this, and that experience might be different in the UK.
Suggested ways of publicly demonstrating trustworthiness:
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Case studies – where science has made a difference
Explain technologically how far we have come
Embed early in education the benefits of NHS data and its use
Showing the differences between data collection in the NHS and other
[commercial (apple, google, supermarkets)] sectors (e.g. how the data is used, the
controls in place)
Developing a culture of shared values and principles across health and social care to support
integration could be facilitated by embedding the equivalent of the Caldicott guardian system
in Local Authorities. Could the Director of Social Work take this role?
7. What are the key enablers and obstacles to effective and efficient IG?
Participants addressing this question identified key issues relating to communication:
Recording and communicating the process of decision-making in IG could both help applicants
understand why information is required and support future decision-making.
A one-page map of IG of the ‘who’ and ‘why’ at national, local and research and development
levels would support shared knowledge and avoid losing tacit knowledge as people move
between roles.
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Common themes
The key issues identified above feature common themes:
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Inter-operability, including of IT systems, across health and social care is needed
Defining, mapping and decluttering the Information Governance landscape
Sharing knowledge, learning and processes
Abandoning the distinction between primary and secondary uses of data
Communication and engagement: across roles, across sectors, with the public
Concise, clear and visual ways of communication in the form of case studies (to
demonstrate the benefits of data sharing) and maps (to help practitioners and the
public navigate the IG systems) could be applied to a range of areas
Further legislation is unlikely to be of benefit
Need to further broaden the discussion of sharing of social care data - need for a
similar system to Caldicott in this sector.
What delegates thought of the event
All participants who took part in our event evaluation agreed that the Summit had begun a
process of consensus building around the future direction for Information Governance of
health and social care data utilisation and sharing in Scotland.
It was felt that the range of speakers ‘set the scene’ and brought together key relevant
information.
All participants agreed that the Summit provide a positive atmosphere for discussion and to
stimulate thinking, noting the good cross section of views and experiences and a willingness
to consider ambitious solutions during discussion sessions.
The strengths of the event were overwhelming viewed as bringing a wide spectrum of people
together; the perspectives presented by speakers and the topics discussed as framed by the
‘conceptual framework’; and the enthusiasm and sense of purpose generated throughout the
day.
In future events, participants would like more involvement of colleagues from social services,
health and social care Integrated Joint Boards, the third sector, and IG practitioners.
Next steps
The views of the Caldicott Guardians Group are to be sought on the outputs from the Summit,
as a first step to developing the programme for the next IG event. This will build on the key
themes identified above, and involve a wider range of participants, particularly from social
care.
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Annex
1. Conceptual Framework
Information Governance for Scotland’s Health and Social Care Data in the 21 st century
Information Governance (IG) is an essential requirement that enables NHS Scotland and its partner
organisations to deliver services that comply with the law, using processes with the appropriate level
of security and accountability and which command public trust. IG covers a whole framework of
interlinking functions including:
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Information and records management
Privacy codes
Adherence to access to information and other legislation
Risks relating to confidentiality, integrity and availability of information
In recent years the ongoing expansion in the generation of health data, combined with the widening
group of health and social care delivery partners with whom information sharing is desirable, and the
blurring of lines between direct care, supporting services and research, means that IG has become
much more complex and difficult. Public anxieties about societal use of personal data, stimulated by
events such as the ill prepared launch of care data, add to that complexity. The public have an absolute
right to know how their health and social care data are being used in the 21st century. Currently the
governance approach to data use and data sharing is often characterised by caution, confusion and
inconsistency. There is an urgent need to develop a coherent approach to describing what systems
are in place to use data “safely”, and in particular what individual and societal benefits result from
that use. This will not be straightforward, however, building on Scotland’s strong tradition of common
purpose, social engagement and expertise in law, ethics, privacy and regulation, and by taking a coproduction approach, it should be eminently feasible.
Information Governance needs to continue to develop in the light of changes to care models, clinical
practices, technology and the law. Above all, it needs to be sensitive and responsive to public
acceptability. Rapid advances in “Big Data” and “Cloud” technology, and privacy-enhancing
technology point to a need for a more strategic approach, rather than the organic, reactive response
which has characterised previous years. At present in NHS Scotland, information governance too often
runs the risk of being perceived as a blocker, rather than an enabler, of excellent patient care and
research. The Caldicott3 Review, and the Scottish Government’s response to the consultation
(attached) offer an opportunity to think more strategically about the type of information governance
models that are needed now and over the next five years to enable direct care, and all activities that
support care in the widest sense, including research. It’s crucial that we take this opportunity and get
it right, avoiding potential policy “elephant traps” such as widespread patient opt out schemes, which
could have negative effects not only on future delivery of care, but on how care is delivered currently.
NHS Scotland is a trail blazer in terms of health and social care integration and information governance
must not be seen as a barrier to implementation of this publically supported policy. The starting point
must be “What are the business needs?” Identification and mitigation of information governance risks
should follow, rather than the other way round.
This Information Governance Summit is the first in what is expected to be a series of iterative events.
The aim of this initiative, modelled on the approach adopted by the Global Alliance for Genomic
Health, is to accelerate progress in health and social care provision and research by helping to establish
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a common framework of harmonized approaches to enable effective and responsible sharing of
information for public good.
To achieve this we propose to work collaboratively to:
Convene: Bring together stakeholders from different sectors and localities to share information,
establish best practices, and enable interoperability across the broadest possible group.
Commit to Responsible Data Sharing: Work together to promote the highest standards for ethics and
ensure that citizens and publics are engaged, and able to inform and understand how information is
shared to advance individual and human health.
We look forward to welcoming you to the first workshop, the theme of which is:
“In the context of Caldicott3, begin a process of consensus building around the future direction for
Information Governance of health and social care data utilisation and sharing in Scotland.”
2. List of speakers
Event chair
Professor Sir Lewis Ritchie
Context and challenge
Dr Catherine Calderwood, CMO
“Information Governance – outlining the landscape”
Dr Hugo van Woerden
“First do no harm”
Dr Libby Morris
“Accessing Data within Secondary Care: Why? How? When?”
Dr Hilary Dobson
“Three big ideas that are revolutionising big data science in
health research”
Professor Corri Black
"Building a public interest mandate in responsible data use"
Professor Graeme Laurie
Reflections on plenaries and introduction to the breakout
session
Professor Sir Lewis Ritchie
“Data sharing in the era of health and social care integration–
the users’ perspective”
Ian Welsh
Next Steps
Dr Andrew Fraser
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