NIHR Information Strategy 2015 - 17
Version 2.0
1. Document Control
This is an NIHR controlled document. On receipt of a new version, please destroy all
previous versions (unless a specified earlier version is in use throughout the project).
1.1 Revision History
Author
NIHR
Version
1.0
Date
April 2013
NIHR
2.0
Sept 2015
Brief summary of change
1st version of NIHR Information Strategy as
signed off by NIHR IS Programme Board.
2nd version of NIHR Information Strategy as
signed off by NIHR Information Strategy
Board.
1.2 Distribution
Name
NIHR
NIHR
Version Date
1.0
April 2013
2.0
Sept 2015
Role
Version Date
1.0
April 2013
Approval
1.3 Approvals
Name
NIHR IS
Programme Board
NIHR Information
Strategy Board
2.0
Sept 2015
NIHR Information Strategy 2015
Copyright © the National Institute for Health Research. All Rights Reserved.
2. Contents
1.
Document Control .......................................................................................................... 2
1.1
Revision History ...................................................................................................... 2
1.2
Distribution .............................................................................................................. 2
1.3
Approvals ................................................................................................................ 2
2.
Contents ........................................................................................................................ 3
3.
Executive summary........................................................................................................ 4
4.
Introduction .................................................................................................................... 5
5.
The NIHR ....................................................................................................................... 5
6.
Business context ............................................................................................................ 6
7.
Background to Information Developments in the NIHR .................................................. 6
8.
The NIHR Information Vision.......................................................................................... 8
9.
Guiding principles for information in the NIHR................................................................ 8
10.
Business capability requirements ............................................................................... 9
10.1
Best Research and People ................................................................................... 10
10.2
Best NIHR – .......................................................................................................... 10
10.3
Significant Enablers – ........................................................................................... 11
11.
11.1
Delivering the Strategy ............................................................................................. 12
Outline of Approach and responsibilities ............................................................... 12
NIHR Information Strategy
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3. Executive summary
The NIHR vision is to improve the health and wealth of the nation through research. In its
ninth year, the NIHR is maturing as an organisation and the information and systems which
support it are also maturing. Alongside continuing to have a significant positive impact, the
NIHR faces challenges ahead with economic austerity, changes to the external environment
(NHS, academia and health research) and the need for increased internal collaboration.
Since the first NIHR Information Strategy (2013) there has been increased collaboration,
improved business intelligence and the implementation of significant NIHR and Business
Unit information systems.
The vision for information in the NIHR over the coming two years is to ensure that fit for
purpose information and actionable insight is in the right place at the right time for those who
need it, in support of the overarching NIHR vision.
This Strategy sets out the detail required in order to realise the vision, including guiding
principles; the business requirements; and the governance and expectations for the different
elements of the NIHR.
There is a particular focus on collaboration in support of cross-NIHR decision making; usercentric, incremental development; efficiency, including reducing the data collection burden;
and utilising learning from within the NIHR and external organisations.
The business requirements are grouped in to two categories, ‘Best Research and People’
and ‘Best NIHR’:
1. Supporting the delivery of research that is funded and managed through the NIHR.
Information will be made available simply and efficiently to help select, prioritise,
resource, fund, project manage and capture results from research projects and
training pathways. The aim is to generate consistent, transparent information to
reduce delays and duplication of projects, and ensuring that the portfolio of research
projects and training programmes meets the country’s needs;
2. Supporting the most effective management of the NIHR as an organisation.
Information will be made available to make the management operation of the NIHR
cohesive and efficient within and across its inter-organisation boundaries, avoiding
duplication of management tasks, delays in decisions and waste of resources.
The business requirements are supported by a number of significant enablers, including
standards, information governance, people and a central function to provide NIHR level
business intelligence.
NIHR Information Strategy
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4. Introduction
This strategy sets out the vision and guiding principles for Information in the NIHR. Prior to
that it sets the context of the NIHR and the background to information developments since
the last strategy (2013). It goes on to outline the business capability requirements and key
enablers to support them. It finishes by describing the governance and the expectations on
those involved in executing the strategy.
The strategy has been developed by the NIHR Information Strategy Board which includes
representatives from the NIHR and other organisations, including the Health Research
Authority and Medicines and Healthcare products Regulatory Authority.
It is primarily for NIHR management and operational employees however is also available to
anyone interested in the NIHR Information Strategy.
5. The NIHR
The National Institute for Health Research (NIHR) was established in 2006 and has
transformed research in the NHS. The Vision, Mission and Aims of the NIHR1 are:
Vision
To improve the health and wealth of the nation through research.
Mission
To provide a health research system in which the NHS supports outstanding individuals
working in world-class facilities, conducting leading-edge research focused on the needs of
patients and the public.
Aims
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Establish the NHS as an internationally recognised centre of research excellence
Attract, develop and retain the best research professionals to conduct people-based
research
Commission research focused on improving health and social care
Strengthen and streamline systems for research management and governance
Increase the opportunities for patients and the public to participate in, and benefit
from, research
Promote and protect the interests of patients and the public in health research
Drive faster translation of scientific discoveries into tangible benefits for patients
Maximise the research potential of the NHS to contribute to the economic growth of
the country through the life sciences industry
Act as sound custodians of public money for the public good.
The NIHR has undergone a period of rapid growth since its inception; this strategy reflects
that in terms of both processes and systems the NIHR is still maturing.
1
http://www.nihr.ac.uk/about/mission-of-the-nihr.htm
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6. Business context
The Department of Health, through the NIHR, is responsible for approximately £1bn of
expenditure on research and research infrastructure. Economic austerity brings increased
pressure on the NIHR to ensure greatest impact and best value for money. Therefore,
delivering and demonstrating impact is a key component of this strategy. Furthermore, we
need an improved understanding of the activity taking place within the NIHR and
performance of the NIHR health research system to support effective decision making.
By design, the NIHR is organised into a number of separate Business Units2 to deliver the
aims of the Government’s Health Research Strategy and to support the wider Life Sciences
Strategy3. This design brings opportunities and challenges, for example the benefit of
different organisational approaches or challenges of working across organisational
boundaries. This strategy includes the provision of tools which support working in a
geographically dispersed organisation.
In addition, the period covered by this strategy also sees the retendering of several NIHR
Business Unit contracts which brings an associated risk of disruption. This strategy
highlights the need for timely, accurate information and actionable insight which supports
decision making and collaborative working whilst delivering the Government’s policy
objectives. It also highlights the need to provide a consistent experience to stakeholders
both within and outside of the NIHR.
The external environment which the NIHR interacts with has also been subject to significant
changes. The NHS, academia and local government are all experiencing change as is the
wider research environment, with greater emphasis on open publication and accessible data.
This strategy is grounded in the need to make research information easily available to those
who need it and allows NIHR to understand its portfolio of research and training and to
demonstrate success from its investments. It also focuses on the continued need to support
the development of people within the NIHR and wider research community supported by the
NIHR.
The NIHR has led the way in many areas of health research, including through adding value
in research and open access publications. This strategy aims to support continued
innovation in the NIHR.
7. Background to Information Developments in the NIHR
Since its establishment in 2006, the NIHR has been developing a series of information
solutions to support its business needs. Some of these were developed and deployed in
tactical response to individual Business Unit requirements and were a reflection of the need
to overcome immediate issues rather than the progressive implementation of a strategic
vision for information across the NIHR as a whole.
2
Also known as ‘Coordinating Centres’ the primary business units are the NIHR Central Commissioning Facility (which includes
the NIHR Office for Clinical Research Infrastructure), the NIHR Evaluations, trials and Studies Coordinating Centre, the NIHR
Trainees Coordinating Centre and the Clinical Research Network Coordinating Centre.( http://www.nihr.ac.uk/about/how-thenihr-is-managed.htm)
3
https://www.gov.uk/government/publications/uk-life-sciences-strategy
NIHR Information Strategy
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The first version of this strategy (April 2013) sought to capitalise on the increasing maturity of
the NIHR and its information systems and set out the areas required to support a large
scale, dispersed organisation. Since then, there have been a number of successful
developments which we can build on for the future:
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The NIHR Data Standards and Design Authority was established, agreed the first
NIHR core dataset and implemented a data standards maturity model to support the
implementation of the dataset in the most efficient way possible;
The second generation of the NIHR’s electronic collaboration tools have been
implemented (the NIHR Hub);
In direct response to the Finch Review, the NIHR has adopted the “gold” approach to
Open Access publication of the research it supports, and the NIHR Journals Library
(http://www.journalslibrary.nihr.ac.uk/) has been established and includes full
interactive journals;
An increased level of business intelligence has been available for internal decision
making and system improvement, for example the NIHR Metrics Dashboard;
There has been increased availability of data for external use. Examples include the
publication of NIHR research programme success rates and performance information
on the initiation and delivery of clinical research, and;
Business units are procuring new technologies with the option for NIHR wide use.
Other significant initiatives are underway and will be developed over the next period:
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The implementation of a new NIHR Business Intelligence function from April 2015,
which will focus on providing useful and timely NIHR wide information, analysis and
insight;
A project (infoNIHR) to bring together key data from across the NIHR is underway
and has strong buy in from across the NIHR Business Units;
A system for capturing equalities information is ready to go live and will support the
NIHR in understanding the demographics of researchers interacting with it;
Investment in a refreshed UK Clinical Trials Gateway that will not only provide better
access to information on trials, but also allow members of the public to consent to
participate. This should help accelerate trial recruitment by providing a list of
members of the public who have consented to be contacted for trial recruitment.
The procurement of an NIHR wide customer relationship management system to
support interaction with external stakeholders.
Ongoing enhancements to all the Business Units systems to ensure that they
continue to be fit for purpose.
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8. The NIHR Information Vision
The vision for information in the NIHR is to ensure that fit for purpose information and
actionable insight is in the right place at the right time for those who need it, in support of the
overarching NIHR Vision.
9. Guiding principles for information in the NIHR
1. There will be collaboration across the NIHR to ensure that there is a consistent user
experience, that data are joined up and knowledge is shared. We will collaborate on
decision making, ensuring that business and technical people have an equal voice
and that the needs of the NIHR are fully considered;
2. Data will only be collected to meet business need. They will be collected once and
shared in order to use it many times ensuring the burden of data collection is
minimised;
3. Information will be analysed in a way which helps provide evidence and insight for
decision making (including datasets which are baselined),to identify trends, and to
enable predictions of future activity;
4. Business processes and people will be considered before the adoption of
technology. Technology will be utilised in order to provide efficiency and enhance
existing approaches, not simply to replicate paper-based methods;
5. Information systems and datasets will be fit for purpose and developed using an
incremental approach, i.e. ‘useful today is better than perfect tomorrow’;
6. Scalability, flexibility, security and interoperability will be considered when developing
systems and datasets to ensure that there is an appropriate amount of security and
future proofing;
7. We will place users at the centre of developments to ensure that we provide
information and systems which are available in the way they need them and when
they need them;
8. We will build on our expertise and learn from others to ensure that we are well
placed to take advantage of new approaches and technologies and compare
processes and data;
9. All developments must be a demonstrable good use of public funds;
10. Information and systems are valuable assets and will be reused where possible
and decommissioned when no longer required;
11. All components of the NIHR will operate within the relevant statutory and
mandatory frameworks and will align to government strategy.
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10.
Business capability requirements
This strategy divides the ‘business’ in to two main areas:
3. Supporting the delivery of research that is funded and managed through the NIHR.
Information will be made available simply and efficiently to help select, prioritise,
resource, fund, project manage and capture results from research projects and
training pathways. The aim is to generate consistent, transparent information to
reduce delays and duplication of projects, and ensuring that the portfolio of research
projects and training programmes meets the country’s needs;
4. Supporting the most effective management of the NIHR as an organisation.
Information will be made available to make the management operation of the NIHR
cohesive and efficient within and across its inter-organisation boundaries, avoiding
duplication of management tasks, delays in decisions and waste of resources.
Diagram 1
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10.1 Best Research and People
A. Research and training information available. (What do we know?)
Information relating to NIHR funded research available for researchers, evidence
users, patients, public and managers to ensure that the knowledge generated by the
NIHR is available to those that are best placed to use it.
Information relating to the support of people who are funded by NIHR ,including
trainees, researchers and clinicians available to those requiring an understanding of
the research education landscape.
B. NIHR wide portfolio management and people development. (Should we do it?
Who should do it?)
Making the details of NIHR and other research available for decision makers to
support decisions regarding what research should be commissioned, maintained or
stopped.
Information about the NIHR training portfolio available to support decisions about
who to support and how to support them.
C. Feasibility assessment based on research capacity and capability (Can we do
it?)
Providing resources which support the identification of research resources available,
including participants, researchers, clinicians, equipment and systems across the
entire research journey.
D. Performance management of research projects (Are we doing it well?)
An NIHR wide consistent view of the performance of research projects to assess
whether they should be continued, changed or stopped.
E. Demonstrate impact from the NIHR’s investment (How well did it work?)
Capture and make available for the whole of the NIHR the impact of research
undertaken and information on the researchers who have been supported by the
NIHR.
10.2 Best NIHR –
F. Make collective decisions across the NIHR and wider research communities
(Are we making decisions as NIHR?)
Provide actionable insight at an NIHR level to support decision making. This will be
supported by information from other organisations where relevant and possible.
G. User-centric approach (Are we making it easier?)
All systems development will consider how it can put the user at the centre of the
system, working towards a common user interface to systems and re-use of data
where possible.
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H. NIHR capacity and capability planning and management (Who can do this
work?)
Understanding how career pathways support researchers over time to highlight and
understand future gaps in provision and ensure that NIHR invests in the next
generation of research leaders.
Ensuring that information is available to support capacity planning and management
within the NIHR.
I.
Design and operate processes across research, academic and other
organisational boundaries (Are we working together?)
Support effective, joined up working throughout the NIHR through the provision of
effective collaboration tools, useful information relating to processes and common
standards and design.
10.3 Significant Enablers –
J. Access patient information
Where appropriate, in line with all legislation (particularly the Health and Social Care
Act 2012 and the NHS Constitution) and in formats that promote its wider safe and
secure use, patient information should be utilised to support research. Primarily the
CPRD should be considered as the safe, legal, and strictly safeguarded source for
this information. If this is not appropriate or possible, then the NHS Health and Social
Care Information Centre should be the secondary point of access to this information.
It is critical to ensure that data and technology are put safely to work for the benefit of
patients, service users, citizens and the professionals who care for them, to help
ensure that health and care in this country is improving and sustainable as well as
supporting the wider Government strategy for economic recovery.
K. Data and Systems standards, interoperability
To help ensure data are entered once and shared appropriately, data and system
standards will be created by the NIHR. These standards will be agreed by the Design
Authority and implemented into all new systems. Systems that are operational will be
required to adhere to these standards within a defined time scale to ensure that
interoperability of systems and sharing of data is possible.
L. User Experience and collaborative tools
The NIHR Design Authority will develop and promote a consistent and intuitive user
experience which should be applied to new systems. Developments in working
practices will be considered and incorporated to ensure that systems and information
are available when, where and how required by users.
Tools to support the formation and development of NIHR communities and
collaboration across the NIHR will be implemented as required. The primary tool will
be the NIHR Hub (http://home.nihr.ac.uk).
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M. Information Governance
The NIHR expects all its Business Units to operate to the appropriate standards on
Information Governance. Where applicable, the NHS Health and Social Care
Information Centre operated Information Governance (IG) Tool Kit should be utilised
for assessing Information Governance standards.
NIHR Business Units must ensure and promote good Information Governance across
all of their information assets and areas of responsibility.
N. NIHR Centre for Business Intelligence
The NIHR will form its own Centre for Business Intelligence to draw together
appropriate data from across the NIHR to provide NIHR level information and
actionable insight.
The NIHR Centre for Business Intelligence will bring together a network of Business
Intelligence professionals from across the NIHR to support the provision of
information and insight.
O. People
Effective use of information and systems is only possible if people have the
necessary skills and knowledge. There will be a focus on ensuring that those who
provide and use information and systems have the necessary training and support to
enable them to make best use of the information available.
11.
Delivering the Strategy
11.1 Outline of Approach and responsibilities
Governance of the strategy will remain in the oversight of the NIHR Information Strategy
Board. Chaired by the Department of Health and with membership from all the business
units of the NIHR affected by, or implementing projects under, this strategy. The Information
Strategy Board supports and enables the wider strategic goals of the NIHR through the
NIHR Strategy Board, which meets quarterly. Diagram 2 below explains the relationship of
the Information Strategy Board and the sub groups that report into it.
The NIHR IS Board will provide oversight of the development of new approaches, methods,
technology and achievements both inside and outside the NIHR.
The Information Strategy Board will also be responsible for the maintenance and review of
the key high, level risks of implementing this strategy.
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NIHR Strategy
Board
NIHR
Information
Strategy Board
NIHR Data
Standards and
Design Authority
Data Standards
Working Group
NIHR Centre for
Business
Intelligence
NIHR Business
Units
Coding and
Classification
Working Group
Diagram 2
To ensure that information activity is developed in a coherent way the NIHR IS Board will
review suitability, strategic fit, progress and delivery. Specific members of the NIHR IS Board
are responsible for the enablers identified above.
The NIHR IS Board will be supported by the Data Standards and Design Authority. The
NIHR Information Strategy will be underpinned by local information strategies due to work
being delivered at the NIHR (corporate) and local levels and the need for local systems to be
designed and developed with integration in mind.
Expectations for Business Units and the Department of Health include:
− Upholding and maintaining the guiding principles set out in this strategy;
− Contribute timely, fit for purpose data and provide assistance in the creation of
information from the data provided.
− Implement system and data standards.
− Adopt corporate systems where mandated
− Ensure that there is appropriate information governance in place as set out above.
Examples of activity to be carried out corporately include:
− Provision of NIHR Business Intelligence and associated infrastructure
− Data and interoperability standards
− The NIHR Hub, website and intranet
− Information systems which support multiple business units
Examples of activity to be carried out by business units include:
− Provision of business unit specific business intelligence
− Delivery and enhancement of local information systems
− Business unit infrastructure and hardware
− Compliance with this strategy
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