A national Vision for Scotland’s health data

Before IHDP was established, it was recognised that Scotland was awash with health data but poor at utilising that data to improve patient outcomes.

As in many other countries, health data in Scotland are fragmented and sit in multiple places and systems which don’t speak to each other. The organisations involved in collecting, managing and using data are numerous and dispersed, and subject to data sharing regulations. So there are technical problems in terms of interfacing the systems, and organisational barriers around data sharing. Ultimately, despite the wealth of data, and efforts to unlock it, Scotland was still information poor.

IHDP initially prioritised cancer, as an area generating huge volumes of data which could be better used to enhance the quality of patient care and improve survival rates. But it was difficult to see how to bring change about without a fundamental examination of the significant IT and information governance barriers, and agreement around who should take the lead. NHS Scotland had to continue to deliver its own clinical and ehealth priorities – “business as usual” - making it hard, given time and resource constraints, to map out and implement transformational change.

And so IHDP was created.

IHDP sits outside of traditional NHS structures and governance frameworks giving the programme the freedom to try new and untested ways of working and to innovate with data.

We were given the permission, and had the credibility and trust to be able to take stock of national perspective(s), identify potential players and connect the moving parts to start to work towards a national vision – a vision with the patient at its core and which resonated with all the organisations involved.

We recognised different types of innovation that could make a practical difference. We were less focused on shiny technology and more focused on innovating the ‘how’ - how do we make the best use of our rich data assets to provide rich information?

We recognised that our key role was to broker relationships and facilitate action in others to reap the benefits of investing effort in working together.

We were equipped from the outset with highly credible leadership that was respected for its expertise, but also listened to others; trusted others’ judgment on the new and untested; was sensitive to local context, while understanding the broader landscape; and considered the risks of NOT taking action (rather than just the risk of doing things). We made sure that the activities we initiated always related back to the vision to deliver value to patients, healthcare professionals and the wider NHS.

Over the period of IHDP’s existence, partners have come to recognise that working in this new way, across organisations and sector boundaries, has resulted in benefits not just for patients and staff but for organisational, team and individual development, and the delivery of national objectives.

Now Scotland is cancer data AND information rich.

Patient clinical care can now be based on the availability of much more extensive and timely information to improve health outcomes and the quality of health care.

NHS organisations are aligned around the vision for national cancer data needs, which has reduced fragmentation and duplication of effort.

There is now a clear national vision for the future of Scotland’s health data, which is widely shared.

About IHDP

IHDP brings leadership and focus to realise the vision of harnessing the power of informatics to link NHS Scotland’s rich data assets and deliver value rapidly to patients, healthcare professionals, and the wider NHS.

All high performing healthcare systems internationally are supported by systematic data collection, collation, analysis, and sharing. NHS Scotland aspires to be recognised as one of those high performing systems and the IHDP has been established to provide the strategic framework to achieve this aim.

IHDP’s vision is to use data and analytics to drive improvement in health outcomes. To do this, the programme brings together expertise in clinical practice, data science, and research. IHDP aims to achieve change by focusing innovation across many fronts and with a wide range of stakeholders.

The programme’s initial focus is to develop and oversee the implementation of a cancer intelligence framework for Scotland. It also has a remit to apply learning to other clinical areas.

IHDP is funded by the Scottish Government and supported by an additional £2m announced in the cancer strategy, Beating Cancer: Ambition and Action, published in March 2016.

IHDP aims and objectives

  • harness the power of healthcare informatics to deliver value to patients, healthcare professionals and the NHS through collaboration with academia, industry and the third sector
  • act as a ‘translational hub’ between informatics and the NHS, Government, patients and citizens in Scotland
  • in the first instance, develop a national cancer data framework for Scotland, linking primary, secondary, and ultimately social care data to improve patient outcomes
  • support a Learning Healthcare Systems approach


Scotland is awash with health data but poor at utilising that data to improve patient outcomes. It was recognised that much more could be done to improve health intelligence from data.

Cancer was prioritised initially, as an area with a large volume of data which could be better used to enhance the quality of patient care and improve survival rates. Learning from this sector will help other healthcare areas to improve data utilisation.

Despite a decrease in the number of cancer deaths over the last decade, Scotland’s cancer outcomes continue to lag behind other European countries.

Age-standardised mortality rate per 100,000 population

Age-standardised mortality rate per 100,000 population.

Building on the lead from the Scottish Cancer Task Force, IHDP has worked to ensure that Scotland makes better use of its rich cancer data assets. Through informatics, data analytics, digital health, genomics and stratified medicines this transformation of data assets will create the kind of data-driven care to which the NHS has long aspired.

The creation of a Scottish Cancer Intelligence Framework (SCIF) offers potential benefits to patients, clinicians, service planners, policy makers, researchers and others.

These include the ability to:

  • enable clinicians involved in the care of people living with cancer to have direct (near real time) to cancer data
  • enable people living with cancer access to their own data to facilitate supported self-management
  • facilitate improved cancer audit in order to develop an ethos of continuous quality improvement, enabling inappropriate variations in treatment and outcomes to be identified and addressed
  • support better performance management and service planning of cancer services
  • benchmark cancer services and outcomes in Scotland with the rest of the UK and more widely
  • enhance research and innovation opportunities in Scotland

Creating a cancer intelligent framework for Scotland

Utilising Scotland’s rich cancer data assets to facilitate data-driven care for:

Creating a cancer intelligent framework for Scotland
Cancer intelligence data flow

Using evidence in healthcare systems

IHDP has commissioned an evidence review to further explore how healthcare systems can ensure evidence is well used to inform decision making.

IHDP’s Guiding Principles reflect many key factors outlined in the evidence review which are central to understanding and implementing change in complex healthcare systems.

IHDP impact story overview

What we did

  • Understand the need for change.
  • Build collaborative relationships and partnerships.
  • Bring expertise together from across sectors.
  • Take a national approach.
  • Set up and facilitate programmes of work.
  • Take an agile ‘test and learn’ approach.

Key steps

Engage stakeholders at the outset and actively seek to tap into the knowledge and expertise of those delivering health services.

Be pragmatic and balance gathering useful insight with keeping up momentum. Aim for representative rather than comprehensive intelligence, and ensure ample discussion.

Identify the right problems to address for the desired outcomes rather than responding to visible problems.

Actively look to understand your stakeholders and trust their expertise - don’t assume you already know all the answers.

Invest time, effort and resource into developing relationships and areas of work.

Build the team around the vision and bring in the right people, with the right expertise and contacts, at the right time.

Aim for transparency and visibility at all levels to gain support in the change process.

Allocate the right resource to the right place, and don’t assume that resource needs are necessarily financial.

Take an agile and iterative approach to ensure plans respond to emerging needs, while keeping focussed on the overall vision.

Be open to different ways of working and new ideas.

Who with

  • Health sector
  • Research community
  • Digital and eHealth community
  • Patient representatives
  • IHDP programme partners

Key steps

Think about how wide your stakeholder groups need to be, and how you will identify and reach them.

Don’t assume you already know their views and experiences. Consider how you will find out about their contexts, challenges and enablers.

How they reacted

  • They believe the IHDP vision and approach are credible and trustworthy
  • They believe the IHDP approach will improve service delivery, and patient outcomes and experience

Key steps

Demonstrate ‘skin in the game’ to show commitment and generate credibility.

Clearly link your plans and activities to national priorities and local needs to secure engagement.

What they learned and gained

  • Stakeholders see the benefits of a national collaborative approach to cancer intelligence
  • Improvements in data assets and better access to data and more useful intelligence from data

Key steps

Work collaboratively to identify where national approaches can meet local needs, and expedite solutions that can work for all parties.

Consider where greater investment at the outset may lead to greater gains in the longer term.

Take a ‘test and learn’ approach and support exploration and learning from ‘failure’.

Share learning about what doesn’t work or add benefit, to prevent others from investing resource in similar endeavours.

What changed

  • The approach to cancer intelligence is more user-led, collaborative and effective
  • Take innovative approaches

Key steps

Ensure the relevance and usability of solutions are clear to stakeholders, using appropriate mechanisms for different audiences.

Capture and act on knowledge gaps identified along the way.

What difference will it make

  • Benefits for the cancer sector:
    • Policy makers will be better able to monitor progress against strategy commitments and identify areas for improvement
    • Better service planning, slicker audit, informed performance management, and benchmarking, leading to continuous quality improvement
    • Direct clinician access to data in near real time to improve patient care
    • Enhanced research and innovation opportunities
  • Transferable learning to other healthcare areas