What we did
Understand the need for change
From the very beginning, IHDP recognised the importance of being outward-looking and able to tap into the knowledge and expertise of those delivering cancer services. We wanted to ensure that implementing the recommendations of the independent review of the Scottish Cancer Registry was informed by the views of the wider community (see below).
IHDP issued an open invitation to participate in consultation sessions in each of Scotland’s five cancer centres to better understand:
- data collection, entry, linkage and accessibility, benchmarking
- how cancer data is managed
- IT infrastructure
- staffing, workload and capacity what intelligence is required from data
- any information governance issues
- West: Beatson Cancer Centre, Glasgow, plus satellite radiotherapy service in Lanarkshire.
- East: Western General Hospital, Edinburgh.
- North: Ninewells Hospital, Dundee; Aberdeen Royal Infirmary; and Raigmore Hospital, Inverness.
In practical terms, it can be difficult to find the ‘right people’, access contact details, and schedule sessions to suit all interested parties. IHDP took a pragmatic approach to balance gathering useful insight with keeping up momentum, by:
- using known contacts to cascade invitations across cancer networks and areas of expertise
- ensuring a representative - rather than comprehensive - mix of participants for each session
- allowing enough lead time for participants to shape the agenda to showcase their work
- ensuring ample time for discussion to generate insight
We made sure we identified the right problems to address for the desired outcome, rather than observing and reacting to ‘visible problems’ and reaching for ‘ready solutions’.
IHDP and Scottish Cancer Registry staff also sought to learn from Public Health England’s cancer registry (NCRAS) team as a possible source of solutions, which were shared during cancer centre sessions. Initially, it was thought Scotland might develop a similar approach to that taken in England, but it quickly became apparent that something more tailored for Scotland was required.
It was important to be open-minded and recognise that a seemingly ‘ready-made’ solution would not necessarily be appropriate. Future users of the system needed to be involved at the outset so that their requirements could be incorporated. IHDP quickly understood that the ’easy way’ is not always the best way.
It was widely acknowledged that there were large data gaps which needed to be addressed. The review aimed to identify recommendations for improving registry content, efficiency, accuracy and capability for benchmarking with other countries.
Importantly, the review was not carried out by IHDP, but by an independent expert in this field, Dr Dyfed Wyn Huws, Director of the Welsh Cancer Intelligence and Surveillance Unit, in consultation with a wide range of stakeholders.
The review offered 24 recommendations in 5 key areas to inform the modernisation of the Scottish Cancer Registry to improve cancer intelligence:
- Data sources
- Cancer registration system
- Cancer data platform
- Data access and information governance
- Data outputs and reporting - health intelligence
Using the recommendations of the independent review of the Registry, and user feedback, IHDP and PHS co-created the Scottish Cancer Registry and Intelligence Service (SCRIS) to form the backbone of the Scottish Cancer Intelligence Framework (SCIF).
Build collaborative relationships and partnerships
IHDP’s approach to collaboration was grounded in on-going dialogue to understand needs and barriers to progress, and thinking ‘what can we do to help?’
Building relationships and brokering partnerships
- IHDP actively sought to connect key stakeholders across clinical, eHealth and policy sectors. Our Director was able to communicate across the busy landscape of the cancer sector and multiple agendas, and pull together the right partners in a common purpose.
- As an independent programme sitting outside traditional Scottish Government and NHS governance structures, IHDP was able to span the cancer sector, and act as a translational hub to bring others together and identify synergies.
- At the same time, strong links with Scottish Government and strong connections with NHS networks enabled IHDP to have visibility and traction at policy and service levels.
- As Chair of the Scottish Cancer Taskforce, the Director was well known across the sector, and aware of the ‘key players’ to involve on the first instance. This provided a good foundation to build positive relationships around a shared vision.
Meaningful engagement
- IHDP had ‘skin in the game’ and invested time, effort and resource in developing relationships and areas of work.
- We sought to understand where any resistance lay, and the nature of that resistance - for example whether it was historical, technical, resource-driven, or cultural – to find workable solutions.
- IHDP was able to judiciously offer financial support and other resources, by ‘pump priming’ areas of work and funding specific roles (for example, a PHS programme manager). This helped to remove resource-related barriers to progress.
- We devolved ownership and accountability of projects to embed new ways of working and promote our key messages of collaboration and inclusivity, while maintaining appropriate levels of influence over direction through continuous engagement.
Bring expertise together from across sectors
We created a small and agile team from diverse sectors who could understand not only the needs of this emergent and future-facing programme, but also what would be required to deliver it. Team members often split their time across IHDP and their ‘day job’, which brought further connections and insight.
Building the team from across sectors mobilised:
- diverse perspectives and approaches
- sector knowledge and understanding
- existing relationships and contacts
- reach into a wide range of sectors
- opportunities to identify synergies and potential for collaboration
For example:
- IHDP’s Director and Deputy Directors (past and present) are clinicians, bringing vital experience and insight, as well as clinical networks to this health data transformation programme
- Our Chief Information Officer was flexibly seconded from the Scottish Government eHealth team, supplying vital expertise in the eHealth landscape
- Our Chief Operating Officer was seconded from the University of Edinburgh, strengthening links with academics and researchers
- Our Programme Manager and impact workstream lead was seconded from Cancer Research UK, bringing an understanding of, and links with, third sector researchers and patients.
IHDP was outward looking and sought the knowledge and expertise of those involved in delivering health services, at all levels.
We trusted in the expertise others had to offer, and distributed ownership to allow that expertise to be applied.
Take a national approach
IHDP promoted a national and transparent approach, and facilitated taking local learning nationally.
Transparency and visibility at all levels are important to gain support in the change process, from the most senior management levels to those ‘on the ground’ delivering services.
Collaborating with a national project offers opportunity for local partners to feed into the national structure, be more visible, hear from others, and contribute to a collective effort to find solutions.
A national conversation on Information Governance
Having encountered a number of Information Governance challenges at its inception, IHDP has been stimulating national debate on the challenges of Information Governance (IG) in the healthcare sector and ways to overcome them. This has provided the springboard to consensus building around the future direction for Information Governance in health and social care data utilisation and sharing in Scotland, led by the Scottish Government.
Information Governance Summit
Set up and facilitate programmes of work
A diverse range of projects contributed to developing the SCIF (see IHDP programmes of work overview).
IHDP facilitated, joint-funded and contributed expertise to a range of work, which transformed national cancer intelligence, including:
- key national programmes of work, e.g. developing SCRIS
- discrete innovation projects
- proof of concept projects
- projects to support a national approach
- local developments, enabling sharing learning nationally
- partnerships with industry
- collaborations with specific Health Boards
IHDP aligned these areas of work with the ambitions of the SCIF, enabling a joined-up national approach, rather than siloes of work.
Allocating the right resource to the right place.
Judicious application of the right resource in the right place helped to expedite progress. While targeted funding and ‘pump priming’ areas of work is required in some instances, we recognised that resource needs are not always directly financial. IHDP supported developments by:
- freeing up expertise by funding temporary backfill secondments
- funding programme management support
- supplying in-kind support such as administrative and secretariat resource. Lack of admin support can be a fundamental blockage to getting things off the ground and maintaining momentum.
- directly contributing, or facilitating access to, relevant expertise
Removing practical barriers to progress by targeting resource not only kept work moving at pace, but also facilitated collaboration. (See ‘Resources for innovation’ for an overview of the types of resources used in the IHDP approach).
Take and agile and ’test and learn’ approach
Vision-led, yet responsive
Our approach was to understand what was required of a ‘Cancer Intelligence Framework’ to help people do their jobs effectively, and to generate programmes of work to meet those needs.
Viewing cancer intelligence as a ‘framework’, rather than a ‘system’, built flexibility into what this could look like and how it could work. This fostered responsiveness and creative thinking.
IHDP evolved in response to emerging needs, by constantly monitoring national issues, while keeping focused on the overall vision.
‘Start up’ mindset and lateral thinking
IHDP was open to different ways of working and new ideas. This approach ‘set the tone’ for SCIF developments and fostered a ‘test and learn’ approach:
- an exploratory approach enabled emerging ideas, opportunities, issues and nascent work to be captured, explored, and acted upon as appropriate
- balancing the need to allow time for exploration with the need to stimulate action, and move at pace
- actively seeking opportunities for innovative thinking and action
- acting as a catalyst for action and change
- applying and encouraging an iterative approach
- supporting exploration and enabling learning from ‘failure’
As an independent programme, IHDP was able to ‘pump prime’ exploratory work, and work which provided a lever to unlock progress in other areas.
We were able to provide development resource in ways which organisational budgets would have found difficult. For example, we took on the financial risk which enabled others to experiment and explore.
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
Impact Stories
The ways in which IHDP’s approach and activities contributed to improved outcomes and impact are shown through impact stories.