A Health and Biomedical Informatics Research Strategy for Scotland

Executive Summary and Recommendations

Scotland is fortunate to have some of the best health service data in the world. Few other countries have systems that combine high quality data, consistency, and national coverage with the ability to link data to allow patient-based analysis and follow up. Scotland has a long tradition of using linked health service data for research and methods have recently been developed for combining health service datasets with other data sources such as the Census and population surveys. Data linkage is a highly efficient way to evaluate the capacity of interventions to deliver patient benefit. It allows us to measure long term outcomes in clinical trials, assess the safety of new medical interventions and to understand patterns of health and illness across the whole population. It is a key contributor to our aim, set out in the NHS Scotland Quality Strategy^[1] of providing the highest quality of healthcare services to people in Scotland and through this, to be counted among the best in the world.

However, we cannot afford to remain complacent. The pace of scientific discovery has quickened, including:

• a revolution in genomics
• advances in information technology
• increasing complexity of the molecular understanding and treatment of disease
• the need to integrate services across health and social care

In addition, citizens' expectations, of both efficiency and effectiveness in health research and in the way data are handled, are continually evolving. In consequence there is a need to review our collective approach to health informatics research, in order to ensure that it is fit for purpose. Any recommendations for change must be in harmony with our enduring commitment to the highest standards of information governance and active public participation.

In December 2012, the eHealth Strategy Board of the Scottish Government, in collaboration with the Chief Scientist Office, convened a group under the leadership of Sir Lewis Ritchie to consider how Scotland should respond to the opportunities and challenges in health informatics research. This strategy reflects that group's findings. It aims to build upon Scotland's widely-recognised strengths in health informatics research and to ensure we continue to set an international standard for the secure use of routinely collected patient data for research. The strategy is aligned with the Data Vision for Scotland which sets out an objective to champion and unleash across Scotland trustworthy uses of data for public benefit^[2]. The strategy also seeks to align the investment by the Medical Research Council and others in a UK wide Institute for Health Informatics Research, with existing infrastructure to enhance Scottish capability in health informatics research for patient, public and economic benefit. This is primarily a research strategy, but we recognise that optimum use of high quality data is a cornerstone of the best health systems, and that our proposals can help to drive service improvement as well as research productivity.

We conclude that to realise this vision, we need strong working relationships between the emerging and existing infrastructure. Researchers must have better access to high quality sources of data and be able to work in settings where they can share expertise and new ideas. This in turn requires information governance to be proportionate and the processes of approval and assurance streamlined. Data controllers need to be assured that the new arrangements are secure. The NHS and Industry partners must be engaged to accelerate the translation and impact of health informatics research. Throughout, public confidence and trust need to be maintained through a two-way dialogue about uses of data.

We identify six key areas for action:

1. Embedding the Farr Institute Scotland within a federal network of safe havens to create a national focus for innovation

2. Clear points of access to the new data linkage infrastructure for researchers in the NHS, Universities and, working in partnership with academic researchers and the NHS, industry

3. Proportionate and efficient governance, with close monitoring of performance

4. Improved quality and accessibility of clinical, laboratory, imaging, molecular and primary care datasets for research

5. Engagement with patients, the public and industry, demonstrating how the benefits of health informatics research can be shared, and:

6. Developing capacity in health informatics research expertise in Universities and the NHS.

We propose that these actions would be achieved within the 5 year span of this strategy. Furthermore, we suggest that the progress of the strategy be reviewed within 3 years.

Our specific recommendations are to:

Recommendation 1: Establish a Charter to set out the principles, and address at a high level the practical, technical and governance challenges that need to be overcome to establish a strong and efficient federal network of safe havens, and to provide a basis for the development of an accreditation framework for NHS safe havens in Scotland. Future funding of NHS partners including National Services Scotland (NSS) and the NHS Research Scotland (NRS) nodal safe havens in Aberdeen, Dundee, Edinburgh and Glasgow should be conditional on their agreement to the Charter, and ability to fulfil the standards it specifies. Safe havens may be established within NHS Boards other than the NRS nodes, or to support specific projects, and consideration should be given to whether they should also be able to join the network.

Recommendation 2: Remove duplication in the research governance process, and improve the speed and consistency of decision-making. This should be facilitated by the Safe Haven and accreditation framework. The success of any new structures in terms of streamlining decision-making should be closely monitored and national benchmarks and performance metrics established; further changes should be implemented if necessary to bring performance into line with other approvals processes.

Recommendation 3: Improve the provisioning of national primary care, prescribing and clinical datasets for research and in support of NHS healthcare activity by ensuring that provision for both system query and data extraction is built into the specification of new systems. At the same time, this should promote more efficient integration of data across NHS Boards through specification of common data standards, and/or initiatives to map local data standards to consistent data definitions.

Recommendation 4: The Farr Institute Scotland, the Safe Haven Network, the Chief Scientist Office and eHealth Strategy Board should consider the ways in which health informatics research capability can generate economic benefit, and work with partners in industry to develop early exemplars of the benefits of engagement for both economic, health and social benefit.

Recommendation 5: The eHealth Strategy Board should work with the Scottish Informatics and Linkage Collaboration and Data Management Board to develop a programme of public engagement activities to widen understanding of how data is used in research to improve population health and the quality and effectiveness of healthcare.

Recommendation 6: Research funders and the NHS should be encouraged to prioritise investment in health informatics research expertise through doctoral and postdoctoral training schemes, and by increasing the capacity of the NHS to use patient data to inform service improvement.