The following is an excerpt of SDRC Impact Report 2019 which provides on overview of the research in the field of brain health Informatics, through the Scottish Dementia Informatics Partnership. Blogs on the other SDRC themes will be available in the coming days.
The Scottish Dementia Informatics Partnership (SDIP) is a project that makes use of a wealth of data that have the potential to address fundamental questions about the healthcare of people living with dementia and at a high risk of developing this condition.
There are currently 28 researchers and 6 PhD students working within the SDIP research theme across Scotland. Collectively they have secured over £800,000 in grant funding and 20 publications in the past five years. It should be highlighted that many of those classified as working in other themes are contributing to this important area of research.
SDIP is a national project and will link data on the Scottish population. Our current research and strategy has been focused on NHS Lothian, so that we can apply a relatively small-scale, proof of concept of SDIP to identify experiences, barriers and challenges that can help inform the national rollout.
The foundation dataset for SDIP will be represented by the Scottish Brain Health Register (SBHR). This is a research interest register that connects people to dementia and brain health research and is situated as part of a memory clinic service in NHS Lothian, meaning that all patients under the service’s care receive the opportunity to take part in research and to be kept informed on what research is being done.
By signing up to the register, people have the opportunity for their demographic and medical details to be collected and recorded into the register, so that they may anonymously be reviewed and analysed as part of SDIP. Furthermore, if that person takes part in a study, data generated about them through that study would also be recorded into the register.
Our future work is dedicated to national rollout, informed by our experiences and findings of our work in NHS Lothian. The SDIP strategy is to introduce SBHR to NHS Grampian, Tayside and Greater Glasgow and Clyde throughout 2019. In this way, the foundation dataset will reach to and represent the largest hospital sites and boards across Scotland. Best practice manuals and implementation strategies are being built on the basis of evaluation work completed to date and working with key memory impairment clinicians at the three sites to ensure lessons learnt from the pilot site are incorporated into the next phase.
SDIP also works closely with a number of stakeholders and a key focus for the coming months is gathering input on use cases from each group. The stakeholders of focus are patients and the public, and industry. We will be working with the Scottish Dementia Working Group and the National Dementia Carers Action Network to understand their views on research opportunities, preferred communication methods and timing of introductions to research in diagnostic journeys. We will also be developing end user beneficiary reports to demonstrate the potential benefits anonymous data access may have for industry partners.