Making Data Available for Research
SAIL and NWORTH Agree Strategic Collaboration
SAIL (Secure Anonymised Information Linkage) and NWORTH (The Bangor Clinical Trials Unit, part of the University’s School of Healthcare Sciences) have agreed to work together in a collaborative partnership. SAIL is a Wales-wide research resource focused on improving health, well-being and services. Its databank of anonymised data about the population of Wales is world recognised. Both SAIL and NWORTH receive core funding from the Health and Care Research Wales (formerly known as Welsh Government’s National Institute of Social Care and Health Research). A range of anonymised, person-based datasets are held in SAIL, and, subject to safeguards and approvals, these can be anonymously linked together to address important research questions.
Both SAIL and NWORTH have an interest in increasing the quantity and quality of health related research which takes place within Wales, and both organisations recognise the significant contribution made by the other to advancing the research agenda. North Wales has a number of characteristics which make it an ideal region for conducting clinical trials and other health research. There are currently a number of national and regional initiatives which are working to increase the level of research activity in North Wales, within both the public and private sectors. SAIL has significant potential to add value to a variety of health research projects from clinical trials to epidemiological studies.
A strategic partner located within North Wales who could act as a local point of contact for research groups would be helpful in encouraging the North Wales research community to work with SAIL. NWORTH has an established team of health research specialists, with expertise in study design, trial and project management and data analysis, and so would be an appropriate partner to provide this local point of contact with SAIL.
This collaboration represents exciting opportunities for health researchers in North Wales in many circumstances requiring health and social care data. All projects resulting from this collaboration will be governed by individual contracts that will determine Intellectual Property and Information Governance on a case by case basis.
Principles for collaboration
Both organisations have agreed to work together in the following ways:
- Exploring opportunities for joint research projects and undertaking these in partnership where possible.
- Increasing research activities within the North Wales region through working with SAIL.
- Encouraging North Wales NHS organisations (e.g. the Health Board and GP practices) to engage with SAIL and provide data to its databank for conducting health-related research that benefits the NHS in North Wales.
- Exploring ways for NWORTH team members to work more closely with SAIL and establishing joint student placements via the Swansea University Medical School’s Health Informatics or Health Data Science postgraduate taught or research courses or other suitable professional development courses.
- Promoting each other’s events and campaigns by attendance, giving presentations, disseminating material and other activities as appropriate which highlight the collaborative links that exist between the two organisations.
- NWORTH acting as a focal point for SAIL amongst North Wales based researchers, and providing locally based support and advice as required to researchers interested in working with SAIL.
The collaboration enhances NWORTHs Health Data Platform project which, seeks to make routinely collected health related data available to researchers in a controlled and secure manner. For further information contact Kevin Mawdesley at: firstname.lastname@example.org, 01248 388222 (x8222) or visit our website via the following link: http://nworth-ctu.bangor.ac.uk/nworth-collaboration
Publication date: 13 November 2015