METADAC

Some of the most important advances in our understanding of health and society are based on research studies that have been collecting information (or data) from ordinary people over many years. These studies are called longitudinal studies. The UK has a unique history of supporting longitudinal studies, with some starting as long ago as the 1930s. Longitudinal studies collect data about how people live, their health, well-being, education, as well as their social and physical environments. Some also collect biological samples (e.g. blood or urine) which can be processed to obtain data about inherited characteristics (genetics). For example, these studies have shown us that smoking in pregnancy leads to poorer health in babies and that inherited characteristics can affect health conditions such as diabetes and high blood pressure.

Researchers from the UK and around the world can use these data and samples from longitudinal studies to answer important questions about human health and wellbeing. Some of these data collections contain information that is sensitive, especially when different types of data or samples are combined. For this reason access to the data and samples for research is restricted. Only qualified researchers working for recognised research institutions can use these data or samples. Independent committees exist to safeguard the people who contributed the data. The METADAC project runs such an independent committee to approve applications from researchers to access data and samples from UK longitudinal studies. METADAC designs the rules for making sure that access to data and samples for research is safe and secure based on the best practice and policies from around the world. METADAC also ensures that the process of applying for access is fair and transparent. METADAC includes experts in science, ethics, law and clinical practice who have an understanding of the complexities of sharing data and samples for research. METADAC also includes people who provide data and samples for longitudinal studies (the study participants) in developing rules about access and in granting permission for researchers to access data and samples.

METADAC has already successfully completed three years of development - 2015 to 2018. In its second phase (2018 to 2020) METADAC will continue to provide safe and fair access for research which combines different types of data and uses samples. METADAC will strengthen and promote its systems so that more researchers can use data and samples from longitudinal studies to advance knowledge about health and society. As part of its commitment to safe use of data and samples, METADAC will also work closely with other organisations who are charged with keeping the data and samples from UK longitudinal studies safe and secure.

Impact Summary
At present, there is strong strategic investment in ensuring not only the optimisation of research data use, but also of routine data generated by health and social care services and other administrative data services. The international research community is proactively working towards creating a world in which all such sources of data can, where beneficial, be integrated, linked and jointly interpreted; this potential has been demonstrated in the UK in projects such as The Farr Institute, the Administrative Data research Network, Connected Health Cities, the pan-London Health Information Exchange, and Medical Research Council's Health Data Research UK initiative. The aims of such initiatives and the enhanced data utility they provide are three-fold: (1) to better use data to directly inform front-line clinical care and public health; (2) to enhance the evidence base for health and social care planning and strategic development and formally evaluate key initiatives in these domains; and (3) to enhance the quality and scope of research in health science, bioscience and the social sciences.

In this context there are many beneficiaries of the data and samples made available through the METADAC:

Who will benefit from this funding and how?

Bio- and social science academics who access data and samples through application to METADAC are immediate beneficiaries of this funding. An audit (February 2018) of the disciplines making use of the resource include: Biosocial studies, Biostatistics, Chemistry, Clinical epidemiology, Clinical Science, Communication Studies, Computing, Econometrics, Economics, Education, Employment and work studies, Environmental Studies, Epidemiology, Epigenetics, Genetics, Health Sciences, Immunology, Informatics, Law, Linguistics, Management/Business, medical genetics, Molecular Biology, molecular genetics, Neuroscience, Nutrition, Omics research, Oncology, Paediatrics, Pharmacy, Political science, Psychiatry, Psychology, Public health, Social Science, Social work, Sociology.

Academics working in the field of Ethical, Legal and Social Implications (ELSI) research benefit from interaction with, contribution to and learning from governance developments undertaken in METADAC, either directly as members of the committee or as part of the international community of scholars of which Prof Murtagh is a part. As Co-lead of the Regulatory and Ethics Working Group of the Global Alliance for Genomics and Health, member of the ELSI 2.0 Steering Committee, member of the International Association of Bioethics, International Sociological Association Prof Murtagh promotes use and understanding of the METADAC. Likewise Prof Burton, Blell and members of the METADAC committee promote METADAC through their networks.

Longitudinal studies, whose data and sample applications are managed by METADAC, benefit directly by having access to an independent governance infrastructure which administer, develops and undertakes data and sample access management and policy. There is a major benefit in ensuring that those leading longitudinal studies can concentrate primarily on the science and technology that relates to that rather than the work associated with governing access to the data and samples produced by those studies leaving this instead to an independent interdisciplinary group of specialists who can pull together all of the requisite knowledge and understanding to address governance in this rapidly evolving field and respond to new challenges as they arise.

That longitudinal studies benefit through the mutual learning from other studies has been demonstrated in the pilot. With outreach to other longitudinal studies and the user community this shared and collaborative learning will grow.

Citizens benefit from the outcomes and impact of the research conducted on the basis of applications for data and samples to METADAC.