Data Sharing Consultation Event Vanessa Cuthill

Why is ESRC concerned? Administrative data has significant value for research but is not designed or collected with research purposes in mind Benefits of using administrative data more comprehensive coverage of the population minimal respondent burden supports up-to-date policy relevant research track changes over time, and uncover trends which demand action at an early stage; data exists so no extra cost of collection making it a more cost efficient way for doing research and analysis. Barriers to its use faced by our social science research community include: lack of transparency about datasets and their quality inconsistent access conditions time delays and lack of transparency around decision making resource constraints complex and unclear legal framework

What has the ESRC done so far? In 2012 we led the Administrative Data Taskforce which recommended that: “ legislation should be sought to provide a generic legal gateway for research and statistical purposes that enables efficient access to, and linkage between, administrative data held by different government departments, agencies and other statutory bodies” Since then ESRC has: Invested over £40M in new data infrastructure (ADRN) Established a funding scheme - Secondary Data Analysis Initiative (SDAI) Undertaken a dialogue on data to understand public views Offered a research community perspective to the Cabinet Office to inform the development of legislative proposals

In summary, what are the proposals? ‘Permissive’ legislation provides additional legal gateways for public data to be shared The data to be shared with the researcher will be ‘de-identified’ Proposes a Trusted Third Party Model, or approved hybrid model, which allows for an indexer and access facility functions so long as specified safeguards are in place UK Statistics Authority to have a role as accreditor of persons, indexers, facilities and research, and must publish and maintain registers

Questions posed by the consultation Should fees be charged…and should there be a maximum fee monitored by the UK Statistics Authority? The draft clause (2(6)) states that a fee can be charged by the public authority which might also be the accredited indexer or the accredited access facility. If there is a charge then there should be a maximum fee cap and transparent costing framework

Questions posed by the consultation Should details of rejected applications and the reasons for rejection be published? Principle of transparency Several reasons for rejection – not all to do with the researcher or research Level of detail provided needs careful consideration – metrics may be more valuable than names

Questions posed by the consultation What principles / criteria should be used to identify research with the potential for public benefit (good)? The consultation suggests public benefits means: “Informing the public about social and economic matters” “Assisting in the development and evaluation of public policy” Must allow for speculative research that has the potential to improve knowledge and society in the future Careful to avoid ‘lock in’ and ‘conflict’ with other legislation such as NHS Act 2006 section

What do the proposals leave unclear? The relationship with health bodies data – health and social care is not included in these proposals The benefit to those seeking to link consented survey data with administrative data ‘Permissive’ so nothing to compel the data share – will it change culture? Whether the new criminal penalties (or fees) will deter data sharing? The relationship with private sector data and users? How does this relate to the anticipated new European Data Protection Regulation? How do all strands fit to a coherent Bill?

Final thoughts… There are tangible benefits and opportunities for research, policy and society from improving the use of a rich and largely untapped source of information for research and policy evaluation in the UK. Legislative change is vital to allow what is technically feasible to be undertaken in a more consistent and efficient legislative environment. ESRC contacts: Vanessa.Cuthill@esrc.ac.uk Maria.Sigala@esrc.ac.uk