Digital Economy Bill

Written evidence submitted by Ms Vanessa Cuthill (in a personal capacity) (DEB 41)

Digital Economy Bill

Background

1. This written submission is focused on Part 5 – Digital Government, Chapter 5 – Sharing for Research Purposes of the Digital Economy Bill. For the previous five years I have worked in a role within the Economic and Social Research Council (ESRC) and now work within the university sector at the University of Essex (so this is not a submission on behalf of any employer), and these roles have enabled me to develop in-depth knowledge about the data policy environment and the barriers that academic researchers face when they are seeking to undertake evidence-based, policy relevant research. I have worked with academic researchers, statisticians, funders, and government departments to identify key barriers and inform the legislative proposals. I have also been a participant in the Cabinet Office led Open Policy Making (OPM) process and advised the Cabinet Office at key stages in the development of the ‘research proposals’ within this Bill.

2. This breadth of experience over recent years has provided me with a valuable perspective and knowledge relevant to this Bill and its proposals. UK research is globally leading and existing data legislation limits high quality, timely, policy relevant research that re-uses government held administrative data. Through this written submission I wish to express my support for the Research Purposes Chapter (5) of the Digital Economy Bill, whilst highlighting some issues and opportunities for improvements to its current draft.

Summary of key points:

3. Evidence and use of data should be at the centre of all government policy making and, working with the academic research community, the UK has the potential to be world leading in its use of administrative data to this end (http://www.esrc.ac.uk/research/our-research/administrative-data-research-network/administrative-data-taskforce-adt/). There is a risk that without new data sharing legislation the UK will fall behind other countries in its use of data and ability to provide timely and reliable evidence to inform policy. The UK’s largest funder of social and economic research, the ESRC, has led the way in investigating the barriers facing researchers when seeking to use government administrative data for policy relevant, high quality research that is in the public interest. The background report informing this work was published in 2012 (available at http://www.esrc.ac.uk/research/our-research/administrative-data-research-network/administrative-data-taskforce-adt/) and has been a cornerstone of investment and discussions in recent years. It found that one of the key issues delaying decision making in government when asked to share such data has been the myriad of legislative gateways established by departments over the years with good intension but that now act as restrictive barriers rather than enabling routes to sharing. This Bill proposes legislative changes that will clarify how such data can be shared safely for appropriate purpose and so taking away uncertainties in current practices.

4. There are existing, well established underlying principles that the Code of Practice proposed in this Chapter of this Bill will build upon. The Scottish Data Guiding Principles ( http://www.gov.scot/Topics/Statistics/datalinkageframework/GuidingPrinciples ) were developed to ensure that statistical and administrative data can be securely and efficiently linked for research and statistical purposes in the public interest. They support the legal, ethical and efficient use of data for linkage purposes within a controlled and secure environment. These Principles are enshrined within the ADRN ( www.adrn.ac.uk ) which was established in 2011 to enable more use of government data in bona fide social and economic research, with safety measures in place to protect sensitive data. The ADRN requires ‘5 safe’s ’ of data sharing: people, projects, environments, data and results’ with the scrutiny of an independent approval panel and an overseeing and independent Board. It operates with agreed policies for breaches, penalt ies and retention of data, all informed by international best practice. This model and the relationship with the Scottish Data Principles will be informing the Code of Practice to be drafted and consulted upon by the UK Statistics Authority (Pt 5, Ch5, Section 60). The Information Commissioner’s Office has provided guidance both on Anonymisation but also on Data sharing – which is helpful to all agencies seeking to provide access to such administrative data.

5. This stated, in this submission I wish to draw to the attention of the Committee five key issues regarding Part 5, Chapter 5 (Digital Government, Sharing for Research Purposes) of the Bill:

i) Data sharing for research is valuable and sharing is already happening across government and to a lesser degree with the academic research community. Proposals in Pt 5, Ch 5 clarify how such data can be shared safely for appropriate purpose and so taking away uncertainties in current practices.

ii) The exclusion of health and adult social care data from the proposals (Pt5, Ch5, Section 62 Clauses 2-4) is un-necessary and limits interdisciplinary research.

iii) The UK Statistics Authority (Statistics Board) should be given authority over all sharing of administrative data between government departments, not just data sharing with academic researchers, and this will ensure consistently robust and transparent process.

iv) Government departments that refuse requests to share the data should be held to account and a relevant authority or individual should be given the power and authority through this Bill to require data is shared if it is legal and safe to do so.

v) If cost recovery for the work undertaken is to be permitted to be charged by departments (pt5, Ch5, Section 57, Clauses 4 and 6) this permission should not be included on the face of the Bill but be within the Code of Practice. Charges must be transparent to all researchers ahead of time and controlled by the Statistics Board.

Further explanation of these key issues

6. Firstly it is important to recognise that data sharing for research is already happening across government and to a lesser degree with the academic research community. As highlighted in paragraph 14 below there are many public interest research projects that require access to administrative data, some of which are underway but many of which are being delayed or may not progress. The proposals broadly presented in Chapter 5 – Sharing for Research Purposes should be supported as they provide a structure and transparency to existing practice and remove uncertainty and potential barriers to sharing with academic researchers that government lawyers have struggled with. It would reduce time for approved access to data extracts, reduce legal costs of understanding if access is to be permitted under law, and enable more high quality research to proceed in a timely fashion which supports the ambition of better evidence for policy making.

7. However, the proposals in the Bill do not address a number of other keys issues in a way that would make this opportunity for change most effective and impactful. The exclusion of health and social care data from the research clauses (Part 5, Chapter 5, Section 62 Clauses 2-4), yet not from other Chapters, creates a significant barrier for researchers. Many of the key questions and challenges facing society are not delimited by disciplinary, departmental or even legislative siloes. Recent reports on social mobility, discussions about our education systems, the challenges facing our ageing society require a joined up and interdisciplinary research design. Whilst acknowledging the public sensitivity surrounding sharing health data, the proposals for accredited and approved access to social and economic data for researchers are robust and the HSCIC (NHS Digital) should look at track records within the academic research community for evidence of how securely data is handled and be assured that health and social care data will be safe. So, secondly the proposals do not enable interdisciplinary research to access the breadth of data as they exclude health and social care data. This should be reconsidered.

8. The proposals make the case for an overarching authority to approve and accredit research, researchers, and facilities, and that this may be performed by the UK Statistics Authority (Statistics Board). The functions and responsibilities of the Statistics Board are set out in Pt 5, Ch5, Section 60 and 61 and these proposals are to be welcomed and resources should be made available to ensure that the Statistics Board can fulfill its functions. However its role and remit stops short of an ideal position, limiting the Board to focus on the accreditation of researchers and the processes to handle the data rather than having remit over data sharing between government departments and having an authoritative role over non-compliance by government departments. As highlighted above, data sharing is happening between government departments with less oversight than when data is passed to approved researchers. Therefore, thirdly, the Board should be given authority over all sharing of administrative data between and from government departments – ensuring a robust process no matter who is requesting the data, and that transparency is enshrined through the adoption of these approval processes enabling the public not just to know which academic researchers are using the data for what purpose, but also which departments are using the data.

9. Following on from the above point, it is also essential that there is some authority vested in, for example, the National Statistician, the Information Commissioner, or a Minster, to ensure departments are responding in an appropriate and timely manner to requests by researchers, and that thus authority can hold a department to account if it continues to refuse to share data despite the legislation and all the processes and safe guards being in place. Part 5, Section 60, clause 2 only requires a public authority to have regard to the Code of Practice but there are no requirements for a public authority to be responsive to researcher requests. The Bill continues to allow for departments to decide not to share, possibly due to cultural barriers and fear that the resulting research could be embarrassing and expose policy concerns, so, as currently drafted, this cultural barrier will not be addressed. Therefore, fourthly government departments that refuse requests to share the data should be held to account and challenged by a relevant authority or individual, and the proposals in the Bill require some revision to address this.

10. Finally the proposals allow departments to charge a researcher for the costs of the work done in response to the request for data (Pt5, Ch5, section 57, clauses 4 and 6). This is a cost recovery approach and whilst recognising that departments have limited resources, such costs should be limited as departments should already be responsible for proper curation and management of their administrative data. This proposal does leave open to interpretation how much can be claimed from researchers as there is no financial cap proposed or requirement for a transparent pricing structure. For a researcher working within an academic or other approved environment any such charge for data creates barriers to undertaking research and two-tiered access depending on the funding source for the research. It gives rise to concern that the data is already a public resource and should not be treated as a commodity, and as in many cases the funder will be the ESRC this cost recovery approach to providing data could be seen as recycling public money (from a research council funded by one government department into another government department). Furthermore it will drive up the direct costs of research and as it will be administratively burdensome there will be hidden indirect costs. Therefore my fifth point is that there should not be an expectation that costs are recovered by departments providing this data to researchers, and if this is acceptable it should not be enshrined on the face of a Bill but written as optional within the Code of Practice and with requirements for transparency of pricing and service level agreements, all within the control of the Statistics Board.

Concluding remarks

11. Despite highlighting some areas for amending proposals to the Bill, this is a rare opportunity to address barriers facing the research community who seek to use such data for public good research. The safeguards proposed in the Bill have been largely tested by the ESRC funded Administrative Data Research Network (ADRN) over the last couple of years. As I state in my recently ESRC Blog (https://blog.esrc.ac.uk/2016/09/26/dreaming-about-legislative-change-an-opportunity-for-data-driven-research-that-must-be-seized/) the evidence looking at public attitudes to data sharing do not support the premise that the public would not support data sharing with researchers for projects in the public interest. As this is an area of concern often cited but without sufficient evidence, I would suggest further work to explore public acceptability of aspects of these proposal be commissioned to run in parallel.

12. Furthermore it is important to highlight that the research and the statistics proposals are not intended to ‘identify’ individuals, rather to understand population groups and trends. Other Parts and Chapters of this Bill set out to find and identify individuals and households, and for this reason there has been some unease about the composition of this Bill.

13. The UK Statistics Authority has attended the Open Policy Making process and the conclusions of this OPM process have been noted by the UK Statistics Authority. I understand that the safeguard and expert guidance highlighted above have informed the Code of Practice for Research Uses that is in draft and that the proposals are not expected to result in ‘bulk’ transfer of administrative data but extracts being shared and linked in accredited and restricted access facilities. Also, throughout the OPM process and afterwards, the development of the EU General Data Protection Regulation have been discussed and considered. There are research exemptions that have been agreed, and understand that the ICO is considering how these are reflected in domestic legislation. The Wellcome Trust has led a successful engagement on behalf of the research community and continues to engage. Scrutiny by such organisations will ensure that this proposed legislation is not in contradiction to the EU Data Protection Regulation and I believe that the UK Statistics Authority is monitoring this as well.

14. Finally, research using administrative data is extremely important and valuable in informing policy decisions. Examples of research already being proposed can be found in a list of 44 projects approved by the ADRN (https://www.adrn.ac.uk/research-projects/approved-projects/) which include projects using data to investigate: mental health and social care needs; adult participation in sports; the impact of disability on employment; risk factors for domestic violence and child sexual exploitation; and sociodemographic characteristics, educational attainment and self-reported health status. Such projects have clear public value, however under current legislation are not progressing without significant delay. The legislative proposals in this Bill are not expected to resolve all the barriers to enabling such projects to progress, however they will remove a central barrier and so should be supported.

October 2016

 

Prepared 18th October 2016