Digital Economy Bill

Written evidence submitted by the Economic and Social Research Council (ESRC) with input from the Medical Research Council (MRC) (DEB 59)

Background

1. The Economic and Social Research Council (ESRC) with input from the Medical Research Council would like to submit a response to the Digital Economy Bill with a focus on data sharing for research and statistical purposes (Chapters 5,6, and 7) .

2. Research Councils have made significant investments in data infrastructure to exploit the richness of data collected by government departments, businesses and other organisations, to advance scientific knowledge for the benefit of the public and its government in the UK. More information about each of the Research Councils, our relevant investments including the Administrative Data Research Network (ADRN), and links to research of social value that relies on access to administrative data can be found in Appendix A.

Summary

3. Overall, we are supportive of and welcome new legislation that will streamline a complex legislative landscape and will enable better access to administrative data for research purposes. This legislation will enable our safe data infrastructures, such as the ADRN, to exploit the wealth of administrative data for research that generates wider socio-economic benefits.

4. We welcome Chapter 5 of the Bill which seeks to set out the conditions for the safe sharing of information. It is important that there is consistency across government departments regarding the implementation of these safeguards and that these are proportionate towards safeguarding data and privacy whilst enabling high quality and socially beneficial research.

5. We further welcome the important role of the UK Statistics Authority and its Board, which runs the ADRN Board and with whom the ESRC has a strong partnership. We are therefore reassured that the interests of our research communities, and through their work the interests of the wider public, will be well served by the role of the UK Statistics Authority to provide a code of practice, ensure transparency and regulate the process of data sharing within government.

6. We also support Chapter 6, which will enable the HMRC to share, in a safe and trusted way, data for research purposes, implementing similar safeguards to those of other government departments. Data sharing for research purposes can further benefit from clauses under Chapter 7 for the disclosure of information for statistical purposes to the UK Statistics Board. We therefore welcome legislation to enable the ONS to receive important data for statistical purposes and build statistical products of use to our research communities and which ultimately benefit the wider public.

7. However, we recommend that the legislation can be improved if the Bill:

a. Provides more details around the Code of Practice, including its key underlying principles, to reassure the public;

b. Does not exclude health and social care data or other data (e.g. private sector data) to increase the benefits of the research;

c. Gives more powers to institutions identified in the Bill (i.e., the UK Statistics Board, the ONS) to request data, if legal and safe to share, from government departments for research and statistics purposes in order to tackle cultural barriers to sharing; and

d. Introduces more transparency and accountability regarding the cost-recovery model, which should be included within the Code of Practice, rather than the Bill.

Explanations

8. The Administrative Data Taskforce (ADT) report, published in 2012, identified the vast opportunities that UK’s administrative data can provide for research and policy: "Routinely collected administrative data are a rich and largely untapped source of information for research and policy evaluation in the UK, the value of which continues to appreciate over time. Such data are often high quality, nationally comprehensive, provide information for long periods of people’s lives, and are relatively inexpensive to exploit, compared to the costs of establishing specially commissioned surveys." (ADT report, 2012; p.ii).

9. The report acknowledged that despite the wealth of data generated by its public sector businesses, the UK is lagging behind other countries (e.g. Scandinavian countries) that have made use of their population registration statistics and other administrative data to facilitate important research in an efficient manner. The complexity of the legislative landscape in the UK was identified as a key constrain to data sharing and one key recommendation was that primary legislation was needed to enable efficient access to, and linkage between, administrative data held by different government departments, agencies and other statutory bodies, for research and statistical purposes.

10. The ESRC, which led on the ADT, implemented all of the recommendations of the report and invested £38.5 million to fund the Administrative Data Research Network (see Appendix A). ADRN was funded and was set up in the absence of this generic legislation but for the last three years, ESRC have been supporting the Cabinet Office’s work and the open policy making process it led which resulted in shaping much of the legislative clauses under Chapter 5.

11. The use of linked administrative data for research has wider socio-economic benefits and new legislation can ensure that these are realised. In July 2013, Deloitte’s report to the ESRC, which formed the basis for our Business Case for the ADRN, demonstrated the wider benefits of the ADRN. These included wider economic impacts in the form of reduced transaction costs of accessing data and better policymaking/ efficiency savings arising from better use of the data – this could, indicatively, be in the order of £70m-£95m over five years. The report further argued that the wider social and economic impacts of the investment could include better health outcomes, improved economic growth, and the development of new skills in big data analysis, among others.

12. However, Deloitte’s report concluded that the extent of these benefits could increase if new legislation is passed to further improve access and clarify the legal powers of public sector bodies to share data. The legislative environment is therefore important to ensure that carefully set up safe infrastructures funded by taxpayers’ money to generate knowledge and benefit society, such as the ADRN, can generate the benefits for which they were set up.

13. Prior to setting up the ADRN, ESRC commissioned a series of dialogues with the public to explore views on using administrative data for research purposes. A key finding of this exercise was that the public would support the use of administrative data for research if safeguards were in place to protect privacy and there was transparency. The ADRN went on to implement these safeguards, which can also be found on its website: https://adrn.ac.uk/share-your-data/security-standards/. In brief, the ADRN operates according to the principles of the "5 Safes of Data Sharing": safe people, safe projects, safe environments, safe data and safe results. The ADRN builds on existing international and national principles. Its experience illustrates that the current Bill can build on existing principles and that key underlying principles for safeguarding data should be included in the Bill to reassure the public and gain their confidence.

14. Health data are no different to other types of administrative data in that they too derive from the delivery of public services. The experience of care.data has highlighted public sensitivities around the sharing of health and social care data and the importance of maintaining an open public dialogue. For research and statistics purposes, however, where the focus is on de-identified data and on patterns or trends rather than individuals, safe and legal access to health data can be highly beneficial to improve public services.

15. Many of the UK’s health challenges, from obesity and diabetes to dementia and mental health, are influenced by a complex array of environmental, social, political and economic factors. It is important for the medical and social science research communities that the current legislation enables the flexibility to accommodate linkages between health and other administrative data to inform and develop sustainable health and care services. The need to link health with social and economic data to address major health challenges in the UK, including inequalities in health outcomes, is further highlighted in a recent report by the Academy of Medical Sciences. http://www.acmedsci.ac.uk/policy/policy-projects/health-of-the-public-in-2040/

16. Although the inclusion of HMRC data was not discussed extensively during the open policy making process led by the Cabinet Office (Chapter 6), for our research communities legislation to enable HMRC to share data beyond tax purposes and for purposes that are of direct benefit to their functions, would be very beneficial. In the past, research that has linked HMRC data with other administrative data has resulted in evaluating policies to prevent re-offending and to help offenders and former prisoners into work (e.g. https://adrn.ac.uk/research-projects/case-studies/prison/)

17. The introduction of a cost recovery model may help to ease resource related constraints to data sharing across government but it is important that fees are capped and remain modest; are subject to transparency in their calculation and imposition, including accessible interdepartmental tariffs subject to external scrutiny; and subject to the UK Statistics Authority taking a strong role to ensure that the cost recovery model is implemented in a fair, accountable and transparent manner.

18. The Committee should also take into account that for a researcher working within an academic or similar research environment, data charges can constrain their ability to undertake research whilst for public-sector funders of research such as the Research Councils, this can be perceived as "recycling public funds". So if cost recovery for the work undertaken is to be permitted to be charged by departments, 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.

19. Finally, Chapters 5, 6 and 7 allow rather than require government departments to share data. If government departments decide to not share their data, there should be transparency and accountability regarding how decisions are being made and how departments could be held accountable. The Bill will need to address this very important point if current legislation is to be effective towards creating efficiencies in data sharing and combating cultural barriers.

October 2016

Appendix A

1. The Economic and Social Research Council (ESRC) is the UK's largest funder of research on economic and social issues. We support independent, high quality research which has an impact on business, the public sector and the third sector and we have been at the forefront of developing the UK’s social science data infrastructure for the last 40 years. http://www.esrc.ac.uk/

2. The Medical Research Council (MRC) seeks to improve human health and support economic growth through supporting the delivery of world class medical research. http://www.mrc.ac.uk/

3. In October 2013, the ESRC invested £38.5 million in four Administrative Data Research Centres, one in each country, and an Administrative Data Service to these to enable safe access to linked and de-identified data for social and economic research of societal benefit. These make up the Administrative Data Research Network (ADRN) which is a UK-wide partnership between universities, government departments and agencies, national statistics authorities, the third sector, funders and researchers. The ESRC funded the Network following the recommendations of the Administrative Data Taskforce Report of 2012 ‘Improving Access for Research and Policy’. As the "Digital Economy Bill Factsheet – Digital Government: Research and Statistics" states, the Report also recommended legislation to streamline the complex legislative landscape of administrative data sharing. The ADRN reports via the ESRC to the Department of Business, Energy & Industrial Strategy (BEIS) and via the UK Statistics Board to the UK Parliaments. Access to administrative data is pivotal for the ADRN in order to undertake its research projects on key areas of social policy.

4. For a list of all approved ADRN projects, please see here: https://adrn.ac.uk/research-projects/approved-projects/. For a list of case studies that illustrate how linking government data for research purposes can improve public services and make society better, please see here: https://adrn.ac.uk/research-projects/case-studies/

5. In the past three years, the MRC has invested over £100 million supporting research, infrastructure and building capacity in interrogating, analysing and linking large and complex health and social data. This includes the establishment of the Farr Institute of Health Informatics Research, a UK-wide research collaboration involving 21 academic institutions and health partners in England, Scotland and Wales. The Farr Institute is committed to delivering high-quality, cutting-edge research using ‘big data’ to advance the health and care of patients and the public.

6. The ESRC together with the MRC have committed over many decades to fund longitudinal studies including the Centre for Longitudinal Studies cohorts. Such data, collected with consent from participants, has the potential to be further enriched through linkage with administrative data.

 

Prepared 20th October 2016