Expert Advisory Group on Data Access
The Expert Advisory Group on Data Access (EAGDA) was set up in 2012 and ran to 2017.
It promoted good working practices, consistent governance and transparent decision making for managing and using data from cohort studies.
What was EAGDA?
EAGDA was a partnership between:
It was funded equally between the four partners and Wellcome provided the secretariat.
13 members [PDF 102KB] with expertise spanning genetics, epidemiology, social sciences, statistics, IT, data management and security, law, and ethics.
Professor James Banks was Chair from October 2015 to October 2017. Professor Martin Bobrow was Chair from June 2012 to October 2015.
A future model for funder advice
There have been rapid and significant changes to how research data is made available, used and accessed since EAGDA was formed.
In 2017, the partners decided to put the EAGDA model on hold and commission research to explore whether and how it could be improved.
EAGDA commissioned Professor Jane Kaye and her team at the Centre for Health, Law and Emerging Technologies (HeLEX) in Oxford to undertake this review. Read the report:
Data policy models for funding models [PDF 858KB].
Reports and responses
EAGDA commissioned a team from the University of Maastricht and University of Edinburgh to explore the idea of data ownership, and to find out if it has an impact on whether and how data is shared in the UK and internationally.
The project included:
- an analysis of how different legal terms describe responsibilities and rights over data
- a survey of over 200 researchers and data managers.
Academic papers relating to the research are currently being submitted for publication.
Sanctions and accountability
Researchers using data from participants have a responsibility to protect this data and only to use it for legitimate research purposes.
EAGDA examined what sanctions funders, institutions, repositories and publishers can use if researchers are found to have misused data or there has been a breach of data security.
Read its recommendations in the
evidence [PDF 128KB] and
position [PDF 51KB] papers.
Data management plans
Funders have policies requiring grant applicants to set out how they plan to manage and share their data, but there is often little transparency about how these plans will be assessed.
final report [PDF 76KB] and
supporting materials [PDF 209KB] sets out recommendations for funders on how best to implement, uphold and be transparent about policies on data management and sharing plans.
Best practices for infrastructure development and data curation
In October 2016, EAGDA held a meeting at the UK Data Archive to discuss best practices for data curation and infrastructure management.
The aim was to bring together people from different disciplines to discuss the challenges of and share approaches to managing the increasing volume and richness of data being generated by research.
final report [PDF 99KB].
Governance of data access
Through UK cohort studies, EAGDA has carried out research into the current governance of data access to understand:
- what data access systems have already been developed by studies
- their fitness for purpose in the current move towards increased data sharing
- if there should be coordination between studies on data access.
final report [PDF 748KB] and its
supporting materials [PDF 1.3MB] set out recommendations to EAGDA funders on how to support good governance methods for access to data within their research communities.
The funders issued a
joint response to the report [PDF 50KB].
An article about these issues, written by EAGDA funders, was published in the International Journal of Epidemiology in December 2017.
Risks of harm from data misuse
A common concern about data sharing is the risk of harm or distress to research participants if their personal data is misused.
EAGDA decided to look into:
- what kinds of harm might result from breaches in research data security
- whether there was evidence that risks of these harms arise in UK academic research.
In February 2015, the Nuffield Council on Bioethics and EAGDA commissioned the Farr Institute to review the evidence relating to harm resulting from the misuse of personal data.
The review feeds into Nuffield’s report on ethical issues of using biological and health data.
Incentives to support data access
Funders want to encourage researchers to share their data where appropriate. But there are many reasons why researchers may be unable or unwilling to invest the time and resources needed to make their data available.
In 2013, EAGDA carried out a study to find out:
- what factors help or hinder researchers in making the data they generate more widely available
- how to create incentives to promote data sharing.
Published in May 2014, the
final report [PDF 698KB] and its
supporting materials [PDF 992KB] make recommendations on how to build incentives and embed cultural change.
Protecting research participants’ confidentiality
Research participants are often given a guarantee that any data they provide cannot be traced back to them. But as technology develops it may be possible to use data from different sources to piece together a person’s identity.
In 2013, a method was developed for doing this using genomic data. It only worked in a specific set of circumstances, but it proved that re-identification from genomic data was technically possible.
In response, EAGDA examined the risk of re-identification for participants in genomic studies in the UK. It then issued a
statement highlighting how funders can ensure the confidentiality of research participants [PDF 33KB].
The funders issued a
joint response [PDF 26KB], accepting its recommendations and identifying how they could coordinate actions to reduce risks to confidentiality.