Purpose of the post
Joining the growing Information Governance team, as part of the wider Legal, Trust and Ethics team, this exciting new role provides an excellent opportunity for someone who is looking to use and enhance their information and research governance skills to improve trustworthy access to data for research and innovation that has the potential to transform lives. The successful candidate will work across the entire organisation to provide information governance support to a range of high-profile public health initiatives including cutting edge efforts to coordinate UK health data infrastructure and to facilitate life-changing research in the UK and abroad. This includes regular work with universities, funders, and governmental entities regarding complex data infrastructure and research projects. This fast-paced role will involve regular contact with senior internal and external stakeholders. The successful candidate will share our values, have strong collaboration skills, be comfortable with working at pace and have a passion for professional, high-quality approaches to engagement.
Main responsibilities
- Developing and implementing innovative data governance processes and policies to ensure the safe, secure, compliant and trustworthy use of health data for research.
- Working with partner organisations, including the NHS, universities, research bodies, charities, funders, industry representatives, data processors and Trusted Research Environment (TRE) Host Organisations, developing strong working relationships and driving initiatives to simplify and streamline data governance processes.
- Demonstrating the impact of HDR UK’s innovative work on health data governance through peer-reviewed articles, blogs, bulletins, presentations, and through providing updates to relevant groups.
- Project managing funding calls to accelerate adoption of tools and resources across partner organisations.
- Implementing legal agreements for the provisions of and access to data for research and advising on compliance with UK GDPR and other applicable data protection requirements.
- Advising on compliance with ethical and governance approval processes for data access.
- Providing advice on international data transfers of data, seeking expert legal input where necessary.
- Conducting Data Protection Impact Assessments (DPIAs), preparing fair processing notices, updating and maintaining HDR UK’s Records of Processing Activities (ROPA).
- Working closely with HDR UK’s Patient and Public Involvement and Engagement (PPIE) team to involve and engage members of the public, including HDR UK’s Public Advisory Board (PAB), in the use of health data for research and data governance.
- Developing a strong network of working relationships with stakeholders within and outside HDR UK.
- Providing training to HDR UK staff and members of the broader research community on information and research governance.
Experience
Essential:
- Experience of working in information governance, ideally within research.
- A track record of implementing successful information governance processes.
- A deep and up to date understanding of data protection and privacy laws, particularly UK GDPR.
Beneficial (but not essential) for the role:
- Experience of advising on compliance with research ethics (REC), NHS R&D, and confidentiality advisory group (CAG) approvals processes in any of England and Wales, Scotland or Northern Ireland.
- Experience drafting and implementing relevant legal agreements including data sharing and data access agreements.
- Experience of advising on consent requirements under common law for data sharing.
- Experience of navigating the NHS England DARS process for accessing routinely collected data.
- Awareness of the growing network of TREs/SDEs across the UK.
Skills
- Ability to develop relationships with diverse stakeholders within and outside immediate role.
- Excellent communication skills, written and verbal, including the ability to explain concepts without technical jargon and communicate confidently with people at all levels.
- Ability to analyse complex scenarios, distil key points, identify innovative approaches and take pragmatic actions.
- Proactive and supportive approach to engagement with colleagues to support problem solving with the ability to determine when issues need to be escalated.
- Excellent planning, organisation and time-management skills, with the ability to manage competing priorities in a fast-paced environment.
- Ability to work autonomously and make decisions without supervision.
Please note, as we are a UK-based organisation, applicants must be living in, and eligible to work in, the UK. We are unable to sponsor or take over sponsorship of an employment Visa at this time.
We reserve the right to close this vacancy early if we receive sufficient applications for the role. Therefore, if you are interested, please submit your application as early as possible.
We politely request no contact from recruitment agencies or media sales. We do not accept speculative CVs from recruitment agencies nor accept the fees associated with them.
