Findability of UK health datasets available for research: a mixed methods study.

Objective: How health researchers find secondary data to analyse is unclear. We sought to describe the approaches that UK organisations take to help researchers find data and to assess the findability of health data that are available for research.

Methods: We surveyed established organisations about how they make data findable.

Designing a Solution to Manage Electronic Consent for Children.

Electronic systems for managing consent do exist but are generally only able to record consent from the research subject directly. Consent for research is also challenging to integrate into many electronic patient record systems. The Born In Bradford study is a large, from birth cohort study in the North of England which requires consent to be recorded by the pregnant mother of a child who will be included in the study from birth.

Addressing the Socio-Technical Challenges of Health Information Exchange Adoption: DataWell in Greater Manchester.

Several high profile, problematic UK health data-sharing projects have shaped NHS professionals' and the public's opinion about NHS data-sharing projects, and there is a substantial body of evidence identifying barriers to Health Information Exchange (HIE) adoption. Socio-technical factors are a significant consideration and this paper describes the approach taken to address these concerns in the design and implementation of a HIE for Greater Manchester.

Value-based requirements engineering: method and experience.

'Socio-political' issues, such as emotions, values and people's feelings, are often cited as problems in the RE process. A method is described for analysing such issues. The method consists of a taxonomy of stakeholders' values, motivations and emotions (VME), with process guidance for eliciting and analysing these issues for the RE process and design implications.

DataWell: Public Involvement in the Development of a Federated Platform for Shared Patient Records in Greater Manchester, U.K.

Sharing personal health data for direct care, health improvement, planning and research is recognised as important to improving the quality and safety of care. However, the complexities of sharing data, including technology, information governance and consent issues, means that many projects have difficulty communicating with the public about why they wish to share data, or what the benefits might be. Great Manchester Academic Health Science Network has established a Public Experience Group to help co-design the requirements for a health information exchange, called DataWell, across over 30 health and care organisations in Greater Manchester.