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. We derived measures of findability based on the first element of the FAIR principles (Findable, Accessible, Interoperable, Reproducible). We applied these to 13 UK health datasets and measured their findability via two major internet search engines in 2018 and repeated in 2021. RESULTS: Among 12 survey respondents, 11 indicated that they made metadata publicly available. Respondents said internet presence was important for findability, but that this needed improvement. In 2018, 8 out of 13 datasets were listed in the top 100 search results of 10 searches repeated on both search engines, while the remaining 5 were found one click away from those search results. In 2021, this had reduced to seven datasets directly listed and one dataset one click away. In 2021, Google Dataset Search had become available, which listed 3 of the 13 datasets within the top 100 search results. DISCUSSION: Measuring findability via online search engines is one method for evaluating efforts to improve findability. Findability could perhaps be improved with catalogues that have greater inclusion of datasets, field-level metadata and persistent identifiers. CONCLUSION: UK organisations recognised the importance of the internet for finding data for research. However, health datasets available for research were no more findable in 2021 than in 2018.

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. This creates a complex challenge for consent management that has previously been achieved through paper-based processes. As the study begins a new phase with the objective of inviting all new parents within the Bradford region to participate in the study the solution also needs to work with existing maternity systems. This paper considers the specific challenges of converting the often grey rules around consent of children into an electronic system that is transparent and supports the trust of both the family and the clinical and care teams recruiting research subjects into a large cohort study, and describes the user centred design and technical approach taken to resolve it.

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. Values are personal attitudes or long-term beliefs which may influence stakeholder functional and non-functional requirements. Motivations are psychological constructs related to personality traits which may be viewed as stakeholders' long-term goals in RE. Emotions are cues to stakeholders' reactions arising from value/motivation conflicts. The method is supported by a website which illustrates the taxonomy with explanations and scenarios describing problems arising from value conflicts, and from poor understanding of stakeholder values. Two method validation studies were undertaken: first, an evaluation of the website and method by novices and RE experts; and second, case study applications of RE value analysis in real-world industrial practice. The method was used by all practitioners, although in different ways, some used it to create an agenda of issues for analysis while others employed the VMEs to interpret stakeholders' views and manage stakeholder negotiations. The validation studies provide evidence for the acceptability of the method for industrial practitioners, illustrating how value-related problems are identified and analysed effectively by the method. The utility of analysing VMEs is compared to other 'socio-political issues'-oriented methods in RE and methods which focus on monetized values in product requirements.

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. This group has allowed the programme to uniquely respond to questions of how consent and data sharing should work with DataWell for direct care, as well as exploring other uses of the data, including planning and research.

Quantifying the longitudinal value of healthcare record collections for pharmacoepidemiology.

We introduce an information score for longitudinal healthcare record data, specifically in the monitoring of chronic conditions. The score is designed to capture the value of different observation patterns in terms of shaping and testing clinical epidemiological hypotheses. The score is first developed for the simple case where equally spaced observations are most informative, then extended to a more context-specific version where the optimal density of observations can be elicited. It can be interpreted as a measure of the average quantity of information provided by each observation in an individual's time course, where information is lost whenever the observation density deviates from a defined optimal density. We illustrate the score on routine healthcare records from the population of Salford, UK - focusing on repeat testing of liver function in people with common long-term conditions. We demonstrate validity of the score in terms of concordance between score levels and clinically meaningful patterns of repeat testing.

Obesity atlas and methodbox: towards an open framework for sharing public health intelligence workflows.

The large growth in data sources relevant to public health has not been matched by a growth in human resource for producing intelligence to support decisions or generate new insights. There is a need to bring scarce public health expertise into closer alignment with data and data processing methods to support timely public health analysis. The difficulties of developing and sharing this expertise in large organisations such as the UK's National Health Service have long been recognised. We report findings in this area across two projects Obesity Atlas and Methodbox, which are developing and sharing best practice between Public Health Analysts in England, and we address the relevant generic knowledge management problems in the Public Health community.

User engagement by user-centred design in e-Health.

This paper describes the application of user-centred design (UCD) methods and a user engagement (UE) approach to a case study development of a visualization tool (ADVISES) to support epidemiological research. The combined UCD/UE approach consisted of scenario-based design, and analysis of the users' tasks and mental model of the domain. Prototyping and storyboarding techniques were used to explore design options with users as well as specifying functionality for two versions of the software to meet the needs of novice and expert users. An evaluation of the prototype was carried out to assess the extent to which the expert model would support public health professionals in their analysis activities. The results of the design exploration requirements analysis study are reported. The implications of scenario-based design exploration, participatory design and user engagement are discussed.