Feasibility and ethics of using data from the Scottish newborn blood spot archive for research.

Background: Newborn heel prick blood spots are routinely used to screen for inborn errors of metabolism and life-limiting inherited disorders. The potential value of secondary data from newborn blood spot archives merits ethical consideration and assessment of feasibility for public benefit. Early life exposures and behaviours set health trajectories in childhood and later life.

Gender stereotypes in UK children and adolescents: Changing patterns of knowledge and endorsement.

Across two studies, we investigated gender stereotype knowledge and endorsement in UK schoolchildren, and their impact on academic subject choice. In Study 1, children aged 9-11 (N = 68) and 13-15 (N = 61) completed a newly developed Gender Attribute scale assessing their knowledge and endorsement of gender stereotypes relating to academic subjects and occupations. Participants demonstrated gender stereotype knowledge and endorsement, although significantly higher knowledge than endorsement scores indicated a level of stereotype rejection.

Public preferences regarding data linkage for research: a discrete choice experiment comparing Scotland and Sweden.

Background: There are increasing examples of linking data on healthcare resource use and patient outcomes from different sectors of health and social care systems. Linked data are generally anonymised, meaning in most jurisdictions there are no legal restrictions to their use in research conducted by public or private organisations. Secondary use of anonymised linked data is contentious in some jurisdictions but other jurisdictions are known for their use of linked data.

Public Preferences regarding Data Linkage for Health Research: A Discrete Choice Experiment.

The potential for data collected in the public and private sector to be linked and used in research has led to increasing interest in public acceptability of data sharing and data linkage. The literature has identified a range of factors that are important for shaping public responses and in particular has noted that public support for research conducted through data linkage or data sharing is contingent on a number of conditions being met. In order to examine the relative importance of these conditions a Discrete Choice Experiment (DCE) was conducted via an online questionnaire among members of Ipsos MORI's online panel in Scotland.

Moving from trust to trustworthiness: Experiences of public engagement in the Scottish Health Informatics Programme.

The Scottish Health Informatics Programme (SHIP) was a Scotland-wide research programme exploring ways of collecting, managing and analysing electronic patient records for health research. As part of the SHIP public engagement work stream, a series of eight focus groups and a stakeholder workshop were conducted to explore perceptions of the role, relevance and functions of trust (or trustworthiness) in relation to research practices. The findings demonstrate that the public's relationships of trust and/or mistrust in science and research are not straightforward.

Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies.

Background: The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance.

Beyond NIMBYs and NOOMBYs: what can wind farm controversies teach us about public involvement in hospital closures?

Background: Many policymakers, researchers and commentators argue that hospital closures are necessary as health systems adapt to new technological and financial contexts, and as population health needs in developed countries shift. However closures are often unpopular with local communities. Previous research has characterised public opposition as an obstacle to change.