An exploration of Aotearoa New Zealander's attitudes and perceptions on the use of posthumous healthcare data.

AIM: Posthumous electronic healthcare data (PHCD) are ubiquitous and increasing in volume. Despite their potential utility and value, no empirically-derived, publicly-generated information exists to guide what uses society may view as acceptable. This study explores the attitude and perceptions of Aotearoa New Zealanders to PHCD utilisation. METHODS: Focus groups explored topics focused around PHCD utilisation, including family access, consent models, infrastructure, anonymity, governance, and commercialisation. Data were transcribed and general thematic analysis utilised to explore themes and topics. RESULTS: Sixty-seven people participated across 12 focus groups (mean=50 minutes). Participants indicated conditional support for a centralised, Government-managed PHCD repository allowing controlled, no-cost access for healthcare and research purposes. Public benefit from data was important. Participants prioritised any benefits being preferentially directed to family, then Aotearoa New Zealanders, then others. Commercialisation from data use was viewed as likely and acceptable. Maori PHCD was considered preferably managed by Maori. Participants struggled to define appropriate levels of family access, anonymity, and consent models. CONCLUSIONS: This study delivers the first empirical evidence of social license for PHCD utilisation, providing guidance for establishing trustworthy data governance. Further exploration of the subject is warranted to guide development of frameworks to utilise PHCD in Aotearoa New Zealand.

Perspectives on involvement in the peer-review process: surveys of patient and public reviewers at two journals.

OBJECTIVE: In 2014/2015, The BMJ and Research Involvement and Engagement (RIE) became the first journals to routinely include patients and the public in the peer review process of journal articles. This survey explores the perspectives and early experiences of these reviewers. DESIGN: A cross-sectional survey. SETTING AND PARTICIPANTS: Patient and public reviewers for The BMJ and RIE who have been invited to review. RESULTS: The response rate was 69% (157/227) for those who had previously reviewed and 31% (67/217) for those who had not yet reviewed. Reviewers described being motivated to review by the opportunity to include the patient voice in the research process, influence the quality of the biomedical literature and ensure it meets the needs of patients. Of the 157 who had reviewed, 127 (81%) would recommend being a reviewer to other patients and carers. 144 (92%) thought more journals should adopt patient and public review. Few reviewers (16/224, 7%) reported concerns about doing open review. Annual acknowledgement on the journals' websites was welcomed as was free access to journal information. Participants were keen to have access to more online resources and training to improve their reviewing skills. Suggestions on how to improve the reviewing experience included: allowing more time to review; better and more frequent communication; a more user-friendly process; improving guidance on how to review including videos; improving the matching of papers to reviewers' experience; providing more varied sample reviews and brief feedback on the usefulness of reviews; developing a sense of community among reviewers; and publicising of the contribution that patient and public review brings. CONCLUSIONS: Patient and public reviewers shared practical ideas to improve the reviewing experience and these will be reviewed to enhance the guidance and support given to them.

Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process.

BACKGROUND: Despite increasing international interest, there is a lack of evidence about the most efficient, effective and acceptable ways to implement patient and public involvement (PPI) in clinical trials. OBJECTIVE: To identify the priorities of UK PPI stakeholders for methodological research to help resolve uncertainties about PPI in clinical trials. DESIGN: A modified Delphi process including a two round online survey and a stakeholder consensus meeting. PARTICIPANTS: In total, 237 people registered of whom 219 (92%) completed the first round. One hundred and eighty-seven of 219 (85%) completed the second; 25 stakeholders attended the consensus meeting. RESULTS: Round 1 of the survey comprised 36 topics; 42 topics were considered in round 2 and at the consensus meeting. Approximately 96% of meeting participants rated the top three topics as equally important. These were as follows: developing strong and productive working relationships between researchers and PPI contributors; exploring PPI practices in selecting trial outcomes of importance to patients; and a systematic review of PPI activity to improve the accessibility and usefulness of trial information (eg participant information sheets) for participants. CONCLUSIONS: The prioritized methodological research topics indicate important areas of uncertainty about PPI in trials. Addressing these uncertainties will be critical to enhancing PPI. Our findings should be used in the planning and funding of PPI in clinical trials to help focus research efforts and minimize waste.