Population Research UK Phase 1: Partnership Design & Dialogue
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
The purpose of this award is to develop the basis of Population Research UK which will transform the impact of the UK’s world-leading Longitudinal Population Studies (LPS). This proposal is for a nine-month ‘design and dialogue’ development programme delivered by HDR UK working in partnership with the longitudinal populational studies community and existing research data infrastructure providers. It will include work on a prototype portal to make consented datasets discoverable and accessible for a broad range of research and innovation users across academia, industry, public bodies, charities and the public. The project will include community engagement and be actively managed through a Programme Board mechanism with milestones and deliverables agreed with the funders.
Technical Summary
The purpose of this award is to develop the basis of Population Research UK through a partnership design and dialogue programme. The focus will be on the design of a clear partnership led, user-centred delivery model which will be articulated in a detailed “prospectus”/commissioning document outlining the expectations and technical requirements of PRUK. It will include work on a prototype portal to make consented datasets discoverable and accessible for a broad range of research and innovation users across academia, industry, public bodies, charities and the public. The project will include community engagement and be actively managed through a Programme Board mechanism with milestones and deliverables agreed with the funders.
Organisations
People |
ORCID iD |
Andrew Morris (Principal Investigator) |
Description | https://zenodo.org/record/6365584#.YjNsy4_P02w |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | he aim of this scoping review was to develop a set of recommendations for Population Research UK (PRUK) on their approach to participant and public involvement and engagement (PPIE). Information from 18 relevant reports were found and analysed by searching research databases, the grey literature and through stakeholder input. The following recommendations are based on the identified themes related to PPIE in data linkage using longitudinal population studies (LPS): Transparency, Public benefit, Acceptability, Two-way dialogue, Opportunities and mechanisms for decision making, and Education. Building trust was identified as an overarching goal underlying the PPIE activities. |
Year(s) Of Engagement Activity | 2021 |
URL | https://zenodo.org/record/6365584#.YjNsy4_P02w |