Literature DB >> 23536688

Lay REC members: patient or public?

Kristina Staley.   

Abstract

In practice, the role of lay members of research ethics committees (RECs) often involves checking the accessibility of written materials, checking that the practical needs of participants have been considered and ensuring that a lay summary of the research will be produced. In this brief report, I argue that all these tasks would be more effectively carried out through a process of patient involvement (PI) in research projects prior to ethical review. Involving patients with direct experience of the topic under investigation brings added value beyond the contributions typically made by lay REC members, who are often not patients themselves. This is because PI tailors the design and conduct of research to the specific interests and concerns of the people who will actually take part in a project and make use of its findings. If a project has PI in its early stages, then a similar input from lay REC members could at best result in duplication of effort and at worst create the potential for conflict. The rationale for lay REC membership will therefore need to change from 'contributing a patient perspective' to 'ensuring transparency and public accountability in REC decisions'. This has implications for addressing more strategic questions about lay REC membership, including who is best recruited to the role and how they should be expected to contribute in practice.

Entities:  

Keywords:  Ethics Committees/Consultation; Research Ethics

Mesh:

Year:  2013        PMID: 23536688     DOI: 10.1136/medethics-2012-100642

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  3 in total

1.  Public involvement could usefully inform ethical review, but rarely does: what are the implications?

Authors:  Kristina Staley; Jim Elliott
Journal:  Res Involv Engagem       Date:  2017-12-11

2.  A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards.

Authors:  Raksha Pandya-Wood; Duncan S Barron; Jim Elliott
Journal:  Res Involv Engagem       Date:  2017-04-04

3.  Ethics review of big data research: What should stay and what should be reformed?

Authors:  Agata Ferretti; Marcello Ienca; Mark Sheehan; Alessandro Blasimme; Edward S Dove; Bobbie Farsides; Phoebe Friesen; Jeff Kahn; Walter Karlen; Peter Kleist; S Matthew Liao; Camille Nebeker; Gabrielle Samuel; Mahsa Shabani; Minerva Rivas Velarde; Effy Vayena
Journal:  BMC Med Ethics       Date:  2021-04-30       Impact factor: 2.652

  3 in total

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