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Developing a code of ethics for patient and public involvement (PPI) in research design

2010 Conference

Abstract:

Background:

Five (out of ten) Research Design Services (RDSs) offer small grants to researchers who would like service users/carers/the public to be involved in developing research funding applications, and this workshop will highlight the types of involvement funded by RDSs.

As an RDS, we often find that researchers are unsure whether there are ethical implications in involvement at the design stage. The National Research Ethics Committee (NRES) and INVOLVE issued a joint statement (2009) clarifying this position, however greater clarity on this issue is required. We suggest a code of ethics is needed to illuminate the ethical grey areas in user involvement in research design.

Target audience:

  • clinicians/academics/health professionals
  • service users/carers/the public.

Aim: identify acceptable ethical practices for PPI in research design.

Objectives:

This paper will look at:

  • positive actions at the design stage
  • how to maximise benefit to those involved in research design
  • challenges and tensions in PPI, and their consequences
  • how to minimise and manage situations of potential harm to those involved.

Outcomes:

Attendees will:

  1. be able to recognise ethical practice in PPI
  2. better understand how to produce ethical research applications
  3. potentially produce an RDS code of ethics for PPI.

References

Research Design Services and Public Involvement: A national map (2010) INVOLVE.

Patient and public involvement in research and research ethics committee review (2009) – guidance developed by the National Research Ethics Service (NRES) and INVOLVE.

Authors

Bates ~ Amanda

As a Patient and Public Involvement (PPI) Officer for the NIHR Research Design Service South East, Amanda Bates works with service users to promote their involvement in research design, and also works with them to review funding applications. Amanda also advises researchers about involving service users in research design, from reviewing recruitment strategies to disseminating results.

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Pandya-Wood ~ Raksha

Senior Research Fellow and Regional Patient and Public Involvement (PPI) in Research Lead, National Institute for Health Research (NIHR) Research Design Service East Midlands (RDS EM). Raksha Pandya-Wood oversees all PPI work of the RDS EM across the region. This includes: managing the reviewing process for pre protocol work bursaries; delivering the region’s PPI workshops aimed at researchers; arranging input from lay people for the Scientific Committee; and providing advice and support on PPI in research bids. Raksha is writing up her PhD which used interviews and the Delphi Technique to explore the impact of PPI in cancer research usability.

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