Addressing capacity and consent complexities in research

                               

Speaker(s):  International guest presenter - Dr Victoria Shepherd (Senior Research Fellow, Centre for Trials Research at Cardiff University), Chair: Dr Nicola Straiton (Senior Research Fellow, Nursing Research Institute)

Research involving people with impaired capacity to consent raises complex issues, particularly around the involvement of substitute decision makers, which often results in this population being under-served by research.

This presentation will share the key findings from the CONSULT research programme which uses a systems-based approach to explore the ethical, legal, and methodological challenges of conducting research with people with impaired capacity, and to develop interventions to support their inclusion.

It will focus on four workstreams:

1) exploring the barriers and facilitators to research involving people with impaired capacity,

2) development of the NIHR INCLUDE Impaired Capacity to Consent Framework to help researchers design trials that are more inclusive of this population,

3) development and evaluation of a decision support intervention for family members making research decisions, and

4) exploring the acceptability and feasibility of advance research planning to enable people to express their preferences about taking part in research during future periods of incapacity. The findings from CONSULT inform changes to research governance and practice and support future research involving adults with impaired capacity to consent.

Dr Victoria Shepherd leads the CONSULT research programme which explores the inclusion of under-served populations in research with a particular focus on adults with impaired capacity to consent and the development of interventions to support their inclusion. She also leads a number of methodological studies embedded in clinical trials to ensure they are more inclusive of under-served groups and to help develop evidence-based strategies to support inclusion. She currently holds a Churchill Fellowship exploring international perspectives on the concept of advance planning for research participation.

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