Addressing capacity and consent complexities in research

This event is hosted by the Nursing Research Institute,  St Vincent's Health Network and the Australian Catholic University and SPHERE Nursing and Midwifery Implementation Science Academy.

International guest presenter Dr Victoria Shepherd, a Senior Research Fellow and registered nurse based in the Centre for Trials Research at Cardiff University will deliver this webinar (hybrid event), and the session will chaired by Dr Nicola Straiton, Senior Research Fellow at the 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.