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102 Systematic review of interventions to support patient decision making about taking part in health research
  1. Jolyn Hersch1,2,
  2. Lauren O’hara1,2,
  3. Ilona Juraskova1,
  4. Phyllis Butow1
  1. 1School of Psychology, The University of Sydney, Sydney, Australia
  2. 2School of Public Health, The University of Sydney, Sydney, Australia

Abstract

Introduction There is growing interest in applying shared decision making approaches to support informed consent, a vital but challenging aspect of conducting clinical research. We systematically reviewed interventions designed to aid communication and decision making about whether to take part in health research. We aimed to describe intervention characteristics and collate evidence of effectiveness.

Methods Eligible papers were peer-reviewed journal articles reporting any intervention-focused study design. Eligible interventions aimed to improve decision quality among adult patients capable of deciding about their participation in health research, by enabling users to address their own information needs (e.g., question prompt list, QPL) and/or incorporate their values into decision making (e.g., decision aid, DA). We searched 5 databases (1990–2023) and Google Scholar.

Results We included 16 studies, of which 9 were RCTs. In 9 studies, interventions were best described as DAs; the other interventions were QPLs or incorporated QPLs. 8 tools were paper-based; 8 were computer-/web-based, facilitating greater interactivity/tailoring. In 5 papers, resources concerned a specific study; 11 were generic but focused on clinical trials. Cancer was the predominant clinical context (n=14 studies). 4 papers cited theories/models and 7 cited standards/frameworks (e.g., IPDAS). Few papers discussed health literacy or cultural considerations. Studies assessed various outcomes, most often knowledge and choice/intention regarding research participation. Interventions generally increased knowledge, with little effect on participation rates.

Discussion Although the review highlights the potential utility of tools for patients considering health-related research participation, we identified some gaps. Most interventions addressed clinical trials in oncology. Given the need for greater diversity in studies, resources should be tested among diverse populations.

Conclusion Future interventions should address non-cancer settings, study types beyond clinical trials, and key emerging areas like genomics/precision medicine. Digital technology offers opportunities to enhance personalization, customize content for different studies, and maximize accessibility for people of diverse backgrounds.

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