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School of Health Sciences

Can an online interactive Tool for Informed Consent (iTIC) improve the process of gaining informed consent for research?

Supervisors

1st supervisor: Professor Amanda Burls

2nd supervisor: Dr Shashi Hirani

Research Centre

Centre for Health Services Research

Project Description

Informed consent is a cornerstone of ethical health research. Nonetheless empirical studies show participants are often unaware they have been enrolled in a research study or what a research study is about. Self enrolment of participants into online studies, including to randomised trials, has grown exponentially. It is important that online consent is truly informed. We embedded recording systems in our own consent pages for online studies and found people did not stay on the page long enough to read it before giving consent (Antoniou 2011). A recent review of interventions to improve informed consent concluded that enhanced consent forms and extended discussions improve understanding and that identification of best practices for studies of informed consent interventions would be helpful (Nishimura 2013).

This PhD would: systematically review best practice for obtaining remote informed consent; iteratively develop with users an online interactive tool for informed consent (iTIC) that can be adapted to different projects; investigate whether “test to learn” processes are usable and acceptable to different types of participants; investigate whether they are effective for ensuring that consent is truly informed and whether, for example, they can improve understanding for low literacy participants; undertake a qualitative study with researchers to explore their views of iTIC; compare iTIC to traditional informed consent in other research studies where it is logistically feasible for potential participants to be randomised to either method of informed consent. Exploring whether it affects recruitment rates, participant understanding, participant satisfaction, researcher satisfaction, adherence, retention rates or the efficiency of conducting the study.

Recommended Skills / Prior Learning

  1. Skills in qualitative research methods
  2. Skills in quantitative research methods
  3. Understanding about how to conduct a systematic review