Event

The patient is at the center of survey, health preference, and patient-reported outcome (PRO) research. By their nature, hard-to-reach populations are difficult to engage in health research, as they may not be recruitable through commonly used channels or may need additional assistance with survey tasks or different modes of administration for PROs and preference tasks. 

With survey, preference and PRO research increasingly being conducted online due to time and budgetary efficiencies, the likelihood of successfully involving hard-to-reach populations becomes ever smaller. But when the research question concerns the hard-to-reach populations, how can we ensure that the results reflect their views? 

The moderator will open the session by introducing the topic and speakers. (5 minutes). Dr. Marco Boeri will discuss the importance of involving hard-to-reach populations in surveys, PRO, and health preference research and the benefits this can bring, as well as the barriers to participation for such populations. He will draw on his extensive experience in preference and survey research to suggest engagement strategies and methods, such as pictographs and simplified English to decrease task complexity, that may work better in hard-to-reach populations. 

Then 2 case-studies from researchers who have made significant efforts to involve hard-to-reach populations in health preference research will be presented. Dr. Luis Pilli will present his research group’s work on using dyadic discrete choice experiments (DCEs) to enable persons with dementia to participate in healthcare decision making alongside informal caregivers. The design strategy and results of the pilot study will be discussed. 

Dr. Rachel Milte will present her research group’s work on the feasibility of using DCEs to elicit the service preferences of people with mild intellectual disability. Dr Milte will discuss the results of the think aloud study. The session will finish with a moderated Q&A from the audience.