"I just don't know enough": Australian perspectives on community involvement in health and medical research

There is increasing global support from governments and other funding bodies for community involvement in research, alongside a scientific and moral imperative for responsible and ethical research practice. Ninety per cent of Australian patient-led organisations in rare diseases have clearly articulated research priorities, indicating a desire among people affected by disease to be involved in research that impacts their communities. Philanthropic research, which is likely to have predominantly community-minded priorities, is worth over AU$1 billion annually and increased more than 100% between 2007 and 2017.

This research aimed to understand public perspectives on community involvement in health-related research activities, and to inform the development of guidelines for genomic researchers to improve this involvement.

A 37-question survey was completed by 1,156 members of the Australian public via Dynata. The survey was co-designed by the Involve Australia Working Group of community members within Australian Genomics. Results from 1156 responses were analysed.

Key themes emerging from the survey data that impact potential involvement were low community confidence to contribute, a limited understanding of community involvement, roles and recognition, trust and governance of data, perceived trustworthiness of research funders, and factors related to time and personal resources. A variety of motivations for involvement were also stated.

Members of the Australian public are interested in research involvement; however the differences between involvement and participation are poorly understood and a variety of barriers still exist. Researchers must actively reach out into communities and offer opportunities to engage with research and identify community priorities.