‘It Shouldn’t Be This Hard’: Exploring the Challenges of Rural Health Research

Abstract

Health research is important for innovation and assessment of health status and health interventions, and maintaining a strong, engaged cohort of rural health researchers is essential for the ongoing improvement of the health of rural populations. Ethical guidelines and processes ensure research is undertaken in a way that protects and, where possible, empowers participants. We set out to systematically examine and document the challenges posed by ethics and governance processes for rural health researchers in Western Australia (WA) and the impact on the research undertaken. In this qualitative study, fifteen WA-based rural health researchers were interviewed. The identified challenges included inefficient systems, gatekeeping, apparent resistance to research and the lack of research experience of those involved in approval processes. For researchers seeking to conduct studies to improve rural and Aboriginal health, extended delays in approvals can hold up and impede research, ultimately changing the nature of the research undertaken and constraining the willingness of practitioners and researchers to undertake health research. Unwieldy ethics processes were seen to have a particularly onerous impact on rural research pertaining to service delivery, multiple sites, and research involving Aboriginal people, impeding innovation and inquiry in areas where it is much needed.

Can Age-Friendly Planning Promote Equity in Community Health Across the Rural-Urban Divide in the US?

“…In the US, rural African American children suffer the highest morbidity in obesity, compared to urban children [3,15]. However, US rural areas lag in health care infrastructure and services [3,16,17]. Lack of access to health care in US rural communities is related to poor health outcomes and high cost [18].…”

Points of contention: Qualitative research identifying where researchers and research ethics committees disagree about consent waivers for secondary research with tissue and data

“…Transcription and data analysis were conducted iteratively. Saturation was defined as the point at which no new themes were emerging [24]. We reached data saturation for studies 1 and 2 but not for study 3, which was a pilot study and did not aim to reach saturation.…”

“…Regulation of health data is broadly considered by researchers to be a barrier to conducting health research [15,17]. Even in the context of more traditional clinical research, RECs come under criticism from researchers on the grounds that they are secretive [18,19], inconsistent [20,21], slow [22], and the ethics review process is unduly burdensome [23,24]. There is a recently emerging literature on how RECs function and make decisions [15,[25][26][27][28][29][30].…”

“No Country Bureaucratised its way to Excellence”: A Content Analysis of Comments on a Petition to Streamline Australian Research Ethics and Governance Processes

“…Australian researchers have published numerous accounts of experiences with the human research ethics and governance application processes, describing those processes as: “unwieldy” (Greville et al, 2019), “fragmented, complex and lengthy” (Vajdic et al, 2012), “complex and convoluted” (Duszynski et al, 2019), “costly” (A. Barnett et al, 2016; Duplancic et al, 2019; Foot et al, 2018), “onerous and time-consuming” (Clay-Williams et al, 2018), and even “unethical” (McGiffin et al, 2019).…”

“…We created a petition to give the Australian health and medical researchers the opportunity to articulate the problems they have experienced while navigating human research ethics and research governance application processes (see Supplemental Appendix 1). Although petitions are not a commonly used tool by researchers, we adopted this approach in order to show that the burdens imposed by current human research ethics and research governance application processes are not confined to those researchers who have described their experiences within the published literature (Barnett et al, 2016; Clay-Williams et al, 2018; Duplancic et al, 2019; Duszynski et al, 2019; Foot et al, 2018; Greville et al, 2019; McGiffin et al, 2019; Rush et al, 2018; Scott et al, 2020; Vajdic et al, 2012), but instead, are widely experienced by Australian health and medical researchers. Our goal was to communicate broad experiences to attract the attention of federal politicians with the ability to enact the reforms needed.…”