Strengthening Remote Healthcare Through Trial Participation

Overview

Initiative type

Model of Care

Status

Deliver

Published

June 2026

Summary

Torres and Cape Hospital and Health Service (TCHHS), a remote HHS in North Queensland participated in a registry based, randomised controlled kidney trial (SWIFT) - the first clinical trial conducted at four sites within TCHHS.

Dates: January 2025 - January 2026

Implementation sites: Torres and Cape Hospital and Health Service

Partnerships: NHMRC Clinical Trials Centre, University of Sydney

HICOP

Aim

To build capacity and capability and expand clinical trial access for the local population, despite the challenges of remoteness, through collaboration with HHS staff, Qld Regional Clinical Coordinating Centre (QRCCC) personnel, and trial Sponsors.

Outcomes

  • Clinical trial opportunities available closer to home.
  • Capacity and capability building of sites in remote areas.
  • Diversity of national trial data was increased. TCHHS involvement contributed input from a First Nations and remote perspective as First Nations representation is high within TCHHS. This added value to not just the study overall - it ensured representation was within 1% of the First Nations numbers for this population group in the associated registry, ANZDATA.
  • Opportunities for upskilling local staff in a setting where such experiences are not typically available.
  • Staff reported they were re-evaluating the care currently provided to this patient group and exploring ways to optimise holistic care.

Background

Torres and Cape HHS is a unique health service, providing care to more than 27,000 people (of which 63.7% identify as Aboriginal and/or Torres Strait Islander) across an area covering 129,700 square kilometres with a northern boundary with Papua New Guinea. Throughout the HHS there are many different social and cultural settings, and health care needs to be tailored to the community in which it is being delivered. Major facilities are located in Bamaga, Cooktown, Thursday Island and Weipa (Reference: What it is like to work with us: TCHHS www.torres-cape@health.qld.gov.au).

Clinical trials and research are essential to improve patient-focused care and health outcomes for all. Nearly 90% of clinical trials are run from city or urban areas, meaning people living in regional, rural, remote or even outer metropolitan areas do not always have access to them, unless they travel or move'. (Reference: Australian Teletrial Program website). Disparity in health equity leads to fewer treatment options and poorer health outcomes for Australia's regional, rural and remote communities.

The ability to participate closer to home, with the support of family, community, and local health care services, reduces the burden of travel. Consequently, care closer to home increases the potential for participant recruitment and retention, and diversity of clinical trial participants.

The Queensland Regional Clinical Trial Coordinating Centre (QRCCC), established under the Australian Teletrial Program (ATP) has a vision and purpose to improve access to, and participation in, clinical trials for rural, regional and remote Australians. The QRCCC enables sites to conduct clinical trials and teletrials by providing education, remote and onsite support, Sponsor engagement, logistical planning, and regulatory and start-up activities. The Australian Teletrial Model (ATM) is a proven methodology that allows a Primary Site to work with a Satellite Site/s that is geographically remote from the Primary Site to deliver clinical trials safely and closer to home.

Methods

A cluster of four sites within TCHHS participated in SWIFT: Thursday Island and Bamaga (the Control arm) involved six-monthly data collection timepoints, and Cooktown and Weipa (the Intervention arm) involved 3-monthly data collection timepoints over 12 months. The trial used validated questionnaires collected using a tablet computer, to capture participant responses about their health on day of visit and the preceding week, providing a more holistic understanding of their daily life and care beyond the treatment setting. Consumer representatives involved in the design of the trial advised that this would be of interest and feasible for participants.

Using teletrial methodology, the trial cluster was established, consisting of the Primary Site and three Satellite Sites within TCHHS. Close collaboration and communication were critical between the various stakeholders which included TCHHS management across all sites, governance, QRCCC personnel, the Principal Investigator and the Sponsor (NHMRC Clinical Trials Centre, University of Sydney).

The Sponsor provided education of staff, so they understood the trial even if not directly running it. QRCCC provided on-site assistance, travelling to each site for each of the visits except for Weipa, where site staff were involved with data collection, independently, for Visits 2-5. The QRCCC continued to provide regular remote support throughout the duration of the trial. QRCCC conducted facility level assessments of local resources, capability, and capacity, which informed the required level of ongoing QRCCC involvement. Across all sites, QRCCC provided either onsite or remote support.

Discussion

The trial highlighted capability and capacity building in a remote Health Service. For example, following QRCCC's onsite support during the first trial visit, staff at Weipa were able to conduct the clinical trial activities independently and competently at subsequent visits. In Cooktown, during site visits, QRCCC provided hands-on support and upskilling. Subsequently, a staff member delegated to the trial, with no prior clinical trial experience, was able to complete data collection with patients on occasions when data could not be captured during QRCCC's onsite attendance.

Staff appreciated the opportunity to be involved in a clinical trial, even though in a remote location, and felt the trial highlighted the benefit of considering patient care holistically, with a focus on the patient's lived experience:

  • "I have really enjoyed participating in the trial even though in a remote location. It's involved a different kind of sitting down with patients. They can share their [treatment] experience …and it has benefited their care. Thank you for bringing the trial to us." CN, Weipa, 2026.
  • "Participating in the trial over the past 12 months has highlighted the importance of [holistic] management and the need for the clinical staff to be more proactive in the area i.e.  Asking the questions rather than expecting our clients to raise some of their concerns which they can be reluctant to do. Many [of a patient's concerns] occur outside of the unit and not solely whilst [in the unit] and the data collection and subsequent results have certainly raised awareness within the team. These assessments should become part of our standard … assessment." NUM, Cooktown, 2026.
  • "The trial has viewed the patient holistically. Not just the machine, the meds, or blood test results, or just their condition. Thank you for your time and effort to see us and the patients." RN, Cooktown, 2026.

Most patients preferred to have the questionnaires read and presented in person, due to low literacy or preferring connection and interaction. This links with the practice of yarning which is more consistent with cultural norms for First Nations peoples. QRCCC found that yarning before commencing the study activities helped build trust and rapport with the participants. During subsequent visits, some topics previously discussed were revisited and expanded upon which developed the relationship and highlighted that QRCCC staff had been “present†during the past encounter and that they, the participant, had been heard. The extended time needed for some visits reinforced that patient-centred engagement, particularly with First Nations participants, is more important than prescriptive timeframes and is essential for building trust and meaningful participation.

Successfully completing its first clinical trial has strengthened the TCHHS's capability and confidence in delivering clinical trials locally. Continued use of the ATM, together with collaboration between QRCCC, sponsors, and trial sites, and important learnings from First Nations communities, will support expansion of clinical trials in remote regions to ultimately improve health outcomes. Enabling clinical trials to be delivered closer to home reduces travel, financial pressure, and family disruption while promoting equitable access to care.

References

  • Australian Teletrial Program: https://australianteletrialprogram.gov.au/patients/
  • SWIFT protocol: https://pubmed.ncbi.nlm.nih.gov/35590395/
  • TCHHS What is it like to work with us: www.torres-cape@health.qld.gov.au
  • Bessarab, D., & Ng'andu, B. (2010). Yarning About Yarning as a Legitimate Method in Indigenous Research. International Journal of Critical Indigenous Studies, 3(1), 37-50. DOI: 10.3316

Key contact

Anne Hartshorn-Smith

Health Service Evaluation, Research and Translation (HSERT) Branch

Qld Regional Clinical Coordinating Centre (QRCCC)

Clinical Excellence Queensland

Email: anne.hartshorn-smith@health.qld.gov.au