As the lead consortia member on The Navigator Project, which is funded by the Department of Health and Aged Care, Rare Voices Australia (RVA) is excited to share the first progress update since the project commenced in July 2023. RVA would like to acknowledge our consortia partners, the Sydney Children’s Hospitals Network, the Perth Children’s Hospital, and our data sharing partners, Crohn’s Colitis Australia, Mito Foundation and Tuberous Sclerosis Australia for their ongoing dedication to this important work. Background information about The Navigator Project.
Interim Evaluation Findings: January to April 2024
The Navigator Project interim findings reported below are based solely on data from consumer-led organisation-based telehealth services and the RARE Helpline. Ethics approvals for data sharing from the hospital-based Nurse Navigator Programs (NNP) were not in place during the evaluation period (January to April 2024). It is important to note, these findings are based on limited available data, and strong conclusions cannot be made at this early stage of The Navigator Project.
From January to April 2024, a total of 155 people contacted the telehealth services. Almost 60% of service users were individuals living with a rare or complex disease, 40% were family members or carers and the remainder were health professionals. Of those who reported their jurisdiction and rurality status, 71% lived in New South Wales, Victoria or Queensland. Importantly, 44% lived in a rural, regional or remote area. Given only 27% of Australians live outside major cities, this suggests these telehealth services may be reaching a higher proportion of people in regional, rural, and remote Australia. More data is needed to confirm this observation.
The three most common reasons individuals contacted the services were:
- to get information and/or resources about a disease
- to request access to health services or health system navigation and,
- requests for social support
On average, telehealth service staff recorded 3 interventions for each call, and 115.9 minutes responding to each individual request.
Lessons Learned and Updates from Each Service
RARE Helpline
- Most RARE Helpline service users are diagnosed with a rare disease for which there is no known Australian support group.
- A significant portion of time spent responding to RARE Helpline service users is related to provision of emotional support and reducing overwhelm and feelings of isolation through listening to people’s stories and validating and normalising their experiences.
- Additionally, the Helpline works to build users knowledge, confidence and capacity to self-advocate in the different support systems they need to navigate.
- Data from the RARE Helpline service has highlighted key gaps, including gaps for specific disease areas that RVA advocacy staff were able to feed back to the relevant community organisation.
- Gaps and needs highlighted by the RARE Helpline are actively informing development of the Rare Awareness Rare Education (RARE) Portal.
Consumer-led Organisation Based Telehealth Services
Symptom management support and advice on access to health services or health system navigation were the most common reasons for contact among the consumer-led organisations. Compared with interventions provided to RARE Helpline service users, more users of these disease-specific telehealth services were provided with symptom management and treatment-related information. Consumer-led organisations have reported that being part of The Navigator Project has added value to their services. All consumer-led organisations have incorporated a user experience survey based on the survey developed for the RARE Helpline and agreed to collect additional data/refine data from their services to support evaluation of The Navigator Project. This includes additional demographic data, which will be used to support improvements that better meet the needs of their communities.
Hospital-based Nurse Navigator Programs
Since June 2023, the NNPs have been developing their service models and in April 2024 they soft launched their services. Ethics was approved in July 2024 and data sharing with RVA for evaluation of The Navigator Project has commenced. Data from the NNPs will be included in the next progress update towards the end of 2024.
Key Milestones to Date
Background: The Navigator Project
The objectives of The Navigator Project are to:
- Support people living with rare and complex diseases, their families and carers.
- Support people to improve their health literacy and engage with the health system.
- Link people with existing health services and/or professionals to access specialised or targeted support to manage complex care needs.
- Target telehealth nurse-led support for people with rare and complex conditions, where there is limited information on their condition or access to services, where they are in situations of acute need, or where they are unable to self-manage their condition.
- Increase the potential for system improvement as the data collection and evaluation components of The Navigator Project will generate evidence to guide future government investment for service navigation.
The Navigator Project involves implementing two models of patient navigation support and collecting data from a third model of telehealth services delivered through three consumer-led rare and complex disease organisations.
Telehealth Services
1. The RARE Helpline is a national, non-disease specific telehealth service that aims to provide timely access to information and answer key questions from people living with a rare and/or complex disease. The RARE Helpline is staffed by RVA personnel, including those with qualifications/training in psychology, social work and Mental Health First Aid.
2.Telehealth Nurse Service Navigation Trial Sites: Two discrete non-disease specific services, attached to the clinical genetic services of the Sydney Children’s Hospitals Network (the Rare Kids Navigator Project) and Perth Children’s Hospital (Rare Care Centre Navigator Project). The telehealth nurses provide intensive care coordination and, in some instances, case management.
3. Three consumer-led rare and complex disease organisations providing telehealth nurse services:
- Crohn’s and Colitis Australia
- Mito Foundation
- Tuberous Sclerosis Australia
Data from each of these models will facilitate an evaluation of the impact and benefit to individuals, families, carers, the health system, and the overall cost-effectiveness and sustainability of each model.
