To examine the impact of the Network-Centred Palliative Care Service Delivery Model using a digital Healthy End of Life Planning (HELP) App on end-of-life care experiences and outcomes of Australians

The Healthy End of Life Planning (HELP) Brief Intervention (BI) introduces Network-Centred Care (NCC) using a digital platform, the HELP App, to enable palliative care organisations and services to leverage community assets and capacity and increase societal participation to support their clients and their carers and improve their end-of-life care experiences. It is an outcome of the comprehensive research at PHPCU to develop a sustainable strategy to integrate expert palliative health care with the informal needs and wishes of patients and carers. The HELP BI can be easily delivered within the day-to-day context of care and requires as little as 5 minutes of thoughtful interaction in any healthcare or community settings by all health care workers, including volunteers. The HELP App is an efficient and economically viable digital platform accessible at no cost to Australians in palliative care (La Trobe University Palliative Care Unit, 2023). The app can be downloaded and used in a personal device like phone, ipad, tablets etc. It offers one central place for clients or their carers to connect with informal networks and plan what tasks and activities they would like support with, and for friends and families to provide support as required. The app facilitates in providing clear idea of what is needed and when, as well as what is not needed, thereby reducing the social barriers that exist in informal setting. At the same time, the HELP App also systematically collects data on the informal end-of-life care networks, allowing services and organisations to measure and report upon the impact of social interventions. By using the HELP App, people agree to contributing their data for research purposes through La Trobe University (Ethics Approval HEC22173). Clients’ data on network-centred care will be generated as the clients or their carers begin using the HELP App, and this data will be collected from the backend of the app. The features of the HELP App includes: - Invite and add contacts to join the network - Clients or their carers can create personalised care needs - Members can choose to offer the help as asked - Members can share the tasks responsibilities among them - Add appointments to the calendar - Chat function for the whole network or the inner circle chosen by the user - Have a conversation in any language - Share documents and photos - Professional in-app tips and education, for instance, how to get started with advance care planning, finding local palliative care services, Aboriginal and Torres Strait Islander resources for end of life, etc. This study uses an Effectiveness-Implementation Hybrid Type I Design, which combines a randomised controlled trial (RCT) to examine the effectiveness of the NCC using the HELP App in improving palliative care outcomes, alongside a qualitative method to evaluate user perspectives. The implementation strategy of the HELP BI will be assessed using a qualitative method, guided by the Normalisation Process Theory (NPT) (Murray et al., 2010)and Consolidated Framework for Implementation Research (CFIR) (Damschroder et al., 2022). This mixed-methods approach enables us to quantify intervention variables for comparison with control groups (Greene et al., 1989) and gain a comprehensive understanding of the factors contributing to successful implementation (Curran et al., 2012). To conduct this study, the Public Health Palliative Care Unit, La Trobe University (LTU PHPCU), is conducting a pilot HELP BI study in collaboration with Australia’s largest community-based specialist palliative care service provider, Eastern Palliative Care Association Incorporated (EPC). As part of the intervention, a half-day introductory workshop on the HELP program, the HELP App and HELP BI will be conducted by by the chief investigator (CI), who is the director of the HELP Program at LTU PHPCU. Following the workshop, a chain of communication and meeting among the research team at LTU PHPCU and EPC team, will be conducted to codesign the study. The next step involves training EPC volunteers on social prescribing and network-centred care approaches, how the HELP app facilitates network-centred care, and how to facilitate clients downloading and using the HELP App. The training will be led by the CI. The training for volunteers will be followed up by a webinar, a questions and answers session, and a follow-up meeting before they interact with clients. The research team will conduct a regular online monthly meeting with volunteers to monitor the implementation process and provide support to volunteers as required. Meeting notes will be collected with volunteers' consent during the workshop, training sessions, and monthly meetings throughout the study period to assess the implementation barriers and facilitators. A separate survey will also be conducted to understand the facilitators and barriers to implementing HELP BI from the EPC staff perspective. To recruit the participants, the EPC staff will invite the clients or their authorised carer in the intervention arm via email to participate in the study. A unique code will also be provided to them to include in the HELP App to indicate their participation in the study. Any trusted person may coordinate the network within the app for the clients but on the consent of the clients or their authorised representative. Since the code is solely known to the clients or their authorised representative, the researchers can verify the consent from the code mentioned in the app. The app can be downloaded and used on the personal device of the user at their own place. Following the email invitation, EPC volunteers will also contact the potential clients or their authorised carer via phone call to follow up on the initial email invitation and seek their voluntary consent to participate in the research. They will be offered a home visit if they would like assistance in setting up the network in the app. Clients for whom a network with 2 or more members is established in the app will be included in the study. Health professionals, EPC volunteers, or researchers do not have direct access to the app to review participants’ data. The deidentified data will be collected from the backend of the app. There is no minimum duration set for interacting with the app. The users can use the app at their discretion. Volunteers will check in via phone call with participants using the app once a month and will offer home visits as required during the project duration. Similarly, researchers will periodically review the app activity of the participants to monitor their adherence to the intervention. After recruiting the palliative care clients, baseline data on the palliative care outcomes for both the intervention and control groups will be gathered. Participants in the intervention arm will receive an introduction to the HELP App and will be regularly monitored by EPC volunteers to ensure effective usage of the app. Any assistance needed in setting up the app or establishing support networks will be provided. Mid-term data will be collected three months after participant recruitment, with final data collection occurring after six months. The final evaluation phase will entail comparing palliative care outcomes between the intervention and control groups to assess the effectiveness of the intervention. The overall duration of the intervention is six months.