Centre For Community-Driven Research

Personal Experience, Expectations and Knowledge (PEEK) studies use a single protocol. They are mixed methodology studies including an online questionnaire and structured interview. This approached is used as our aim is to have routine and proactive collection of patient experience and expectation data by an independent agency. All reports are publicly available and collectively, this results in a repository of patient experience data, with transparent and systematic presentation of results. The program is the result of 2 years protocol and feasibility testing. As at 2024, 2,140 patient interviews with matching data have been collected. PEEK has a multidimensional protocol that can be crossvalidated and covers a holistic range of domains. Participants in PEEK studies have the chance to reflect on everything they have experienced, then, acknowledging that they hold their own expertise, we ask them what their expectations and recommendations are for the future. This gives us all the direction we need to make decisions about treatment, care, information and communication. It was validated by Ernst&Young (May 2025) that this is one of the largest repositories of patient experience data of its kind. Pathways: As at 31 December, there have been 32,968 interventions or assessments completed through the Pathways service. The most common age group accessing the service was between 45 to 64 years of age, and the majority (74%) were women. 57% in 2024 were from metro areas and 43% from rural/regional areas. There was 100% compliance with the Pathways protocol from nurses engaged in the program in the 2023 to 2024 period. The National Patient Organisation Network (NPON) is the professional body for patient groups in Australia. In 2024, members participated in an audit of activities to demonstrate our collective contribution to the health system. We conducted an audit in 2024 that showed NPON members have a combined health system investment of over $200M, with income reflecting 39% from donations and bequests, 30% from goods and services, 21% from the government, 1% from investments, and 9% from other sources. Of the organisations that received government funding, two received over $10M, three received between one and $4M, four received between $500,000 and $1M, nineteen received between $100,000 and $300,000, fourteen received between $10,000 and $99,000, and six received between $900 and $6,000.