Understanding the healthcare journey from a patient's perspective

Abstract

According to Australian Institute of Health and Welfare (2014) chronic conditions are the leading cause of illness, disability and death in Australia. Tackling chronic conditions and their causes is the biggest challenge facing Australia’s health system. Through interaction with patients and their families it has revealed that they often experience:• a fragmented system, with providers and services working in isolation from each other rather than as a team; service duplication or absent / delayed services;• difficulty in accessing services due to lack of mobility, transport, language, financial barriers and remoteness; and feelings of disempowerment, frustration and disengagement.Our service intend to focus on developing our Integrated Care program to be patient centered, to work with patients, families and carers to deliver individualized care that is led by the patient for the patient. Consumer engagement has shaped and driven the planning and delivery of this project.The project aims to work in partnership with patients, families and carers to capture their perception and their healthcare experience. This involved collecting responses through a validated questionnaire known as Patient Reported Experience Measures (PREMs) provided by the Agency of Clinical Innovation (ACI).The PREMs questionnaire captured most accurately patient's healthcare perspective and generated valuable data on intervention effectiveness and service delivery.We have worked on interventions based on the identified barriers and challenges from the PREMs data results.Patients and especially families and carers identified that they were often at a loss with “Is there any support from community if I have chronic condition or terminal illness?"Part of the many outcomes from this project is the development of 3 information brochures for clinicians, general practitioners and patients outlining essential information. These brochures aims to provide streamlined processes which would hopefully improve access to appropriate interventions and support services in the community.Of the 31 patients from the survey, 75% have identified that, by NOT being able to get access to community health care services is the main reason they experience difficulty in managing their chronic conditions and this is often accompanied by a feeling of despair. Key to our project is the patient’s voice. We engaged consumer representation and learnt how treating families with dignity, compassion and respect promotes autonomy and health-seeking behavior.Feedback in particular from patients has been positive and particularly valuing the holistic and integrated approach to their care:“ Great resource, in easy to read format, basic information to help us navigate the services available in the community”“Don’t like hospitals, I’d rather be in the comfort of my home, pleased to know that help is available”Integrated care has wide reaching impacts, our project has improved connections between patients and community services. This is as much a preventive health initiative that seeks to reduce hospital admissions and negative engagement for patients with chronic conditions.We believe that this project will continue to keep patients with chronic conditions out of hospital, by engaging their families in support and early intervention, thus improving their health and wellbeing.