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CAPTION: Professor Angela Webster (right) with project members Professor Kirsten McCaffery (left) and Dr Danielle Muscat.
Researchers across Sydney Health Partners have begun a trial of smart phone technology to help chronic kidney disease (CKD) patients to better manage their condition and their lives.
The SUCCESS smart phone app contains information and generic health literacy skills training to encourage CKD sufferers to be more involved in making decisions about their care.
Chief investigator, University of Sydney Professor Angela Webster, says the project was prompted by evidence that people with lower health literacy and from Culturally and Linguistically Diverse (CALD) backgrounds suffer from more rapid progression of CKD and higher mortality.
“There is no standardised education system for CKD patients across New South Wales Local Health Districts (LHDs),” said Professor Webster. “Existing programs are often ad hoc, treatment-specific and delivered at critical decision points. That leaves patients under pressure and ill-prepared to make informed health decisions across the whole trajectory of their disease.”
The app being developed by Professor Webster and her team is designed to empower patients with generic health literacy skills training and provide information that has been simplified - based on world’s best-practice principles for health literacy - to make it both understandable and actionable.
Professor Webster, who is a Senior Staff Specialist in Renal Medicine and Transplantation at Westmead Hospital, says the content has been developed in consultation with patients, kidney haemodialysis staff and renal educators from the Sydney, Northern Sydney, Western Sydney and Nepean Blue Mountains LHDs.
A three month trial of the SUCCESS smartphone app has commenced involving all four districts and, based on previous research, Professor Webster believes CKD patients using the app will have a better experience of the health system.
“We hope they will have fewer and shorter hospital appointments, miss fewer appointments and not require as many emergency admissions.”
The app also responds to the fact that most CKD patients also have other chronic diseases such as diabetes and heart disease.
It unifies information by linking together many existing health care apps in ways that can be customised to suits patient’s individual needs.
“In the health system we organise health care into columns by specialty, even though that’s not generally how patients experience their health,” said Professor Webster. “As a result, patients are often having to integrate multiple pieces of information from different sources and traditionally the health system hasn’t given them much help with that.”
“For that reason, SUCCESS has been designed as a sort of ‘meta app’ which sits above all the other disease-specific apps and tries to unify the healthcare delivery experience.”
“It will help people who might otherwise feel so overwhelmed by the information they receive that they don’t know what to do and so give up.”
The app has been designed with the assistance of the Department of Information Technology at the University of Sydney. In the future the team hopes to test the app across Australia and New Zealand and also with patients dialysing at home.
The project has received a grant from Kidney Health Australia to translate the core components of the SUCCESS app into Arabic. The team is also adapting some of the cultural content for English-speakers from the Indian sub-continent and Pacific Islands.
“Greater health literacy is a skill which can be taught but most people are never shown how to implement the skills to make a difference to themselves and others,” said Professor Webster.
“We want them to have more agency in their health care, to feel confident and content in decisions so they are living their best lives with chronic disease.”