This paper describes the use of participatory action research in the development and trialling of an iPad application designed to provide monitoring and self-care for Indigenous Australians with heart failure. The pilot study research involved health experts, an IT team and Indigenous heart failure patients in three cycles of development and critical reflection. The researchers describe the steps they took to ensure community participation and ownership of the project, which is based on evidence that IT-supported health education can be successful in decreasing re-hospitalisation and improving self-management skills. This participatory action research pilot project is the first demonstration that an iPad application can be developed to provide health care support for Indigenous Australian heart failure patients.

Background/Aims: Self-care program assisted by information technology can be highly effective in lowering re-hospitalisation and improving heart failure (HF) knowledge and self-management skills. To date, limited self-care resources have been developed specifically for Aboriginal and Torres Strait Islander patients. The aims of this project were to (1) develop HF self-care educational materials that would be engaging, interactive, simple to navigate, useable by patients, carers and healthcare workers within the hospital and community settings; (2) to evaluate their effectiveness on HF knowledge, self-care behaviours and user friendliness. Methods: This study used a mixed method design including participatory action research for the development of a self-care app using a pre–post test design and validated questionnaires to evaluate effectiveness. Results: There were a total of 19 participants involved in the development and design of the app, including cardiologists, software designers, heart failure specialists, Indigenous elders, healthcare workers and five patients and their families. Feedback from these stakeholders included aspects of fonts, colours, images, language and health literacy. Patients involved in the pre-post test were 60% male; mean age 61.2 years; 60% NYHA Class III; 80% married. Overall, HF knowledge improved by 13%; self-care behaviours by 3.2% and satisfaction 86.2%. Conclusion: Patients enjoyed participating in designing the app and showed improvement in knowledge, self-care and satisfaction. Outcomes from this pilot have been encouraging enough for our team to proceed to a larger powered trial.

This paper describes the development and trialling of Fluid Watchers Pacific Rim: an iPad application designed to provide monitoring and self-care for Indigenous Australians with heart failure. The project is based on evidence that IT-supported education can be successful in decreasing re-hospitalisation and improving self-management skills. This project is the first demonstration that an iPad application can be developed to provide health care support for Indigenous Australian patients.In this paper, the authors describe an Action Research methodology, which involved health experts, an IT team and Indigenous heart failure patients in three cycles of development. They also describe the steps they took to ensure community participation and ownership of the project. The Fluid Watchers Pacific Rim trial provides positive initial findings which suggest that Indigenous heart failure patients enjoy using the application and improve their knowledge and self-care. The authors are currently developing a Randomised Control Trial to fully evaluate the application.

Dracup, Kathleen RN, DNSC, FAAN; Dunbar, Sandra B. RN, DSN, FAAN; Baker, David W. MD,MPH Author Information

ISSUES:This article considers the problem of deciding which health care outcomes are important and relevant for (1) developing management recommendations for clinical practice guidelines and (2) evaluating patients' responses to treatment.DECISIONS:The Heart Failure Guideline Panel sponsored by the Agency for Health Care Policy and Research (AHCPR) decided that for both purposes the relevant outcomes are those experienced directly by patients: mortality and health-related quality of life (HRQOL). Changes in intermediate outcomes, such as test results of various kinds, were deemed insufficient evidence of effectiveness.CONCLUSIONS:In the context of heart failure, mortality risk (prognosis) can be measured using a variety of biochemical and physiological variables, but changes in these variables do not appear to correspond to changes in prognosis. For this reason, the Heart Failure Guideline Panel recommended that patients' responses to treatment be guided by signs and symptoms, rather than test results (for example, echocardiographic measurement of left-ventricular function or exercise-tolerance testing). HRQOL is best assessed by direct patient self-reports. Although patients may be influenced by a host of other variables (for example, mood, adaptation to chronic disease, placebo effect), self-reports will probably always represent the "gold standard" in assessing HRQOL. The reliability and validity of these reports can be enhanced by using standardized instruments or by incorporating questions from such instruments into the history-taking aspect of patient evaluation and monitoring. Finally, physical examination and submaximal exercise testing can provide additional information that can supplement patient reports. Information from these sources must be evaluated carefully in light of patients' self-reported HRQOL.