A study of transplant online services for patient-centred care

Abstract

This work investigates the uses of the Internet and email in health care and specifically focuses on the use of these technologies in the management and support of patients following kidney transplantation. Health information websites are recognised to differ widely in quality and reliability of their content. This has led to the development of various codes of conduct and rating tools to assess the quality of health websites. However, the validity and reliability of these rating tools and their applicability to different health websites also varies. In principle, rating tools should be available to consumers, require a limited number of elements to be assessed, be assessable in all elements, be readable and be able to gauge the readability and consistency of information provided from a patient's view point.
This study addresses the design and evaluation of a patient-centred transplant online service consisting of a website and e-mail communication. The website focuses on providing health education to patients so that they can conveniently
obtain useful clinical information, as needed in home or workplace settings. The online service was assessed for its acceptability and usefulness from patient's perspectives and for its efficacy in reducing patient's needs to contact primary or
secondary care services regarding day-to-day health issues. The online service was purpose built, informed by a framework developed during this study. The framework can be used by transplant clinicians to develop and maintain their websites.
Work to inform the framework included an evaluation of the quality of information found in kidney and liver transplantation websites. This evaluation used both expert reviews, based on a weighted hformation Scoring (IS) system and involving clinicians in the assessment, and user evaluations where patient's Internet use, and their suggestions about, and interest in, transplant websites were elicited. The use of email in answering health related questions in the group of the patients who took part in the study was also evaluated.
Whilst the hflernet has made it possible for patients and their families to access vast quantities of information that previously would have been difficult for anyone but a physician or librarian to obtain, an important finding of the research is the existence currently of many poor quality websites. The results indicate overall that readily accessible Internet websites for liver or kidney transplantation patients provide a large quantity of, but poor quality, material. Based on surveys of patients needs, the study reported in this thesis highlights the fact that transplant websites should include information about life style in addition to purely medical-related topics. Incorporation of web tools, like email, is shown to effectively help solve many of the daily health problems of patients with organ transplantation. The transplant online service developed as a part of this study showed high levels of patient acceptability and effectively helped reduce the need for patients to access primary or secondary care.
The results of this research support the potential of online services as an innovative approach for patient-centred care in organ transplantation.