Patient perspectives of a patient-held health file

Background Patients struggle with navigating the complexities of their healthcare journey. Healthcare providers historically control the consultative process. Recently this has changed and patients are increasingly being encouraged to take on a participatory role in the process. Patient-centred models of health information exchange include stand-alone, tethered and fully integrated systems in an effort to provide timely access to accurate patient health information. Objective Given difficulties of implementing a national personal health record in Australia, alternative models of health information storage and exchange are being explored. One alternative explored utilises two patient-held health files (PHF) – A6 notebook and a USB memory drive. This thesis provides an insight through a qualitative lens into the perspectives of an older multi morbid cohort of patients and their use of a patient held health file (PHF). Methods This study utilised an interpretive phenomenological approach with semi-structured interviews of 31 participants and 2 focus groups of 10 participants involved in a 48-month duration randomised controlled trial (RCT) involving two different patient-held health files. The RCT was conducted within Sydney, Australia. Interviews and Focus groups were recorded and transcribed verbatim. A thematic analysis was performed, utilising the software package (N-vivo 11) to organise and code the data using a coding framework. Findings Patients started with positive expectations of their PHF but found it difficult convincing all their healthcare providers to adopt the new process. From the analysis, which focused on the practicalities of using a PHF in clinical and non-clinical contexts, two main themes emerged. 1) The patient-provider relationship including subthemes of consultation structure and patient empowerment and 2) the value of a PHF including subthemes of patient’s experience of value, and value associated with health status. Conclusion The literature promotes a patient-centred approach to health-care, where patients are encouraged to take on a greater participatory role, becoming more responsible for their healthcare. The findings highlight that success in adopting such a role by using a technology such as a PHF is dependent on operating within a collaborative health-care framework. Future research directions include attitudinal and behavioural changes to progress a collaborative custodian framework of health information