Exploring the experiences of and engagement with Australia's shared digital health record by people living with complex chronic conditions in a rural community

This research explored the experience of people living with complex chronic conditions (CCCs) in a rural community and their engagement with Australia's shared digital health record (SDHR). People living with CCCs in rural communities are considered vulnerable healthcare users and frequently experience unique challenges in obtaining access to quality healthcare. A SDHR may address some of these challenges and facilitate opportunities for quality healthcare provision. However, the evidence suggests that the design and implementation of many SDHRs has been politically motivated, and has relied too much on a perceived user need identified by commercial companies, designers or researchers that has focused on meeting the requirements of healthcare providers or healthcare systems, but has overlooked the needs of the healthcare user. Australia launched its version of a SDHR, My Health Record (MyHR), in 2012, but enrolment remains low and there are challenges in its practical implementation. There is still little contextual evidence that MyHR supports healthcare users in rural Australian communities with a person-centred or integrated approach to their healthcare provision. The topic of this research was identified by the community of research partners (hereafter referred to as the research community), i.e., people living with CCCs in rural southern Tasmania, during an annual review of their community healthcare provision. The topic reflects the research community's concern about the capacity of a SDHR to be beneficial for a person living with CCCs in a rural community, and the obstacles that affect their engagement. To address this community concern required research methods that gathered realworld perspectives of the research community's experiences of and engagement with MyHR. We used subjective qualitative methodology underpinned by a participatory philosophy and a research paradigm that included subjective ontology, extended epistemology, axiology, and community based participatory research (CBPR) methodology. The research design involved a series of phases to first obtain rich examples of the research community's experience of and engagement with MyHR, and then to rigorously validate these. Each phase progressed through iterations of action and reflection. Following an introductory phase, there were three phases of data collection: pre-experience of MyHR, registration and early engagement with MyHR, and post-experience and engagement with MyHR. Data collection techniques included group meetings, semi-structured interviews and the researcher's reflective journal. The data collection tools included audio recordings, a group guide, a semistructured interview guide and live interaction with MyHR as a healthcare user. Data were collected over a 12-month period and incorporated concurrent data transcription and verification (member checking). Data analysis was structured in three phases: data description, data management and data interpretation. The phases were further subdivided into five iterative stages: familiarisation, identifying a thematic framework, indexing, charting, mapping, and interpretation. This process ensured that the characteristics and experiences of the research community were thoroughly explored and consistently recorded by linking the research objectives to 55 indexed labels that were charted to 13 categories and finally mapped to three themes: self-identity, knowledge, and access. Scrutiny of these themes identified nine findings which, when considered in relation to the research questions, identified the three key findings as the need for tailored facilitation, resilience and reflection. Although there is little published evidence that the use of facilitation increases the engagement of vulnerable healthcare users during their introduction to SDHRs, this research identified that tailored facilitation--facilitation tailored to recognise the diversity of the healthcare user's needs‚ÄövÑvÆcould instil and support the competence and confidence required for acceptance of SDHRs. Although there is also little evidence suggesting a need for building resilience in vulnerable healthcare users or their communities during their adoption or use of SDHRs, the results of this research indicate that vulnerable healthcare users should demonstrate and build resilience to inform quality healthcare provision and the implementation of SDHRs. The key finding of reflection demonstrates the benefits and challenges of applying a CBPR approach to digital health research. The benefits would not have emerged through a researcher-focused paradigm. The challenges require strong researcher‚Äö- community partnerships developed through time, trust and flexibility on all sides. These key findings complement, contrast with, and extend the existing research evidence. The research community was receptive to experiencing and engaging with MyHR and believed that MyHR registration should occur at a national level. However, for MyHR engagement and utility to be realised at a regional and local level, all communities and individuals require contextually appropriate information, training and support. MyHR does not realise its full potential because system designers and healthcare providers persist in marginalising and undervaluing healthcare users' real perspectives and requirements. However, the research community's ability to demonstrate and build resilience suggests that digital health information needs to be relevant and accessible to everyone, irrespective of their physical or cognitive ability and digital knowledge. This research advocates that, rather than these criteria being regarded as a deficiency of the person or community, they should be viewed as a deficiency of the health system and rectified through changes in community healthcare provision. The research contributed to health informatics and digital health knowledge at three levels: substantive, methodological and theoretical. At a substantive level, people living with CCCs in rural southern Tasmania identified the research topic as reflecting a concern of their community. Their identification of the research topic and their engagement from inception and through all phases of the research enabled the successful design and delivery of a subjective qualitative research project within the field of digital health in a vulnerable community environment. At a methodological level, this research has contributed by introducing and engaging a rural community in digital health research. The research design challenged and encouraged a traditionally difficult-to-engage vulnerable community to be directly involved in a research community. To extend and complement this focus on shared decision-making, researchers should not rely only on controlled experiments, but should become comfortable with the use of participatory paradigms including CBPR, a combination of data collection methods, and a thematic framework approach to data analysis. Further, to fully experience and engage in a digital healthcare research requires capacity-building in technology tools and digital healthcare provision. This research significantly contributed by identifying that the principles of CBPR do not consider capacity-building technology and digital healthcare. Therefore, the principles of CBPR need to evolve to recognise that capacity-building in technology and digital healthcare require acknowledgement and inclusion. At a theoretical level, the research has contributed to digital health research knowledge based on person-centred care. It identified the perception that healthcare provision marginalises and undervalues the capacity of vulnerable healthcare users to benefit from digital health tools. The results highlight that MyHR, and all SDHRs, need to be viewed as operating within the broader context of the provision of preventative and continuing quality healthcare and should be viewed by all stakeholders as an adjunct to any quality healthcare intervention. In conclusion, enrolment in and engagement with MyHR can enhance the delivery of healthcare, and its implementation should be regarded as a process-improvement strategy driving a change toward person-centred quality healthcare. This research lays the foundations for future studies to address how best to translate the theoretical concept of person-centred care from a complex adaptive system perspective into direct involvement of real people in research using digital health tools. Such studies should ultimately transform the adoption, use and utility of SDHRs, assure continuity of information, and improve outcomes for people living with CCCs in geographically isolated communities.