This section describes the research topic, introduces the aims, objectives, and questions of the research and outlines the research approach.
Managing the rising prevalence of CCCs is a major challenge facing governments and healthcare systems internationally. Many people now live with more than one CCC. Eighty per cent of people with CCCs can effectively engage and better manage their conditions if they are involved in their healthcare provision (eHealth Initiative 2012). The progression of CCCs is transitional and requires continuity of care. Changes in health events can, if communicated effectively and treated early enough, respond well to care, either medical intervention or community and carer support (Martin et al. 2011; Martin & Sturmberg 2009).
Receiving quality healthcare, particularly when living at a distance from the nearest provider, is a barrier that may be overcome by using a SDHR. Full engagement of healthcare users with a SDHR allows complete assessment, interpretation and communication of the changing requirements of their complex health conditions, and far more effective management of required interventions. A SDHR can offer efficiencies in the longitudinal provision of quality healthcare. It can facilitate continuity of care across a range of settings (personal, public, primary, community, secondary, tertiary and palliative care) and the transfer of real-time complex clinical and social knowledge in efficient and appropriate ways (Primary Health Care Advisory Group 2016). Thus, vulnerable communities can be supported and involved in the changes needed to meet the transitional requirements of their CCCs.
A successfully integrated SDHR can deliver substantial benefits to people requiring healthcare and to healthcare providers, but for it to be supported and engaged with, it must take into account all their contextual concerns (Jolly 2011). If MyHR is considered an opportunity to meet the requirements of person-centred healthcare provision, it offers the opportunity of engaging and involving people with CCCs in the provision of that quality healthcare. However, there is currently no practical or articulated structure for community implementation of MyHR.
Between 2012 and 2016, MyHR has received personal registrations from only eleven per cent of the total population (ADH 2016b). These registrants are essentially innovators or early adopters. The roll out of MyHR at national, regional and, most importantly, local community levels is costing billions of dollars. At the same time
people living with CCCs in rural communities continue to face challenges in obtaining access to quality healthcare. This highlights questions about why and how
MyHR may be able to support those living in rural communities to address their real problems in accessing care. Investment in MyHR, as opposed to direct service delivery raises a point of contention for these vulnerable communities. Currently there remains no evidence that MyHR supports personal engagement or integrated healthcare provision in local communities. Vulnerable healthcare users continue to access healthcare within paternalistic siloed models of care.
A rural southern Tasmania community identified the topic of this research. They wanted to know how a SDHR could be beneficial for a person living with CCCs in a rural community and what obstacles they could encounter during their experience and engagement with the SDHR. To ensure that the research community remained actively engaged throughout and benefitted from their participation in the research, we considered it appropriate that the research was conducted using a participatory philosophy and paradigm and CBPR methodology. This provided a cooperative community framework for gathering subjective, qualitative evidence at personal and contextual levels that were appropriate for evaluating the experience and engagement with MyHR of people living with CCCs in a rural community.
1.2.1 Research aim
The research aimed to emphasise practical outcomes identified by exploring the experience of people living with CCCs in a rural community in their engagement with Australia’s shared digital health record, MyHR.
1.2.2 Research objectives
The research objectives within the overarching aim of the research were:
Ro1. To clarify what people living with CCCs in a rural community require from MyHR.
Ro2. To recognise how people living with CCCs in a rural community experience MyHR.
Ro3. To investigate why people living with CCCs in a rural community engage with
MyHR.
1.2.3 Research questions
Rq1. What is the experience of MyHR for people living with CCCs in a rural community?
Rq2. Why do people living with CCCs in a rural community engage with MyHR?
1.2.4 Research approach
Gathering contextual evidence of the experience6 and engagement7 of a community
with MyHR requires the systematic gathering of real-world narratives that cannot appropriately be measured or translated into numbers. Measurement and numerical analysis methods can diminish or overlook the personal and contextual aspects of the information (Greenhalgh et al. 2015; Trickett 2011). In the past, ‘person-centred’ evidence has referred to the gathering and conflating of objective quantitative data upon which to make decisions about healthcare provision. A medico-defined ‘patient’s agenda’ has been imposed on people who live with CCCs (Greenhalgh et al. 2015; Hills & Mullett 2000). To gather subjective, contextual evidence about people living with CCCs in a rural community and the delivery of their community healthcare, and to answer the research questions, required the development of equitable and co-operative relationships between all research partners including the researcher. These relationships could then allow contextual decisions about the creation and delivery of quality healthcare. Therefore, the research adopted a participatory philosophy and paradigm with the characteristics of subjective ontology, an extended epistemology, and axiology, together with the use of CBPR, a subjective qualitative methodology (Heron & Reason 1997). The CBPR methodology was inclusive of the research partners and recognised the affect and effect of their background, experiences and unpredictable social world, while acknowledging the researcher’s own perspectives reflexively (Mertens 2005; Ritchie & Lewis 2003).
The use of CBPR methodology requires a deep belief in partnership (Minkler 2005). This methodology enabled a transparent exploration of a rural community and their personal understanding and meaning as they experience the real world.
6 In the context of this research, the concept experience of MyHR is described as, an observation of developing knowledge and practical contact with their MyHR.
[The] synergy that partners seek to achieve through collaboration is more than a mere exchange of resources. By combining the individual perspectives, resources, and skills of the partners, the group creates something new and valuable together—something that is greater than the sum of its parts (Lasker, Weiss & Miller 2001, p. 184).
The CBPR methodology supported the researcher and provided them with the facility to research with, rather than for, a traditionally difficult-to-access community. The methodology did not involve economies of scale, and addressed community suspicion of research by actively involving the community as partners engaged in the research at all stages from topic definition to translation of results. Thus, as a research community the partners became key informants about their community culture.
This research design required flexibility to respond to the emerging needs of the research community, anticipation of the unpredictable needs of living with CCCs, and what they required of MyHR. Once ethical approval (HREC-H0013781) and local approval were granted, Tasmania Rural Primary Health Services arranged three local rural group meeting venues and invited people from the community (as depicted in section 3.3.2, Figure 5) who were living with two or more CCCs, to attend one of the three introductory group meetings. Nineteen people living with two or more CCCs were recruited as the research community. Data were collected from February 2014 to January 2015 in three phases:
phase one: pre-experience of MyHR;
phase two: registration and early engagement with MyHR;
phase three: post-experience of and engagement with MyHR.
Data collection involved group meetings, individual semi-structured interviews (SSIs) and the researcher’s reflective journal. During each data collection phase:
three group meetings, lasting between 90 and 120 minutes were facilitated by the researcher;
SSIs with each research partner, lasting between 60 and 90 minutes, were conducted by the researcher;
Data collection tools included a voice recorder, group and interview guides and the MyHR personal health record (PHR) portal, as described in section 2.5.2, Figure 2. Data were transcribed concurrently with data collection; this assisted the verification of transcripts by the partners and the groups (member checking). All voice-recorded encounters were transcribed verbatim, ensuring that data not commonly repeated were not missed, that all data from all partners were considered, and that no data were overlooked. Notes and memos for the reflective journal were recorded on the transcriptions.
Data analysis was structured using a transparent systematic thematic framework approach. Its aim was to map themes and identify findings for interpretation and discussion. This was achieved through three iterative phases of data:
data management: included iterative stages of familiarisation with the transcribed data, identifying a thematic framework, indexing labels and charting the labels to categories;
data description: included mapping the categories to themes;
data explanation: included understanding and interpretation of the findings. Data management was initiated by achieving familiarity with the transcribed data by reading and re-reading each transcript, repeatedly listening to the audiotapes, and recording initial thoughts and recurrent ideas. An initial framework was developed
by drawing from a priori and emerging research community views. Organisation and
review of the data involved indexing the partners’ accounts to 55 labels and charting these to 13 categories. Data description was accomplished by mapping the categories to three themes: self-identity, knowledge, and access; this process identified nine findings.Data explanation involved interpretation of these nine findings which, when considered in relation to the research questions, led to the emergence of three key findings. These were described and discussed in a way that addressed the research questions and complemented, contrasted with, and extended the existing evidence. By facilitating a participatory paradigm, the principles of CBPR, and a thematic framework approach to data analysis, the research clearly demonstrated how involvement of a rural community and their inclusion in digital healthcare research could support better design and delivery of SDHRs. A vulnerable community
participated in the generation of knowledge for future communities, and although the
researcher facilitated the research, the research community accomplished it. This endorsed shared responsibility and ownership, and ultimately enhanced our understanding of the experience of and engagement with MyHR for people living with CCCs in a rural community.