De la enseñanza memorística a la didáctica de la autocrítica

In the context of this research, a person-centred approach is defined as putting the person (healthcare user) at the centre of their healthcare provision. For example, information should be provided to a person living with CCCs in a format and language that they can relate to and understand fully, thereby enabling them to make informed choices and encouraging them to have as much control over their lives as possible.

Research involving the perspective of the healthcare user is a rapidly emerging interest. However, incorporating a person-centred approach into traditional evidence- based research often conflates identities (Greenhalgh et al. 2015). Firstly, personal nuances can be lost: two or more people, concepts or places that share characteristics may become a single identity. Secondly, a healthcare user may have their problem framed through the lens of the researcher and interpreted as a series of risk- assessment guidelines and decisions about healthcare provision. Finally, these people

can be treated as a disease, commonly managed by a clinically defined ‘patient’s agenda’, without consideration of diverse personal or community contexts or the dynamics of the clinical encounter(Greenhalgh et al. 2015; Sturmberg 2014).

It is challenging to involve healthcare users and person-centred approaches in digital health research, and many digital health system developers minimise this aspect (Arsand & Demiris 2008). Most digital health research continues to focus mainly on healthcare providers in large institutions, who are easier to engage through their administrative hierarchy, rather than on vulnerable healthcare users, who face many burdens in their daily lives and are perceived as reluctant to engage with a new system (Gordon & Hornbrook 2016; Graetz et al. 2016; Kontos et al. 2014; Showell & Turner 2013). Further reasons why healthcare users and, in large institutions healthcare professionals, are not readily involved in digital health research is their interest varies considerably. They are not the ones investing in the digital health systems, the institutions are the customer of the digital health system developers. It may also be leveraged a significant number of healthcare providers do not want healthcare users to have access to their own health record, so there is no incentive for them to get them involved (Eysenbach 2001).

Person-centred digital health tools should be designed to have the ability to increase a healthcare user’s personal understanding of their capabilities and improve their health status and management of their condition (Bandura 1997). Many sustainable, supportive digital health tools espoused as person-centred do not fully realise the potential provided by digital technology, because their developers have not considered the real person’s needs in the real world. The design of digital health tools should ensure that a person’s capabilities are understood and taken into consideration during development and early implementation phases (Arsand & Demiris 2008; Hemsley et al. 2018; Showell & Turner 2013).

For healthcare users, there are four qualities that person-centred digital interfaces require: they need to be multimodal, personally and contextually aware, and adaptive (Sainfort, Jacko & Booske 2002). People living with CCCs, as healthcare users of digital health tools, are likely to be mature adults whose every-day basic tasks need to be considered. These include age and health related changes, functional abilities

such as sensor-perceptual processes, motor abilities, response speed, and cognitive processes (Arsand & Demiris 2008; Czaja & Lee 2002; Hemsley et al. 2018).

Arsand and Demiris (2008) suggest the following approaches toward person-centred research and the use of digital health resources:

 testing the digital health resource in the context of and with people who have a real need for the resource’s functionalities;

 using storytelling as an effective way of explaining and garnering how a digital health resource works;

 allocating sufficient time and several meetings; this allows the user to understand the options the digital health resource offers and lets their own creative ideas surface;

 planning for extra time and testing with users; this will ultimately improve the post-intervention data analysis process;

 getting the users to test the digital health tool and log their experiences themselves if at all possible;

 using post-intervention interviews to garner an in-depth understanding of the user experiences;

 consider using groups for comparison and validation;

 selecting the person-centred computer interaction methods that are most relevant for a given context and user.

Digital health system research has involved person-centred approaches with healthcare users to a limited extent. This has been despite repeated evidence that using person-centred approaches to better inform the design development and delivery of digital health systems has the potential to improve acceptance and ultimately health outcomes (Eysenbach 2001; Heard et al. 2000; Hemsley et al. 2018; Lorig et al. 1999; Sainfort, Jacko & Booske 2002; Showell & Turner 2013). Further, early digital health research into the development of shared decision-making tools continued to define the end user as the healthcare provider (Arsand & Demiris 2008).

There is an increasing need to engage and empower healthcare users to play an important role in digital healthcare provision research. There is also a requirement to acknowledge the scarcity of healthcare resources for dealing with ageing populations and the increasing numbers of people living with CCCs. Digital health advances make it possible and affordable to design and implement applications intended for direct use by healthcare users and providers alike. At an economic level, delivering person-centred care from a complex adaptive system perspective can reduce expenditure by better preventing the onset of or better managing CCCs (Sturmberg 2014).

Placing the person, a vulnerable healthcare user, at the centre of their concern should result in a seamlessly integrated digital healthcare system, a digital infrastructure that promotes healthy living and provides support for those in need. Meeting the person’s healthcare needs and expectations and helping them to make sense of their experience of CCCs will maintain their dignity and place living with disease within the changing demands of the real world, a complex adaptive system. Therefore, it is crucial to incorporate a thorough exploration of all healthcare user needs, adopting appropriate person-centred approaches to prevent further digital incompatibilities, and to extend and complement the current focus on shared decision-making.

2.8 SUMMARY

This chapter has reviewed the appropriate existing evidence relating to the research domain of vulnerable healthcare users, shared digital health records, and participatory research evaluation methods. The chapter also describes and discusses models of healthcare, providing a theoretical background for the discussion.

In developed countries, chronic diseases are now the most common and expensive illnesses and carry a steadily increasing personal and economic burden. People living with CCCs are considered vulnerable healthcare users. Further, people living in rural and remote areas bear a disproportionate burden of CCCs because they live in geographically isolated areas and lack access to quality healthcare provision. The problem is exacerbated by a lack of reliable means of transportation to healthcare provision, less education, difficulties with language, diverse cultural beliefs, and limited financial resources.

The goal of healthcare provision should be that every person, family and community maintains responsibility for their own wellbeing, is informed regarding their health status, and is educated as to courses of treatment. The evidence suggests that SDHRs can assist in meeting this goal by facilitating improved sharing, integration, and quality of healthcare while reducing the burden on healthcare provision.

However, the evidence also suggests that many SDHRs have been designed and implemented from political motives, and rely too much on commercial companies, designers, or researchers who identify a perceived user need, rather than involving the intended end user: those involved in either receiving or providing healthcare provision. Further, the perceived user needs of SDHRs and their resulting design have focused on meeting the requirements of healthcare providers or healthcare systems, while overlooking the needs of the healthcare user.

To investigate this requires evaluation methods that look beyond experimental or randomised controlled trials toward gathering real-world perspectives of the experiences and engagement with a SDHR. In Australia, there is currently a gap in contextual evidence concerning healthcare provision for vulnerable populations and their experience of and engagement with SDHRs, specifically MyHR. Real-world insight garnered from these populations is required to explore the gap between the desired outcomes and the experience of and engagement with MyHR by those directly affected by and knowledgeable of local community healthcare provision. The research topic reflected a concern of people living with CCCs in a rural community. Currently there is little contextual, personal, or community knowledge about the experiences of people living with CCCs in rural communities, or the factors that assist or restrict their engagement with MyHR. Evaluating their experience of and engagement with MyHR requires nuanced evidence systematically collected from a particular person and community. Using methodology underpinned by a participatory philosophy and paradigm including the principles of CBPR, focused the research on practical issues by recognising and valuing the knowledge that community members contributed to the co-creation of new knowledge.

Identifying the theoretical context provides a background for how the perspectives of people living with CCCs in rural communities relate to their experience of and engagement with MyHR. Modifying existing healthcare provision models, accepting

healthcare users as agents within a complex adaptive system, and adopting a person- centred model of care, can embed the capacity and role of MyHR as a contemporary resource and offer new opportunities. Viewing healthcare users as agents requiring person-centred care from a complex adaptive system assists the research discussion and supports the key findings as priorities to ensure a positive experience of and engagement with MyHR.

Currently, people living with CCCs in rural Australia continue to access limited healthcare provision that is delivered as narrow, paternalistic, epidemiological research-based ‘patient agendas’. For these vulnerable healthcare users, there remains little contextual evidence that SDHRs support their contemporary quality healthcare provision. This research will explore how people living with CCCs in rural Australia experience and engage with MyHR using a subjective qualitative research methodology.

Chapter 3 presents, describes and discusses the research methodology required to address the research objectives identified in section 1.2.2 and the research questions identified in section 1.2.3.