Introducción a la didáctica de la Filosofía

This section provides a background to SDHRs. The section provides a historical overview, a description and discussion of digital health record systems, characterises the elements of digital health, and finally discusses the role of a SDHR.

The appropriate incorporation of a SHDR into healthcare provision has the potential to provide a complete, real-time, digital version of a person’s paper health records, with the added benefit of a personal perspective. A SDHR allows information to be instantly and securely available to authorised users. Over the next decade, SDHRs have the potential to transform the way healthcare is communicated and provided.

2.4.1 Historical overview

Hippocrates developed the first known medical records in the fifth century B.C. so that information could be transmitted to other physicians. In the 1960s, doctors began to openly acknowledge, where in some complex situations patients’ complete health histories would be beneficial, they were not accessible (Weed 1964, 1969).

There is evidence that there are increasing numbers of problems associated with paper-based health records (Burnum 1989; Hershey, McAloon & Bertram 1989). For example, storage problems, lost or misfiled records, duplication of effort, incomplete records, bad handwriting, and writing errors in records. These problems make decisions about treatment and ensuring the quality of healthcare challenging, inefficient, and at times dangerous (Almutairi 2011; Greenhalgh et al. 2009; Young et al. 1998).

In principle, a person’s health record should be accessible, coordinated, and include information about the care provided by multiple healthcare providers. It should also incorporate population-based information; e.g., immunisation and vaccination schedules and results of routine cervical and bowel screening tests (Almutairi 2011). Traditional paper-based patient records have long been impractical and are unable to provide these functions fully (van der Lei et al. 1993).

The idea that healthcare users should have access to and ownership of their personal health records is not new. It has long been acknowledged that healthcare users would benefit from viewing their records and should be able to take them home (Coleman 1984). Research that involved giving healthcare users their medical records to read was conducted more than 30 years ago (Baldry et al. 1986). In other countries, healthcare users are allowed to inspect and request copies of their health records (McQuoid-Mason 1996). For example, in 1998 all member countries of the European Union Data Directive enacted legislation allowing healthcare users to access their medical records (Eysenbach & Jadad 2001). The need for the availability of comprehensive health information, whenever and wherever required, has favoured the storage of patients’ health information as digital health records (Lin 1999). The requirement for continued improvement in the quality of healthcare provision remains the motivation for implementation of a SDHR (Kopetsky 2011).

All healthcare systems have complex sociocultural implications. This means that they are complex adaptive systems, which require deeply rooted components that are multifocal, nonlinear, interrelated and interdependent, social and technical. A change in one part of the system affects other parts, further increasing the complexity of healthcare provision. The introduction of IT into complex healthcare systems has implications that require cultural changes for all stakeholder roles (Leykum et al. 2007; Martin & Sturmberg 2009; Muhammad, Teoh & Wickramasinghe 2012). Despite the evidence suggesting that a lack of appreciation of and attention to fundamental complex sociocultural implications leads to the failure of any new initiative in healthcare systems (Cresswell & Sheikh 2009), IT health initiatives continue to be motivated by politics rather than by the needs of healthcare users or providers (Showell 2011). From the outset of such initiatives, this results in alienation of stakeholders (Showell 2011; Showell & Turner 2013).

Healthcare is an information-rich industry. Countries in the Organisation for Economic Cooperation and Development (OECD) continually face challenges in the delivery of quality healthcare provision. The recognition that digital health technology is expanding provides opportunities to explore this area in depth (Briones 2015), and the use of digital health technology has implications for all stakeholders. There is a need for a comprehensive transitional SDHR that can handle not only multiple layers of diverse information but also improve the flow of this information between all stakeholders (healthcare users, healthcare providers, and government agencies).

A comprehensive, transitional digital health system would provide opportunities to improve the quality of healthcare and ultimately improve health outcomes. SDHRs have the potential to play a significant role in all current healthcare reform agendas. It is for these reasons that the Australian government chose to build MyHR (Muhammad, Teoh & Wickramasinghe 2012).

2.4.2 Description of digital health record systems

The umbrella term ‘digital health’ incorporates, but is not limited to, areas such as eHealth8_{, mobile health, telehealth and telemedicine, health information technology,}

wearable devices, and personalised digital medical devices (Scholz 2016). The term eHealth came into use in the year 2000 (Pagliari et al. 2005), and a systematic review by Hans et al. (2005) identified 51 definitions of eHealth. ‘eHealth’ has been used to describe health and healthcare activities carried out with the assistance of ICT, particularly the internet, that support healthcare provision, as well as personalised health systems for healthcare users (Standards Australia 2016; WHO 2016a). The lack of agreement and standardisation of the meaning of eHealth has caused confusion among stakeholders (Pagliari et al. 2005; Showell & Nohr 2012; WHO 2012). For the purpose of this research, we defined the following relevant components of digital health records within a common and agreed digital health space: electronic medical records (EMR), electronic health records (EHR), and personal health records (PHR). For clarity and comprehensiveness, the WHO Global Observatory for eHealth Series (2012, p. 11) offers the following definitions.

EMRs are clinically focused, contain clinical records and are generally held within a single clinical establishment.

An electronic medical record (EMR) is a real-time patient health record with access to evidence-based decision support tools that can be used to aid clinicians in decision-making. The EMR can automate and streamline a clinician’s workflow, ensuring that all clinical information is communicated [within a single establishment]. The EMR can also support the collection of data for uses other than clinical care, such as billing, quality management, outcome reporting, and public health disease surveillance and reporting (WHO 2012, p. 11).

EHRs contain personal health information acquired from one or more healthcare provider establishments. They have the ability to be shared across a broad range of healthcare providers.

The electronic health record (EHR) is a longitudinal electronic record of patient health information generated by one or more [clinical] encounters in any care delivery setting. Included in this information are patient demographics, progress notes, problems,

8 _{There are a number of ways electronic health is written, for example eHealth, ehealth, e-health and e-Health. I have chosen to} refer to electronic health, in this thesis, as digital health. However, for the sake of reference accuracy, I have retained the original choice of depiction of the term in all quotations and references to publications.

medications, vital signs, past medical history, immunizations, laboratory data, and radiology reports. The EHR automates and streamlines the clinician’s workflow. It has the ability to generate a complete record of a clinical patient encounter – as well as supporting other care- related activities directly or indirectly via an interface – including evidence-based decision support, quality management, and outcomes reporting (WHO 2012, p. 11).

PHRs are a universally accessible, life-long tool, owned by the healthcare user and shared with all their identified healthcare providers.

It is a universally accessible, layperson comprehensible, lifelong tool for managing relevant health information, promoting health maintenance and assisting with chronic disease management via an interactive, common data set of electronic health information and eHealth tools. The PHR is owned, managed, and shared by the individual or his or her legal proxy(s) and must be secure to protect the privacy and confidentiality of the health information it contains (WHO 2012, p. 11).

2.4.3 Characterising elements of digital health

When describing eHealth, Eysenbach (2001) presented the ‘e’ in eHealth not as electronic but as 10 essential ‘characterising’ elements. These are displayed and summarised in Table 2, which is adapted from Eysenbach (2001, pp. 1-2). These 10 elements suggest that quality digital healthcare provision is, or should be, understood as a contemporary, dynamic provision or enhancement of healthcare provision supported by digital technology. Digital healthcare provision aims to allow an active role for all users. An active role means that all users are informed, have choices, have access to information, and are actively involved in their healthcare decision-making processes (Eysenbach 2001).

The concept of digital healthcare provision should be encouraged by accepting and supporting the ideal of the informed healthcare user and their desire to engage, rather than by considering them as ‘threatening intruders trespassing into a forbidden zone’ (Eysenbach & Jadad 2001, p. 6). Further, real-time information about the treatment decisions made by healthcare providers could allow continuous feedback to help improve healthcare user outcomes. Equally, real-time information provided by the healthcare user could provide continuous feedback about their needs to the healthcare provider, helping to better inform quality decisions about delivery of healthcare provision, such as the transitional mix of healthcare provider skills required during any healthcare user’s transitional journey (Moberly 2017).

Table 2. Ten essential ‘characterising’ elements of eHealth

1 Efficiency Avoiding unnecessary duplication of diagnostics and therapy by the more active involvement of the patient

2 Enhancement of the quality of healthcare provision

The patients have the ability to communicate with and compare different healthcare providers and specialists

3 Evidence-based health Proven science and evaluation form the basis of healthcare interventions 4 Empowerment Universal, equitable person-centred healthcare provision. Patient choice,

collaboration, quality, participation with better access to patient records and healthcare information on the internet. Griffiths et al. (2007) claim that it would be unethical for patients not to be involved in decisions about their health.

5 Encouragement Encouragement of the relationship between the patient and the health professional develops shared decision-making and endorses equality in the relationship.

6 Education Education of healthcare professionals and patients is essential. 7 Enabling Enabling information exchange and communication facilitates cohesive

communication between different healthcare establishments and consumers 8 Extending Extending the scope of healthcare: patients can use the internet to access

and obtain a range of online healthcare services, potentially at a global level. 9 Ethical challenges The patient–professional interaction poses new challenges for online

professional practices, informed consent, and privacy and equity issues. 10 Equity Equity of healthcare is one of the promises of e-health, but at the same time

there is a considerable threat that e-health may broaden the gap between the ‘haves’ and ‘have-nots’. (Eysenbach 2001; Eysenbach & Jadad 2001).

Like healthcare users, healthcare providers require skills in the use of ICT, experience or familiarisation with sources of high-quality information (Shepperd, Charnock & Gann 1999), and confidence in the use of digital health tools, to allow them to engage competently in digital shared decision making.By characterising the ‘e’ in eHealth as 10 essential elements, Eysenbach (2001) challenges paternalistic, siloed models of continuing healthcare provision, and provides an alternative context that empowers all stakeholders and informs them of the practical possibilities of the delivery of contemporary shared digital healthcare provision.

2.4.4 The role of a shared digital health record

Any SDHR is only as good as its commissioners, designers and users (Almutairi 2011). At any one time, multiple stakeholders from multiple sources may require access to a person’s SDHR, to support the many roles required to provide quality healthcare. Heard et al. (2000) identified and ordered the roles of a SDHR; we adapted and summarised this information, which is displayed in Table 3.

Table 3. Roles for the a shared digital health record

Supports healthcare user involvement  Protects personal privacy

 Allows healthcare users to view information  Accommodates healthcare users’ self-

management

 Ensures accountability of healthcare providers Supports healthcare users  Forms the basis of a historical account

 Anticipates healthcare needs  Describes preventative measures

 Identifies deviations from the anticipated trend  Accommodates decision support

Supports communication  Supports continuing care and case management

 Accesses medical knowledge databases  Coordinates reports

 Support electronic data interchange and email generation

 Enables record access when and where required  Supports selective retrieval of information Supports management and quality improvement  Enhances the efficiency of healthcare providers

 Facilitates management tasks

 Demonstrates and improves cost-effective practice

 Accommodates succession planning  Provides a legal record of events Supports population healthcare  Supports policy development

 Provides evidence to support development and evaluation programs

Supports enquiry and learning  Supports research

 Assists with audit  Supports education.

The intention of any SDHR should be to support the delivery of person-centred healthcare and, where required, to facilitate the transition of complex healthcare needs, including the complexity of communications between the healthcare user, their multiple healthcare providers, and the healthcare system. The literature includes these under the umbrella of quality health outcomes: equity, efficiency, and quality of care (Institute of Mitnick, Leffler & Hood 2010; Muhammad, Teoh & Wickramasinghe 2012; Tang 2003).

Describing, characterising and contextualising a support role for a SDHR clarifies its role in engagement and facilitation of the delivery of quality healthcare provision.

The adoption of a relatively new concept, MyHR, requires all stakeholders to develop awareness, acceptance, skill, and an integrated understanding of the descriptions, characteristics, and roles of its components. Recognising and applying these elements early in the experience of and engagement with MyHR may offer the essential resources to equitably equip all stakeholders equitably.