Stephen Darlington
order to successfully institutionalize e‐health systems, transform service delivery, increase the efficiency and effectiveness of public sector service provider and citizen interaction, and, through the lens of citizen satisfaction, enhance the legitimacy of e‐government systems in general.
2. Concepts and definitions
E‐health information governance rights are rights that affect stakeholder participation in the functioning of a portable medical record system. Stakeholders include: patients, healthcare providers and the state. I will focus on seven stakeholder rights, namely: consent, privacy, choice, fairness, utility, balancing the rights of the individual versus the common good, and the ownership and use of health information. The analysis used to assess an appropriate balance of rights across the three contrasting e‐health systems will be historical institutionalism and path dependency. Stakeholder’ s capacities, competencies, and capabilities, along with system ableness, will be used to explore power‐relationship ratios and an appropriate balance of rights in each of the three systems.
A brief explanation of the terms to be used is warranted in order to improve the clarity of the argument. Consent refers to two things: informed and capable patient agreement to the transfer of their medical record, and healthcare provider and state agreement( sometimes through rules and procedures) to the transfer of medical records. Privacy rights deal with who has access to, and control over the distribution of, medical records. Australia’ s PCEHR e‐health system gives patients the right to decide what information is included in their portable medical record and who gets to access it and who does not. Choice refers to having more than one option when making decisions and will be linked closely with the concept of capability. Choice will be expressed in Dowding and John’ s( 2012) expansion of Hirschman’ s( 1970) exit, voice and loyalty terms into citizen satisfaction with the quality of government services. The issue of fairness will be dealt with in Rawlsian( Lehning 2009) terms of equal liberty, equality of opportunity, reciprocity and the difference principle. Utility will be discussed in economic terms of the greatest good for the most people expressly in the interest of the state.
Stakeholders in e‐health systems have varying capacities, competencies and capabilities. Here I will use Cowden and Lau’ s( 2012) terminology and Cowden’ s( 2012) linkage with Hohfeldian concepts of the internal structure of a right with one difference. Ableness will be defined as an institutional process that enables capacities to develop into competencies and extended into the capability for competencies to be expressed or used. Ableness will still, according to Dowding( cited in Cowden 2011: 4‐5)“ encompass the external resources and opportunities on needs to complete an act”. Stakeholder competency can be measured on an ordinal scale in two ways. Zero to highly competent, and also in comparison to other stakeholders as more or less competent. This allows meaningful choices about rights allocations to be made.
I use the term rights as an Hohfeldian concept of duty bound obligations comprising action and inaction( Radin 1938). Rights respected or affected will be used as a framework for assessing stakeholder satisfaction with e‐ health systems clearly linking rights in practical terms to the stated goals of e‐health systems – improved service delivery and reduced cost. Stated in these terms, rights systematize the institutionalization of public system service provider and citizen interaction and enhance the potential for service delivery transformation.
Power‐relationship ratios have three essential components: who – the individual, institution, group and state; what – action or inaction is taken; and outcome – resulting in a relative position on an ordinal power scale of more or less power. For example, Australia’ s opt‐in PCEHR could be said to give patients more power over their own choices and the e‐health institution and the state less coercive power over individual choices. In contrast, an e‐health institution that mandates the transfer of medical records to whichever healthcare provider requests them could be said to give less power to the patient and more power to healthcare providers. Hart’ s( 2009: 289) argument that the most useful approach to the observation and measurement of power is one that focuses on control of events and outcomes will be used in this paper.
Historical institutionalism is typically used to redesign existing institutional frameworks rather than create an initial institutional design( Peters, 2012: 85). However, given future path dependencies of e‐health institutions will depend heavily on“ initial choices of policies and structures”( Peters 2012: 84) it should not be surprising that looking forward creates an interest in the initial institutional design. This is especially true as e‐health is an emerging system and its policies and structures are still largely in the design phase. The extant stakeholders
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