Page 166 - ITU KALEIDOSCOPE, ATLANTA 2019

2019 ITU Kaleidoscope Academic Conference

monitoring; secondly, to understand the attitudes and values management of their health, including to inform behavior
around data sharing and social sense-making. The survey change and track progress on specific health goals.
consisted of 14 questions on demographics, personal health
informatics practice, sustainable development goals, data 2.1 Personal health informatics
sharing, and an open-ended question on the current practice
(i.e. framed as “What information and data do you use in Li et al. [4] formally define personal health informatics
your everyday life that you find relevant for your simply as a class of applications “that help people collect and
wellbeing?”). The 981 respondents in the survey, the reflect on personal information.” The field has gained
majority of whom are from North America, were recruited increasing popularity due to several developments, including
via virtual snowballing, social media channels and a research the rise of quantified-self movement [5], the availability of
panel via an online survey platform. affordable self-tracking technology, and the proliferating
phenomenon of datafication of individuals and societies [6].
The paper is structured as follows: the next section provides The promise of the self-tracking devices to offer individuals
a broad overview of digital health, paying attention to health a non-subjective and unambiguous assessment of their
informatics and the value proposition of data for health. This physical wellbeing and the state of their bodies has been part
is followed by an introduction of the notion of data justice of society for over a century; the weigh scales have played a
and its relevance to the digital health domain in general, but predominant role in this regard [7]. Beyond the development
also to health informatics specifically. Various formulations of new technologies used for personal health informatics, the
of data justice are discussed, after which is distilled a list of 21 century self-tracking landscape has also introduced new
st
requirements to inform technology designs. This is followed considerations, including the commoditization of personal
by a proposal of a health informatics architecture that is data, new value dimensions associated with aggregate data,
informed by the data justice principles. Lastly, the merits of and the wide sharing of data beyond the individuals who the
this architecture are discussed, juxtaposed to other related data is about [7], [8]. Therefore, while personal informatics
technologies. fundamentally regards the use of own data by individuals for
their benefits, the contemporary reality is that personal data
2. DIGITAL HEALTH AND HEALTH and its use exists within a broad, multifaceted ecosystem.
INFORMATICS

Digital health, the confluence of information and
communication technologies (ICTs) and health, has opened
up numerous opportunities to both enhance the delivery of
existing health interventions and introduce new technology-
driven health interventions [3]. Digital health includes
telehealth, tele-consultants, tele-coaching, social networking,
and online communities, online access to records, as well as
independent self-monitoring apps. In recognizing the
potential of technology and innovation to enhance health
services, the seventy-first World Health Assembly
underscored the need to “ensure that digital health solutions
complement and enhance existing health service delivery
models, strengthen integrated, people-centered health
services and contribute to improved health, and health equity,
including gender equality, and addressing the lack of
evidence on the impact of digital health”[3].

One of the core elements within digital health is health Figure 1 - Motivation and uses of personal informatics
informatics, comprising the technologies for the
management of electronic health records, medical data, The use of data towards the achievement of health outcomes
health indicators and personal health data. Traditionally, the has traditionally been premised on the argument that more
bulk of health data collection and processing was undertaken and better data leads to better health choices and decisions,
by health service providers, with individuals as the primary and that the increasing availability of health information on
sources of health data, as well as the primary beneficiaries of the Internet would lead to the emergence of ‘informed
the health outcomes associated with the use of the data. This patients’ [9] and ‘digitally engaged patients’ [10]. The
data, which represents one of the key resources for the transtheoretical model (TTM) of behavior change [11],
business operation of health providers, typically exists in the which has been the predominant model for the psychology
form of electronic health records. However, with the of intentional behavior change, has also informed the
growing ubiquity of health technology tools, individuals are formulation of personal health informatics models such as
increasingly also participating in the collection and the stage-based model of personal informatics [4] and the
management of their health data. In the context of personal lived informatics model of personal informatics [12]. In our
health informatics, individuals are collecting data for self- research, we have identified, through the thematic coding of

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