Page 167 - ITU KALEIDOSCOPE, ATLANTA 2019

ICT for Health: Networks, standards and innovation

the open-ended survey question, the predominant pathways Beyond the risks of social control, this has the potential to
to impact as well as the motivations and current practice of open up individuals to the risks of exploitation through
the participants with regards to personal informatics. Figure surveillance capitalism and commoditization of personal
1 highlights the main “motivation and use” themes with their data, as has been demonstrated, for example, in the cases of
corresponding coding reference frequencies. 23andMe, Facebook, and Cambridge Analytica [17]–[19].

Table 1 - Motivations and styles of personal informatics Thirdly, the empowerment narrative echoes the
technological determinism sentiments, which are not
Motivation & use / Tracking universally valid and consistent. In our survey results, on the
style investigation of the participants’ use of personal health
Directive Documentary Diagnostic Rewards Fetishised informatics towards health outcomes and the attitudes

towards data sharing, we coded 18 references that expressed
both a strong resistance and refusal to use and / or to share
Awareness and monitoring X personal health data. For example: “I don’t use information
or data. I take my medicines and vitamins, and see my doctor
Benefit for others often” (GIS_806); “How I feel, do not use data” (GIS_504),
Compare and reflect X “Mindfulness of my moods and stress level; awareness that I
Curiosity and information am the major actor in my life, but that I can’t control
Dealing with an ailment X X anything outside myself” (GIS_379), where the participants
Informing action X emphasized the reliance on self-awareness as opposed to on
Maintaining health and X technology devices and data; “Actually none because
wellbeing everything changes and everyone has their viewpoint to
Reach new goals and improve X make you believe what they are telling is true” (GIS_596),
expressing the lack of trust in the system stakeholders.
The motivations and uses of personal health informatics
identified in our research correspond to three of five of Health informatics tools and technologies are employed to
Rooksby et al. [13] style styles of personal information empower patients to achieve better health and to improve
tracking. These observations support the position that as health service delivery by health service providers. The
individuals engage in the collection and use of personal impact pathways from these digital resources to specific
health data, through various impact pathways and a health outcomes are non-trivial and need to be critically
combination of personal conversion factors [14], they are understood, taking into consideration the situations of the
empowered to pursue and achieved desired health outcomes. different actants, the contextual factors, as well as the overall
This empowerment narrative of personal health informatics digital health ecosystem.
has informed many digital health programs and projects
around the world. It has, however, been criticized and shown 2.2 Health data ecosystem
to present an overly simplified techno-utopian perspective
that fails to consider the nuanced complexities of personal Individuals are the primary unit of attention within the health
health informatics. domain, as far as being the main beneficiaries of the targeted
health outcomes. They, however, exist as one of the actants
Firstly, while the importance of the informational and within a complex ecosystem consisting of a variety of
technology resources cannot be denied, the empowerment stakeholders, including health service providers, health
narrative fails to recognize the varying agency as well as the industry stakeholders, public sector entities, households, and
endowments of conversion factors, such as underlying data communities, as well as other civil society stakeholders. The
and digital illiteracies, as well as general illiteracy, for use of data towards the achievement of health outcomes,
different individuals and population groups [14]. In an therefore, permeates this complex ecosystem and needs to be
empirical research investigating “informational practices” of considered when taking into consideration the interactions
32 mid-life women on the use of hormone replace therapy with and the data exchanges between the different
(HRT) for relief of menopausal symptoms, Henwood et al. stakeholders.
[9] found that there was a strong reluctance on the part of the
participants to take on the implied responsibilities of data Firstly, in the context of the sustainable development data
management; they observed problems with the information ecosystem or that of future data-driven societies, sharing of
literacy of the participants; and there were also challenges personal data needs to be considered not only with
associated with information-sharing in medical encounters individuals’ personal social circles but also with other
with health professionals. stakeholders within the wider data ecosystem. For example,
the role of citizen-generate data to support the monitoring of
Secondly, the proliferation of personal health informatics progress towards the sustainable development goals, through
technologies that track and monitor our everyday functioning direct contributions to the indicators or via proxy indicators,
has the potential to unleash Orwellian techno-dystopia of has been recognized and well highlighted in the literature.
panoptic surveillance assemblages that extend paternalistic
social control by the strong and the powerful [15], [16].

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