Samantha Ashley Adams, PhD, was a beloved teacher, PhD supervisor, and researcher.
She represented the perspective of patients throughout her career. As early as 2002,
Dr. Adams conducted research on reviewing and producing information reliability on
the Web as part of her doctoral work.[1] In one of the earlier works that she coauthored, she explored the use of “trust
marks” which she defined as hyperlinked icons or seals that are placed on Web sites
to denote review by an independent third party.[2] She was concerned that many of the writings about trust marks at the time were critical
of them. Dr. Adams noted many of these criticisms did not address the positive role
of the review processes, and was concerned about how research in this area was not
focused on the patient as the end user. She also was interested in the various approaches
Web sites used to guide patients to health Web sites, recognizing that the process
and pathway followed by patients could significantly influence their experience as
well as their understanding of the information they received.[3] Reliability of online health information was another key theme winding through her
work.[4]
As part of her patient-focused work, Dr. Adams noted that informatics and published
academic literature regarded patients as acting reflexively and proceeding with very
specific information needs and views.[5] However, she believed that individuals need help in developing skills for reflexive
consumerism. Her work examined the role of the state and other political actors in
the reliability of Web-based information within the context of existing relationships
among technologies and users, nations and individuals, and individuals and their skill
development. She noted that when patients describe their care experiences in online
venues, the experience of writing about their care stimulates additional analysis
of the health care process they and others have experienced.[6] In addition, patients' reasons for sharing personal narratives may differ greatly
from those of the organizations encouraging them to share these experiences, and that
patients may be unaware of how organizations use patients' perceptions to frame conversations
and shape other patients' expectations.
In 2008, Dr. Adams addressed blog-based applications and health information in the
context of consumer health informatics.[7] She was concerned that insufficient time was spent on applications available to
the public and how blogs and other tools were being used. A pioneer in this area,
Dr. Adams introduced the idea of health goal-oriented blogging. She considered how
patients act as both information producers and information users within the blogosphere,
and how these actions affect and are affected by health care-related organizations
and policy makers. She noted that a lack of user experiences made it difficult to
meaningfully assess health blogging from the patient's perspective.
Dr. Adams recognized the importance of qualitative research in health informatics,
particularly in the evaluation of information technology and its impacts.[8] She focused on disease management projects and chronic care in the context of technology
and translated these notions from ones of global considerations of disease management
to the local and individual patient level. In writing on the Dutch health system,
she noted the work of disease management project leaders, suggesting that their work
“not only guides the overall project, but impacts the interaction of one clinician
with one patient, as well as traveling to the broader disease management arena through
participation in research, through the development of care consortiums, and through
the honing of standards and protocols within the Dutch health care system.”[9] She worked to describe the variability in development and implementation of disease
management programs in the Netherlands, looking particularly at the wide variation
in their development and implementation costs.[10] In one study, she described eight cardiovascular disease management programs as
a way to find “insight into the forms of disease management and the feasibility of
disease management approach.”[11] She found that disease management level, costs, health care utilization, patient
characteristics, and health-related quality of life of patients varied wildly among
the programs. Dr. Adams realized that activating patients was a key to patient-centered
care and clinicians must act as collaborators. Her work in this area led to the study
of patient reports of experiences with medications as a means of pharmacovigilance.[12]
Dr. Adams continued to recognize the important role of disease management programs
in the health behavior of chronically ill patients by further noting the importance
of the patient focus.[13] She noted that patients needed support to make healthier lifestyle choices. It is
important to listen to their needs and desires, and develop systems that improve communication
among clinicians and between clinicians and patients who have chronic conditions.
She also stressed the need to look for opportunities to motivate and support patients
in the community. Her background in qualitative methods provided a basis for study
of perceptions and use of online diaries for self-management of asthma and chronic
obstructive pulmonary disease from the perspective of both patients and providers.[14] The conclusion—that health care professionals should assist patients in using such
diaries—put patient needs front and center. This appreciation for the interaction
between patients and providers applied to broader issues as well, for example, with
regard to precision medicine as an organizing principle for patient care. She recognized
that the ideas underlying precision medicine were not new, and that large-scale databases,
new methods for categorizing and representing patients, and computational tools for
analyzing large data sets create numerous opportunities, but also a possibility of
loss of patient privacy, an increase in health inequity, greater challenges in ensuring
informed consent, and a loss of focus on the patient.[15]
Although much of Dr. Adams' work addressed patient-facing issues directly, she also
conducted research that highlighted the nuances of patient experience by focusing
on other aspects of the health care system. She was interested in how patients and
physicians interacted on Web sites designed to create patient–physician engagement,
and noted that the presence of physicians could affect patients' perceptions of the
information available in such communities.[16] She also examined how regulators' expectations and experiences differed from those
of the political system with regard to consumer/citizen involvement in review of health
care institutions.[17]
Dr. Adams' patient-focus recognized the importance of all relevant stakeholders in
mobile health (mHealth).[18] In focusing on mHealth, she noted that although mHealth has a role in transforming
health care, it is important to consider its context and the importance of primary
stakeholders, which go well beyond patients to include families and caregivers, among
others. Although patients remained a key focus, Dr. Adams recognized that they do
not act in isolation from other groups in the health care system and considered interactions
as well as individuals.
At the core of Dr. Adams's scholarship was the relationship between individuals (e.g.,
patients, citizens) and institutions (e.g., health systems, governments). She focused
on how the everyday activities of individuals reproduce or change institutional structures
that, in turn, enable and constrain individual activity. An example of this type of
analysis is her treatment of the notion of “the clinic,” in which she takes a novel
perspective on the work of French historian and social theorist Michel Foucault, who
explored the rise of the clinic (i.e., clinic or hospital) where individuals were
redefined as “patients” and subjected to particular modes of assessment and analysis
(the medical “gaze”).[19] While other scholars have examined technology's contribution to the evolution of
the gaze through new methods of medical surveillance, Dr. Adams focused on evolving
notions of the clinic, given the availability of medical information on the Internet.[20] If a person seeks medical information on the Internet, can they truly be defined
as a patient? How do the traditional power relations and knowledge asymmetry between
physicians and patients play out when telemedicine is used and the two are not interacting
in the same space, with the patient vulnerable in a paper gown? She notes that the
traditional brick and mortar “enclosure” of the clinic is being “distributed across
apparatuses that may reveal, but also conceal, certain activities, data, and/or knowledge.”[20]
Dr. Adams was particularly skilled at the juxtaposition of two sources of data, discourse
and activity. One finds frequent references in her work to “discursive practices,”
a term that she uses to refer to several different phenomena. Discursive practices
include the ways that people talk about phenomena in everyday life, formal communications
from government or organizations, and social media activity from both individuals
and institutions. Dr. Adams was able to use discourse analysis as a lens into the
workings of the biocultural systems that we all participate in and examine how technology
affects those workings.
Discourse analysis, particularly that which traverses multiple levels from everyday
interactions among individuals to formal, institutional statements, can reveal subtle
changes or inconsistencies in cultural patterns that are difficult to detect yet later
seem apparent. An example is adaptations in language that reveal changes in scientific
perspectives on what constitutes a disease—revealed ultimately in subsequent versions
of the International Classification of Diseases. Dr. Adams produced a compelling analysis
of discursive practices related to risk, a central topic in social analysis. Her focus
was on the development of “eCoaches,” a program that developed informatics solutions
to help individuals implement “healthy” lifestyle changes. Her team analyzed documents
and conducted focus groups and interviews with individuals to understand how the mobile
applications became “imbued with certain norms and values, such as the moral imperative
to be responsible for one's health.”[21] The analysis showed that the institutional documentation of the program framed stress,
lack of sleep, and lack of exercise as “problems” that put the health system (and
by extension, the society) at risk. At the individual level, participants discussed
risks to the individual's privacy, proposing ways to “turn off” eCoach features that
are too invasive. The analysis of risk discourses at multiple levels underlines the
possibility that consumer health informatics tools developed to encourage adherence
to healthy lifestyles may in fact “deepen existing social divides.”
The implications of Adamsian discourse analysis for clinical informatics are several:
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We are compelled to clarify and document the meanings of new categories of data, their
labels, and the trajectory of their existence. An example of special importance is
the increasing use of geospatial data in health care analysis, with the potential
of incorporating the information into electronic health records (EHRs) as “social
determinants.”
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We should document the social implications when we are presented with new taxonomies
to be incorporated into clinical informatics design. For example, the inclusion of
country of origin and travel history in the EHR, which supposedly imparts value for
tracking potential exposures to severe acute respiratory syndrome and other diseases,
may affect the way individuals are treated and whether they experience discrimination
while obtaining care.
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The discipline should regularly reflect on the values that are being inscribed into
technology that routinizes the work of millions of health care workers.
Dr. Adams' innovative and impactful work was in bloom at the time of her passing at
a very young age. Her students and other professional colleagues are left to expand
her work in an attempt to ensure better health care and health for all. She provided
an excellent foundation for doing so.
