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Perspective
Transforming consumer health informatics through
a patient work framework: connecting patients
to context
Rupa S Valdez,1 Richard J Holden,2 Laurie L Novak,3 Tiffany C Veinot4
1
Department of Public Health
Sciences, University of Virginia,
Charlottesville, Virginia, USA
2
Departments of Medicine,
Biomedical Informatics,
Vanderbilt University, Nashville,
Tennessee, USA
3
Department of Biomedical
Informatics, Vanderbilt
University, Nashville,
Tennessee, USA
4
School of Information and
School of Public Health,
Department of Health Behavior
and Health Education, Ann
Arbor, MI, USA
Correspondence to Dr Rupa
S Valdez, Department of Public
Health Sciences, University of
Virginia, PO Box 800717,
Hospital West Complex,
Charlottesville, VA 22908,
USA; rsv9d@virginia.edu
Received 24 March 2014
Revised 30 May 2014
Accepted 1 June 2014
ABSTRACT
Designing patient-centered consumer health
informatics (CHI) applications requires understanding
and creating alignment with patients’ and their family
members’ health-related activities, referred to here as
‘patient work’. A patient work approach to CHI draws
on medical social science and human factors
engineering models and simultaneously attends to
patients, their family members, activities, and context.
A patient work approach extends existing approaches
to CHI design that are responsive to patients’
biomedical realities and personal skills and behaviors.
It focuses on the embeddedness of patients’ health
management in larger processes and contexts and
prioritizes patients’ perspectives on illness
management. Future research is required to advance
(1) theories of patient work, (2) methods for assessing
patient work, and (3) techniques for translating
knowledge of patient work into CHI application
design. Advancing a patient work approach within CHI
is integral to developing and deploying consumerfacing technologies that are integrated with patients’
everyday lives.
INTRODUCTION
To cite: Valdez RS,
Holden RJ, Novak LL, et al.
J Am Med Inform Assoc
Published Online First:
[please include Day Month
Year] doi:10.1136/amiajnl2014-002826
As healthcare shifts to home and community settings,1 2 patients are increasingly called to engage
in self-care and self-management. Consumer health
informatics (CHI) applications such as remote
monitoring systems, personal health records, decision support systems, and online health communities are being created to support patients with such
expanded responsibilities.3 4 However, previous
studies have documented mixed effectiveness, efﬁciency, and patient-centeredness of these tools. 5–9
Furthermore, actual use of CHI applications is
often suboptimal, particularly over time.10 Thus,
while CHI applications have demonstrated potential, the need to augment existing methods of
design and implementation is clear. 11 12 Jimison
et al13 showed that more widespread adoption may
be aided by design approaches that facilitate integration of CHI applications into patients’ and
family members’ daily routines. Building on this
insight, we argue that a ‘patient work’ conceptual
framework, described below, holds considerable
promise for achieving such daily routine integration
through simultaneous attention to patient, family
members, activity, and context. The analytical lens
offered by a patient work framework offers one
potential strategy for promoting wider use and
greater impact of CHI applications.
Valdez RS, et al. J Am Med Inform Assoc 2014;0:1–7. doi:10.1136/amiajnl-2014-002826
DESIGN TO ALIGN: AN IMPERATIVE FOR
CLINICAL AND CONSUMER HEALTH
INFORMATICS
It has been widely asserted that clinical information
systems need to better align with healthcare work
activity.14–16 Consider the case of computerized
provider order entry (CPOE). In 2005, studies of
CPOE-related errors17 and harm18 offered cautionary tales about the risks of designing systems
that support work-as-imagined rather than
Box 1 Key tenets of the patient work
conceptual framework
▸ Patients’ and their family members’
health-related activities constitute a type of
work called ‘patient work’, deﬁned as
“exertion of effort and investment of time on
the part of patients or family members to
produce or accomplish something” (Strauss,22
pp.64–65).
▸ Patient work is similar, though not identical
to, the work of healthcare professionals (eg,
clinicians) in that both involve agency, context,
and activity.
▸ Patients as well as others, including family
and community members, have agency in that
they play active roles in the performance of
work, individually or collaboratively. Their
agency indicates some opportunity to actively
shape their own health-related outcomes.
Different agents have different patient work
roles, responsibilities, relationships, and
perspectives on their work.
▸ Patient work occurs within a context (or ‘work
system’) that comprises interacting structural
components such as task, technology,
environment, and community factors. These
factors act as constraints, facilitators, or both,
with respect to patient work activity.
▸ Patient work activity can be decomposed into
multiple lines of work such as ‘illness work’,
‘everyday life work’, or ‘biographical work’. All
lines of work are supported by ‘articulation’
(or coordination) work. Patient activities can
involve ‘cognitive’, ‘physical’, or
‘social-behavioral’ processes and can be
‘visible’—that is, acknowledged, recognized,
and/or valued—or ‘invisible’ and taken for
granted by others and thus implicitly valued
less.
1
Perspective
Figure 1 Comparison of general insights and consumer health informatics (CHI) design opportunities across biomedical, personal skills and
behavior, and patient work lenses.
work-as-performed.15 A decade later, scholars and designers recognize that “successful implementation of CPOE requires close
attention to the local details of information exchange and workﬂow processes” (Weir et al,19 p.65). This consensus is evident in
national guidelines recommending that “design begins by understanding who the users are, their needs, typical and atypical
workﬂows, and the context in which the system will be used”
(Schumacher and Lowry,20 p.25). This framework may be called
the ‘Design to Align’ imperative. We extend previous dialogue
regarding this imperative, asserting the value of an expanded
focus on the work of patients and their family members within
CHI.
this conceptualization, scholars in human factors engineering21
and social sciences22 have expanded the notion of work to
include unpaid activity. A strength of both disciplines’
approaches is that they connect work to context, including
tasks, technologies, environments, and community factors.
Sociological approaches also provide insight into the subjective
experience of illness. As patients’ responsibilities increase in
volume and complexity, assessing and designing CHI applications from a patient work framework (box 1) informed by these
ﬁelds offers rich design opportunities.
Human factors engineering: the work system perspective
PATIENT WORK PERSPECTIVE AND FRAMEWORKS
Though not always recognized, patients and their family
members may allocate signiﬁcant effort toward their treatment
and care—a phenomenon we call ‘work’. In accordance with
2
From the human factors engineering perspective, work structures, processes (activities), and outcomes are intimately
related.23–25 Work activity is shaped by the context within
which it is performed; together, activity and context create a
Valdez RS, et al. J Am Med Inform Assoc 2014;0:1–7. doi:10.1136/amiajnl-2014-002826
Perspective
Figure 2 Case comparison of insights and consumer health informatics (CHI) design opportunities across biomedical, personal skills and behavior,
and patient work lenses.
work system consisting of social, technical, and environmental
components.26
Two work system models relate directly to work performed
by patients: Systems Engineering Initiative for Patient Safety
2.024 and the Human Factors of Health Care in the Home.27
These models can be synthesized to identity ﬁve key components of the patient work system:
▸ Person(s): individuals or groups involved. Person-level factors
include demographics, health status, and capabilities relevant
to work performance, such as expertise.
▸ Tasks: actions in which the person(s) is engaged. Task-level
characteristics of interest include difﬁculty, complexity,
timing, familiarity, and variety.
▸ Tools/technologies: artifacts used by the person(s) to perform
the tasks. Tool/technology-level factors include usability,
portability, accessibility, size, and security.
Valdez RS, et al. J Am Med Inform Assoc 2014;0:1–7. doi:10.1136/amiajnl-2014-002826
▸ Physical environment: settings where health management
occurs. Physical environment-level factors include temperature, lighting, clutter, ﬂoor plan, safety, aspects of the built
environment in a neighborhood, and electrical and technological infrastructure.
▸ Social-organizational environment: communal contexts in
which health management occurs. Social-organizational
environment-level factors include family dynamics, community organizations, and cultural traditions.
Work system components interact, inﬂuencing how patients
and families perform work.28 A good ﬁt between work system
components promotes favorable outcomes of the work activity,
but poor ﬁt introduces breakdowns in safety, efﬁciency, and
effectiveness. Deployment of new work system components
such as CHI applications can be problematic if not aligned with
an existing work system. Because CHI application use is
3
Perspective
Figure 3 Integration of the patient work framework within the user-centered design process.47
typically discretionary, a poor ﬁt may also stimulate rejection or
abandonment of existing systems.12 Thus, the human factors
engineering perspective underscores the need to systematically
understand, and design for alignment with, each system
element.
Social sciences: the chronic illness trajectory
Corbin and Strauss’s framework29 for patient work is grounded
in Strauss’s earlier research30 on work practices that drew on
the sociology of Eliot Friedson31 to explicate the concept of a
project. Projects, potentially very diverse, all have a goal, follow
a temporal ﬂow, involve both tasks and assembly/maintenance
of resources, and terminate. Examples from everyday life might
include working toward a promotion or educating a child.
Strauss built on the concept, shifting the focus from the ‘division of labor’ among classes of workers to the nature of
work-as-performed and experienced, including tasks, actors,
and the relationships between them and characterizing relations
in terms of accountabilities, temporal dependencies, articulation
of tasks and people, and articulation of multiple ‘lines of work’
comprising bundles of projects. Researchers studying these phenomena must understand the work’s context, for example
home, school, or occupational setting.
Among patients, the work of managing chronic illness is referred
to as the Chronic Illness Trajectory,29 which includes several
dynamic ‘lines of work’, including ‘medical’ tasks, referred to as
‘illness work’, and the continuation of household and occupational
management, or ‘everyday life work’. A further line of work, ‘biographical work’, involves illness-related adjustments to occupation
and identity. These lines of work interweave along the chronic
illness trajectory. Additionally, patients (and others) perform articulation work, coordinating efforts, resources, and projects to facilitate
other forms of work. For patients, articulation work responds to
internal contingencies arising from illness care and external ones
4
48
related to acquisition, allocation, and use of resources.32 Such contingencies differ according to context; for example, new forms of
patient work may arise in efforts to accomplish treatment adherence
in disadvantaged neighborhoods.33 Such work may be ‘visible or
invisible’ in that it may or may not be ofﬁcially acknowledged or
informally recognized by healthcare providers,32 who take it for
granted as ‘compliance’ or ‘cooperation’.32 34
COMPARING PATIENT WORK WITH EXISTING CHI
APPLICATION DESIGN PERSPECTIVES
CHI applications have traditionally been designed to accommodate patients’ biomedical realities and, more recently, personal
skills and behavior. A patient work lens extends those focuses by
attending to the embeddedness of patients’ health management
in larger processes and contexts and prioritizing patients’ perspectives on illness management. An individual may have high
health literacy, motivation, and readiness to change, but minimally engage with a behavior change application because her community emphasizes the personal nature of health, and she shares
her home and technology resources with ﬁve family members
whom she does not want to see her as ‘sick’. She may also be
reluctant to walk to a library to use a computer because her
neighborhood is unsafe and her library’s technology resources
are in high trafﬁc areas, reducing privacy.
Figure 1 compares the types of factors considered under (a)
biomedical, (b) personal skills and behavior, and (c) patient
work lenses, with the last revealing the type of context factors
(eg, privacy, neighborhood safety) and work activities (eg, identity management) that created signiﬁcant CHI application use
barriers in the above example. Importantly, ﬁgure 1 compares
design insights offered by a patient work framework versus the
other two analytical lenses. Figure 2 provides detailed examples
of insights into a ﬁctional patient, Brenda, and associated design
opportunities emerging from each of the three perspectives. As
Valdez RS, et al. J Am Med Inform Assoc 2014;0:1–7. doi:10.1136/amiajnl-2014-002826
Perspective
illustrated in ﬁgures 1 and 2, the patient work framework recognizes the need for additional types of functionality (eg, contextsensitive alerts, health information sharing with social network
members), new content (eg, information tailoring based on geographic location, expanded data sources regarding built environments and local resources) and considerations for interaction
design, such as privacy settings (eg, option to hide personal
information on user interface).
We acknowledge that use of the patient work framework
introduces complexity into CHI application design processes.
To deal with the complexity, designers should follow usercentered design procedures35 as shown in ﬁgure 3. Figure 3
describes how these standard procedures can be adapted to CHI
application design consistent with a patient work framework.
FUTURE DIRECTIONS FOR CHI APPLICATION RESEARCH
AND DESIGN INFORMED BY THE PATIENT WORK PERSPECTIVE
Applying the patient work perspective may better align CHI
applications with the full range of activities and contexts in
which patients and their family members are embedded.
However, the perspective articulated here is only an initial step
toward full realization of a patient work approach to CHI. In
particular, there is a signiﬁcant need to advance knowledge
regarding (1) theories of patient work, (2) methods for assessing
patient work, and (3) techniques for translating knowledge of
patient work into CHI application design. Box 2 presents examples of salient research questions in all three domains.
The potential value of health information technology is augmented through judicious application of theory.36 As outlined in
box 2, theories of patient work must expand to characterize the
composition of, and relationships between, patient work system
elements and activities. Determining salient features of patient
work in ﬁner detail will facilitate development of prescriptive
design considerations such as those recently published by the
National Academies of Science.37 In addition to efforts focused
on decomposition, simultaneous efforts are needed within CHI
to merge theoretical contributions regarding patient work from
the human factors engineering and medical social science disciplines to form a uniﬁed basis for advancing patient work theory
as relevant to CHI application design and implementation. It is
also necessary to determine how existing theoretical models
used for CHI application design and evaluation, such as the
Box 2 Future consumer health informatics (CHI) application research directions informed by the patient work perspective
Theory
▸ What are the subcomponents and (sub-subcomponents) of patient work systems?
▸ How can patient work activities be systematically identiﬁed and characterized?
▸ What interactions exist between and among patient work activities and patient work system components?
▸ What interactions exist among patient work system components and the medical care work system?
▸ Which patient work activities and system components are generalizable, and which are idiosyncratic across conditions,
demographics, and individuals?
▸ What would be the characteristics of a uniﬁed conceptual framework that merges the concepts of patient work activities and the
patient work system?
▸ How are the various technological components of patient work systems best conceptualized, including medical interventions
(eg, medications, self-care instructions), medical devices, and information technology?
▸ How can the patient work perspective be applied to CHI application evaluation, and how can we integrate this perspective with
extant models of technology acceptance, adoption, and use that were developed in institutional settings?
▸ How do we formally integrate other actors such as family members, healthcare providers, and community members into the patient
work framework?
▸ How do we take the diverse community contexts (eg, cultural context, socioeconomic context, rural/urban context) of patient work
into account?
Methods
▸ What work evaluation methods are best suited to understanding the physical and social contexts in which patient work is
performed?
▸ How do we adapt standard clinical informatics methods such as workﬂow analysis to understanding patient work?
▸ What work evaluation methods best balance the need to employ approaches that are participatory, cost efﬁcient, and representative?
▸ How do we ensure the representation of marginalized populations in our understanding of patient work?
▸ How can we best engage patients and their families in collecting data about their work activities and work systems?
▸ What evaluation measures are needed to address important meso-level issues such as work system functioning and family/
community-level outcomes?
Translation
▸ How do we systematically, efﬁciently, and effectively translate knowledge about patients’ work activities and work systems into
guidance for the design of CHI applications?
▸ How do we map speciﬁc patient work activities and patient work systems to ‘feature sets’ for CHI applications?
▸ How do we create designs that are responsive to the range of work activities and work systems exhibited across patients?
▸ What role can community-based, participatory research play in translating our understandings of patient work into design
recommendations?
▸ How do we integrate insight from social science and human factors models of patient work into the CHI application design process?
▸ How can we best represent patients’ illness-related experiences and perspectives as concrete design choices?
▸ Does a patient work design perspective result in improved CHI application acceptance and usage as compared to traditional
approaches?
Valdez RS, et al. J Am Med Inform Assoc 2014;0:1–7. doi:10.1136/amiajnl-2014-002826
5
Perspective
Theory of Planned Behavior, the Transtheoretical Model, and
the Technology Acceptance Model may be augmented to explicitly account for the larger context of use as speciﬁed by the
patient work perspective. Finally, there is a need for theoretical
advancement in targeting and tailoring CHI applications to
populations and individuals, respectively.38 See the uppermost
panel in box 2 for additional questions that could expand the
theoretical basis for patient work-focused design.
Methodological advances are also required to ensure timely
acquisition of a deep, systematic understanding of patient work.
The middle panel of box 2 contains questions regarding how
patient work is studied. Existing ﬁeld-based methods such as interviews33 39 and observations yield rich understandings but are time
and labor intensive. Newer techniques combining human factors
engineering conceptualizations of patient work with approaches
from ﬁelds such as social network analysis40 and facilities layout41
hold promise. Other encouraging efforts have focused on using
patient-generated data,42 targeted use cases,11 and communitybased participatory approaches.43 Continuing these lines of
inquiry is necessary to ensure that CHI application developers
readily study and understand patient work.
A ﬁnal research area focuses on translating knowledge of
patients’ work activities and systems into design guidance.
Conventional approaches for communicating user needs and
preferences to designers, including personas44 45 and scenarios,46 rely on focused narrative portrayals of users’ characteristics and goals. However, the wealth of knowledge generated
from the study of patient work makes it challenging to generate
such concise descriptions. New initiatives are required to determine how to adapt or complement existing design methods to
distill the wealth of information gained through a patient work
lens into succinct, actionable design guidelines. Empirical study
of the impact of a patient work design framework on user
acceptance and use is also required. Detailed questions related
to this area appear in the bottom panel of box 2.
CONCLUSION
As a locus of healthcare shifts to home and community-based
settings, CHI applications hold promise for supporting patients’
self-care and self-management responsibilities. A patient work
framework augments existing approaches to CHI design
through explicit responsiveness to the contexts of patients’ use,
and by taking patients’ activities and perspectives into full
account. Patient work approaches can help develop and deploy
consumer-facing technologies that better leverage their full
potential.
Funding RJH is supported by the National Institute on Aging (K01AG044439) and
LLN is supported by the National Library of Medicine (5 R00 LM010038-04) of the
National Institutes of Health (NIH). The content is solely the responsibility of the
authors and does not necessarily represent the ofﬁcial views of the NIH. TCV is
supported by the Institute of Museum and Library Services (LG-52-11-0212-11). Any
views, ﬁndings, conclusions, or recommendations expressed in this publication do
not necessarily represent those of the Institute of Museum and Library Services.
Contributors The authors collaboratively conceptualized this piece. RSV drafted the
paper except for the ‘Social sciences: the chronic illness trajectory’ and ‘Design to
align’ sections and drafted box 2. RJH drafted the ‘Design to align’ section, box 1,
and ﬁgures 1–3. LLN and TCV drafted the ‘Social sciences: the chronic illness
trajectory’ section. All authors contributed to reﬁning all sections and critically
editing the paper.
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Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
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