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The Role of Information Technology in Patient Engagement
Sima Marzban1, Paul Meade2,Marziye Najafi3, Hossein Zare4
Abstract
Patient Engagement (PE) promotes the patient's
interaction with and contribution to all aspects of
care, where patients play an active and informed role
in improving healthcare systems in addition to
individual care decisions, enhancing health outcomes,
and avoiding extra costs. Understanding the PE
concept is essential for e-health professionals to
adopt solutions to interacting intensely with patients.
To identify the gaps in stakeholders'— particularly
e-health people—worldviews, we conducted a
scoping review of the evidence that has been
published between 2010-2020. In this review, we
included published PE articles that focused on the
role of information technology. Our findings showed
that stakeholders' solutions have focused primarily on
clinical records, communications, education,
adherence, and recently, artificial intelligence to
optimize the services. The authors focused their
attention on the care's aspects regarding cognitive,
emotional, economic, behavioral, lifestyle, or
wellness dimensions.
Reviewed evidence rarely emphasizes the patients'
role in changing organizational policies, care
redesign, or healthcare service improvements. We
propose a model to develop PE by multi-stakeholder
efforts and interrelated capabilities by coordinating
diverse engagement tactics into a seamless
orchestration, using versatile Information Technology
(IT).
Keywords: Patient Engagement, Information
Technology, Insights, Experience, E-Health,
Activation, Providers, Payors
1. Introduction
Patient engagement (PE) is a growing scheme
around the world. Information Technology (IT)
solutions provide platforms to engage the
patients with their care process, to significantly
adapt to situations (such as the current
pandemic) in which patients are less likely to
visit clinical providers in person. The Medical
Institute (IOM) considers access to appropriate
information and clinical knowledge as a source
of control over individuals' health-related
decisions (1). Furthermore, engaging patients as
partners in shared decisions promotes better
quality and lower cost, return on investment,
and improved outcome measures. Evidently,
cost containment, quality improvement,
customer retainment, and adherence can
explain stakeholders' main drivers for enhancing
the patients' role. However, improved health
outcomes as the
highest level of impact provides the greatest
benefits to patients and communities.
Electronic health interventions are known to
have great potential to enhance patients’
engagement with passive or active involvement
strategies.
Providing access to clinical records, text, audio,
or video sources for patient education is an
example of passive engagement. Examples of
active engagement include mutual relationships
like live video communications, virtual patient
family advocacies, asking about future care or
design preferences, and patient contributions to
decisions. Using the capacity of IT, our study
highlights patient engagement approaches by
key actors, developing a multi-stakeholders'
conceptual framework to optimize patient
engagement, and ultimately patient outcomes.
2. Methods
1. S. Marzban, MD, MPH, PhD,Adjunct Instructor, University of North Carolina, Gillings School of Global Public Health, SPH Acad
Affairs, NC, Simasi@live.unc.edu, President, Key Patient Insights, simam@keypatientinsights.com. (Corresponding Author)
2. P. Meade, MS, Adjunct Professor and Lecturer, University of North Carolina, Gillings School of Global Public Health, SPH Acad
Affairs, NC, Pmeade@email.unc.edu, Vice president, Key patient insights, pmeade@keypatientinsights.com
3. M. Najafi , PhD Student in Health Services Management, Department of Health Economics and Management, School of Public
Health, Tehran University of Medical Sciences, Tehran, Iran. m.najafi.b@gmail.com
4. H. Zare, MS, PhD. Faculty, Johns Hopkins Bloomberg School of Public Health, Department of Health Policy and Management,
hzare1@jhu.edu and Adjunct Associate Prof. Department of Global Health Administration, University of Maryland University
Global Campus (UMGC), MD. Hossein.Zare@faculty.umuc.edu.
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This paper consists of two main sections: a
scoping review of available evidence and a
multi-actor model fed by our review results.
2.1 Scoping review
This scoping review was conducted in 2020 to
identify the gaps in the evidence that are
important to healthcare professionals and
policymakers. The review provides a picture of
the current state of PE approaches accessible by
published evidence. Several primary and
secondary studies were available to disclose PE
understanding through the lens of one of the
stakeholders, but a few studies revealed a
comparative or collective view of various
stakeholders' perspectives on the usage of IT.
We conducted the review through Arksey and
O'Malley's original framework (2,3), which
has 5 steps, including the following:
2.1.1 Research Question: In step one, we
identified the research question: How do
stakeholders approach PE?
2.1.2 Identifying related studies: In the second
step, we identified related studies. The search
was performed in PubMed and Google Scholar
databases using the keywords: patient
engagement, patient insight, patient
involvement, and patient activation.
2.1.3 Selecting articles: The research team
included review studies that focused on the
above-mentioned keywords from two or more
stakeholders' perspectives. Inclusion criteria
were: (1) studies written in English, and (2)
secondary studies that reviewed PE approaches
by two or more stakeholders. The following
criteria were used to exclude review studies:
non-English language, did not address the
study's question, and duplicate studies.
From 4,512 published documents, 191
presented thoughts and views on PE related to a
primary intervention to engage/activate
patients; 22 had a multi-stakeholder
intervention, and only 17 were secondary
reviews with more than a single-stakeholder
perspective on the patients' role. After three
authors reviewed the included articles,
seventeen articles were selected for this study.
Disagreements were resolved through
discussion between the original review authors
and in group discussions among authors. From a
careful consideration of the selected articles, 17
quality articles were selected for this study.
While writing this paper, we looked at the
references used by the 17 selected articles
when required. The screening process and
search results are shown in Figure 1.
2.1.4 Tabulating findings: In the fourth step,
data related to understanding and interpreting
PE was extracted and tabulated based on the
type of stakeholders involved.
2.1.5 Reporting findings: The selected
documents were categorized according to the
definitions, approaches, and focus of
stakeholders of PE and examples of engaging
methods.
Figure 1. Flowchart of the study selection
process
2.2 Multi-Actor Model
We developed a new conceptual model that
provided a comprehensive view of PE
interactions.
3. Findings
PE refers to the actions that producer, provider,
and patient need to obtain the greatest benefit
from the healthcare products and services
through the patients’ informed involvement.
The perspectives of diverse healthcare players
that looked into PE were different—a range of
benefits from saved costs to averted
complications or death. Also, involvement
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strategies— defined as ranging from entering
data in a form by the patient to consultations
for designing the operation room considering
aspects are important to patients.
Understanding PE from different dimensions of
various stakeholder groups plays a crucial role in
optimizing the implementation of PE.
3.1 Scoping review findings
Selected articles showed that PE approaches
and interventions could be classified into four
areas of interest: E-health solution developers,
Insurers (payors), Clinical Providers, and Biotech
companies.
3.1.1 E-Health solution developers
E-health solutions create a digital
provider-patient relationship connecting clinical
team members, mostly physicians, to patients.
Providing access to clinical teams and medical
data facilitates communication for real-time
decisions. Moreover, software applications and
IT platforms allow clinical teams to deliver
cooperative and efficient services, impact
positively on patient behavior, prevent adverse
incidents, and improve health outcomes (1, 4).
Studies show that engaging patients who had
physical and mental health problems reported
better emotional, physical, and social outcomes
(5). It is essential to consider what are patient
expectations, experiences, and operational
preferences from eHealth interventions and the
IT design. Otherwise, while providers work
strictly with those boards, patients ignore the
utilization and its ultimate advantages (6). A
competitive landscape of patient engagement
among digital market navigators resulted in
beneficial groups' simultaneous efforts to add a
type of PE digital tool to their services. Patients
being prescribed a new drug may be asked to
enroll in their health care provider's (HCP's)
hospital or clinic electronic portal at the same
time in the life science company's patient
engagement program, or in a wellness
application from their health insurance
company. The situation leads to a potentially
overwhelming and conflicting patient
experience despite the best intentions of all
stakeholders. Though potentially complex, there
is the opportunity to coordinate these diverse
engagement tactics into a seamless
orchestration of touchpoints with the unified
purpose of supporting optimal health outcomes
(7).
3.1.1.1 Methods for engaging:
Investing in digital patient interaction tools
warrants a return on investment in the health
industries (8). E-health interventions focused
mainly on visit timing, clinical records, and
patient education (9). A variety of innovative
models also engage inpatients, including before
hospitalization navigators, visit and consultation
administrators, video patient educators, billing
transparency processors, and during
hospitalization audiovisual options for medical
purposes (such as pain management through
distractions). Those initiatives can provide
patients and clinical teams with advanced
support mechanisms rather than general health
information and one-way communications (1).
As long as providers recognize the need and
arrange for mutual communications and
feedback, IT can actively engage patients
with the clinical process (10). Transforming care
delivery to the optimal extent of expected
patient engagement will be achievable if IT
professionals consider the influencing factors
related to crucial stakeholders such as patients,
providers, payors, and the biotech industry.
3.1.2 Insurers (payors)
Payors see PE as an interaction policy with
patients and families who suffer chronic and
costly medical conditions to maximize the value
of paid expenses, so-called value-based care,
and payments. In fact, value-based payment can
adjust the risk-sharing between stakeholders,
the strategy that significantly affects how
organizations develop physicians' networks,
invest in service lines, and plan for clinical
locations and treatment programs (11).
Insurance organizations encourage stakeholders
to consider the quality and cost of services
provided. To this end, paying targets for value
should improve the health system's
performance, which is certainly not possible
with traditional payment methods (12).
Physicians' long-term efforts have proven to
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provide quality and valuable services following
the financial results (13).
3.1.2.1 Methods to engage:
United Healthcare, a large national payor,
emphasizes providing health information to
patients to reduce the information gap between
patients and providers. This includes sharing
detailed information about selecting providers,
supporting treatment decisions, and planning
diagnostic tests and treatments. There is also a
"payback" program to Accountable Care
Organizations (ACOs) that provide more quality
and low costs through preventive health
programs that offer positive financial incentives
by reducing premiums to employees with
healthy habits (8). The Hospital Consumer
Assessment of Healthcare Providers and
Systems (HCAHPS) is a survey used as a basis for
the patient's experience of care in a value-based
purchasing program by insurers. Hospitals
required report data for this plan to receive
their full inpatient prospective payment (IPPS)
annual payment update (APU). They may be
penalized if they have not met the required
quality (14).
3.1.3 Clinical Providers
For a convincing and meaningful interaction
with patients, providers must consider
consumer relationship language,
communication timing, smooth flow of
information, and clear responsibilities.
Evaluation of patient engagement by
satisfaction studies and outcome measures will
also help providers enhance the well-engaged
patients' retainment in their network; however,
engaged patients are different from satisfied
patients (15). PE should be operated and
acknowledged at three levels:
macro-level (system), meso (institutional), and
micro-level (medical approach). Micro-level
such as educating patients for self-assessment
purposes is usually considered as a PE
achievement while patients are often not
assigned to be engaged in macro-level like the
redesign of an organizational policy or
procedure (9). The level of patient interaction
seems to affect the results of efforts that are
dedicated to patients and family engagement
(16). To this end, having a strong culture of
interaction between patients, providers, and
healthcare professionals is required by six
principles of partnership: learning,
empowerment, transparency, responsiveness,
and respect (17).
3.1.3.1. Methods for engaging: A range of
mechanisms have been applied by providers
based mostly on information provision, patient
activation, and patient-provider collaborations
(18). They could be classified due to the degree
of participation: low-level participation such as
one-way consulting advice, and high-level
interactions such as joint design (co-design) or
partnership strategies (16). Co-design as the
most mature type of engagement optimizes
providers’ insights on actual patient-side data
and can help providers understand PE through
moving from insights to achievable impacts (See
Figure 2) (19).
3.1.4 Biotech companies
Historically, the pharmaceutical industry has
focused on developing science and medicine to
prevent or treat diseases. Patient-centric
involvement means involving the patient in the
drug development journey from discovery to
the marketplace. Leading health-care
companies have involved the patients and
families, while some large pharmaceutical
enterprises have lagged behind and are still
focused on traditional markets (20).
Pharmaceutical companies are inherently
seeking to make a remarkable profit, which
should be noted that the acquisition and use of
this profit must be consistent with the claim of
patient centrality. There are several challenges
for pharmaceutical companies in the PE area:
doubts about commercial success, lack of
standard process, insufficient sharing of
pharmaceutical industry experiences in patient
engagement, lack of research on patient
centrality, overuse of available information
sources (such as physicians and Medical Science
Liaisons (MSL)), the notion that direct industry
interaction with patients is inappropriate or
unauthorized, and conflicts of interest (the idea
that the industry should not engage with
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patients). Most of these challenges are solved
by sharing experiences and learning (21).
Figure 2. Integrated Patient-Side Data Capturing
Diagram, Insights to Impacts Package. From
Key Patient Insights (KPI) website, by Marzban,
2020, www.keypatientinsights.com
Engaging steps: Here are the main steps to
engage biopharma companies with patients:
●Changing the mindset - turning the patient
focus into a vision throughout the company
leaders and staff.
●Driving cooperation- patients and families
and other stakeholders’ participation to
examine patient-centered solutions.
●Learning and sharing - Challenging the
situation, recording experiences, learning,
and sharing lessons (21).
3.2 The multi-stakeholder PE model: Role of
Information Technology
By combining stakeholders' perspectives, we
developed a conceptual framework (Figure 3)
that is particularly advisable to apply PE by
means of various actors' determination: Data
and Technology partners, Medical Providers and
Delivery roles (physicians and nurses),
Healthcare Organization (System),
Patients/Families, and Payor Organizations.
Figure 3. Conceptual Framework to Engage
Patients Using Capacity of Information
Technology
3.2.1 Data and Information Technology
Partners
ITand data play essential roles in engaging
patients with the services and clinical teams. IT
platforms should provide user-friendly,
interactive, on-time, and easily understandable
information for diverse users. Solutions are
more competitive that meet the needs for
information in real-time, not only about the
disease but also about the resources of social
support and self-care. Addressing providers'
need to transform, IT is evolving to make the
best of artificial intelligence, machine learning,
and data analytics. However, developing the
capacity to inform providers and learn from
patient-driven insights seems to be a profound
level of achievement. The technology puzzle's
challenging part is how market players navigate
the patient engagement to the stakeholders'
priorities, including patients and physicians who
are most likely to develop their humanized
clinical inter-actions. Another crucial question is
that: how patients should encounter and
interact with various changing applications and
software over time and insurance coverage
changes (particularly in the US) to play an active
role in their health services. Is it a time to
provide an integrative and sustainable digital
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environment for the patient's lifelong access? If
yes, how will payors and providers customize
their connection to the constant patients' digital
rooms through inter-operable technologies
when insurance or provider plans switch? The
service model will change for the better and add
to the efficiency that already exists through
consideration of how the different actors look at
PE and the recently emerged technologies.
While solution developers pay attention to
providers' expectations and preferences, it is
crucial to meet the patients' priorities. For
instance, the billing process is vital to providers
and payors, but financial support is essential for
the patients. Consumption of a prescription
shows adherence and sustained revenues for
pharmaceuticals, but perceived quality of life
changes during a drug or device usage are
important to patients. IT solutions might keep
an eye open to how patients interact with the
software or apps and how their concerns, such
as the need for customized information and
financial or emotional support, are met.
3.2.2 Medical Providers
Individual clinical roles are influenced by
personal approaches, inherent characters, and
internalized behaviors. Wellness-oriented
attitudes by clinicians and clinical team
members often establish promotive health
discussions. The provider's mutual
communicative style also develops a shared
discussion process that is more appreciative
than assertive orders to patient values.
Adequate knowledge and practice facilitate
sharing the right information with
understandable language and managing the
discussion process with a two-way, calm, and
kind context. There are time-related, cultural,
non-verbal, audio, and visual considerations to
help patients remain actively involved and
responsible for their health efforts and
outcomes. Providing adequate incentives and
inputs for decisions, using audio and visual
enabler aids may support patients to actively
engage with shared decisions.
3.2.3 Healthcare Organization (System)
Healthcare Organizationsaffect both patients
and medical providers directly and indirectly.
They ought to give PE a strategic priority as a
dynamic and evolutionary process requiring
multi-stakeholder interactions aligned with the
patients' preferences, activation,
empowerment, and optimal use of the
engagement. Providers emphasize PE values
and patient-centered leadership style in their
organizations to steer subordinate systems to
process goals such as efficient time usage, fewer
errors, better design/culture, shared
decision-making, adherence, and compliance.
At the same time, they secure target outcomes
such as better health status, disease relief,
loyalty, and retention. By considering
community-based care and social determinants
of health (SDH), providers can transform how
they interact with their patients. Top leadership
commitment to a patient-centered culture and
investments in solutions to maximize end-users'
engagement might be reflected in written
organizational policies, rules, measures,
structural roles, evaluations, and continuous
training and improvements.
3.2.4 Patients
Patients are at the core of the model—a fully
engaged patient stems from a series of personal
traits and interpersonal behaviors. A patient
who prefers to take an active role in the clinical
team and intentionally builds knowledge and
confidence would be a better decision partner
than a passive patient.Heard, valued, and
informed patients take accountability for the
healing process and see their health outcomes
as within their control. Engaged patients seek
information and resources to change their
behavior and do not hesitate to express the
need for assistance or support. Empowered
patients continuously ask for solutions when
faced with stress/pain points and demand
transparent billing/pricing information. The
most mature type of engagement occurs when
the patients participate in improvements and
contribute to the care redesign.
3.2.5 Payor organizations
If payors understand the real value and meaning
of engagement, they may see PE as a business
imperative.Some experts criticize current
value-based payment because of
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inconsistencies with evidence-based medicine,
transparent payment policies, and as misleading
about spending less without changing practice
path and harming patients. Capturing
patient-side data such as patient experiences,
patient journey maps, and wellness indexes
generate value for payors by saving unnecessary
services and wasteful expenditures. Gathering
and analyzing customer feedback, if done
through payors, producers, or providers, is
usually tainted with internal bias; however, it is
always possible to work with trusted vendors
who indirectly communicate with users to
provide transparent insights. The consistency of
payment policies with evidence-driven
treatment saves payors' money because of
fewer errors, readmissions, and follow-up visits.
In contrast, when physicians are concerned
about being compliant with insurance protocols
that are not scientifically proven, prolonged
treatment complications and costs would
burden the payor organization.
4. Conclusions
Based on the review, existing PE approaches are
heterogenous, patchy, and unpolished. PE
strategies are also not always consistent with
patients' values and benefits as expected from
the term, but PE often watches over the desired
advantages of digital technologies, provider
individuals, healthcare organizations, and most
of all financial organizations to optimize trust,
consumption, and adherence. Even patients'
organizations and groups face gaps in their basic
presumptions of PE. In the absence of powerful
patient associations, there is confusion about
whether PE means to act like a better consumer
and care-receiver or to excel in the user roles as
counselors and co-designers for the healthcare
products and services for which they pay high
costs. PE is a dynamic and evolutionary process
that requires multi-stakeholder interactions.
The synergy leads to the healthcare processes
and healthcare outcome improvements. The
proposed systems-based model enables
healthcare professionals to systematically lead
and develop PE activities within and exterior to
their organizations. Although the proposed
systems-based model is not expected to employ
a unified PE framework, it will help all stage
players be aware of other influencers' impact on
what happens to patients' contributions.
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