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Empowering Children and Families With Information Technology
Donna M. D'Alessandro, MD;
Nienke P. Dosa, MD
Arch Pediatr Adolesc Med. 2001;155:1131-1136.
ABSTRACT
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Patient empowerment is the enhanced ability of patients to actively
understand and influence their health status. Information is the key to patient
empowerment. Without information, children and families cannot engage in meaningful
discussions or make thoughtful decisions regarding medical care. Information
sharing is a model for patient interaction with the health care system that
may significantly improve the care of children and families. This article
focuses on information technologies that utilize user-centered design principles
and interactive capabilities to facilitate information sharing and to empower
children and families. Examples include electronic pediatric personal medical
records, customized health information systems, and interactive physician
offices with electronic mail (e-mail) and telemedicine capabilities. Ideally,
these systems would all be integrated. Successful implementation of new technologies
will require thoughtful attention and balanced solutions to tensions between
information sharing vs security, and curatorship vs censorship. Issues related
to access and the digital divide must also be addressed. Acceptance and usability
of new technologies is predicated on close collaboration among physicians,
researchers in informatics, librarians, educators, and other professionals
with expertise in the human-computer interface. Child and family empowerment
will be both the driving force and ultimate outcome of information-sharing
technologies.
INTRODUCTION
Physicians who provide pediatric care understand that families need
information to parent more effectively, make thoughtful health care decisions,
and engage in meaningful discussions with health care providers. This basic
tenet of pediatric care is also the model for health care interactions that
utilize information technology to promote "patient empowerment."
Patient empowerment is the enhanced ability
of patients to actively understand and influence
their health status.1 Information is central
to patient empowerment. The emergence of the personal computer, the Internet,
and the World Wide Web during the past 2 decades has dramatically increased
patients' ease of access to health information. More than half of Internet
users state that they have searched the Web for health information. Of these,
close to 50% believe that Web-based health information improved the way they
take care of themselves, affected their decisions about treatments and care,
and led to more questions for their physician or to a second opinion.2 Nearly two thirds of patients attending a specialty
clinic state that they plan to use the Web as a medical information resource.3 If one measure of patient empowerment is the extent
to which it is simply exercised without formal authorization, then the active
participation of children and families at every level of health care decision
making is not merely a trend, but a reality. It is essential that physicians
understand how the information revolution influences the health care they
provide, how it will increasingly help them to help children and families,
and why their use of evolving information technologies for information exchange
with children and families will be increasingly expected.
The patient relationship to the acquisition of health information can
be categorized into 3 models of interaction (Figure 1).4 The traditional medical
model involves the dissemination of information from an authoritative source
(physician) to a passive user (patient). Adult learning theory clearly demonstrates
that this model does not optimize education or motivation.5
In the health care consumer model, the flow of information is reversed but
remains unidirectional, with patients independently searching the Internet
for health information. Although patients who search the Internet are "activated"
as consumers of health information, they are not necessarily empowered and
may be misinformed since information may not be relevant or accurate. In the
health information–sharing model, the flow of information is bidirectional,
with interaction and feedback between physician and patient yielding information
that is accurate, timely, and patient-specific. This interactive approach
has the potential to significantly improve the care of children and families.
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The patient relationship to the acquisition of health information.
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Information technologies can empower children and families by providing
a mechanism for interaction with physicians and the health care system. Patients'
active involvement in their own health care improves health outcomes and reduces
health costs.6 "Activated patients" are central
to both the process and the ultimate outcome of several proposed models for
patient empowerment, including informed choice of insurance plan, shared decision
making, and self-management.7 An overview of
specific pediatric needs regarding the electronic medical record, decision
support, information standards, communication, large database exploration,
education, and bioinformatics was recently presented at an expert meeting
on Information Technology in Children's Health Care, sponsored by the Agency
for Health Care Research and Quality (Rockville, Md).8
The digital divide and pediatric-specific barriers to the acceptance of information
technologies were also addressed.9 This article
focuses on specific examples of information technologies that utilize user-centered
design principles and interactive capabilities to facilitate information sharing
and empower children and families. Examples include electronic pediatric personal
health records, customized health information systems, and interactive physician
offices with e-mail and telemedicine capabilities.
USER-CENTERED DESIGN
User-centered design is a process by which a product is developed using
feedback from the intended users to modify and improve the product.10 User-centered pediatric information technologies
must be able to accommodate local needs of special populations (eg, Asian,
rural, disabled) and special locations (eg, day-care centers, schools), and
be compatible with different platforms (eg, computers, personal digital assistants,
cellular telephones). Finally, pediatric information technologies must offer
information appropriate to a broad range of developmental levels. It is essential
that information technologies reflect and support the graduated decision-making
capabilities of children and adolescents. A great deal of information has
been gathered on user preferences of adults,11, 12, 13
but there is minimal information for children.14, 15, 16, 17, 18, 19
One recent study found that cognitive abilities may be key to retrieving information
successfully from Web-based systems.20 Information
systems designed specifically for children are in development.21, 22, 23, 24
User-centered pediatric information technologies must be contextualized
within the milieu of existent child health delivery systems. Children's medical
care frequently has implications for multiple domains of child functioning
and for programs provided by other human services sectors. However, system-level
interaction among medical, educational, legal, mental health, and public health
services are currently either nonexistent or awkward and tangential.25 The link between medical services and insurance programs
is inefficient, with as much as 25% of physicians' time devoted to paperwork.26 Duplication of administrative procedures detracts
from time spent on the clinical encounter, and lack of service integration
functions as a disincentive to both access and quality of pediatric care.
Information technologies have the potential to improve efficiency across
health care systems and to optimize child and family access to services. Such
improvements will require prioritization of the needs and preferences of physicians
and children and families with software programs that incorporate principles
of user-centered design. For example, it is technologically possible for data
showing an individual child and family eligible for the Medicaid program to
automatically trigger eligibility and enrollment for food stamps and the Women
Infants and Children program. Likewise, information technologies could automatically
update a child's immunization status with the local school, after-school day-care
program, emergency department, and physician's office. Similarly, the child's
insurer can be billed and data provided for health surveillance to the public
health department.
Concern about patient confidentiality in general, and the federal Health
Insurance Portability and Accounting Act (HIPAA) in particular, are generally
cited as barriers to this type of health information sharing.27
However, HIPAA may eventually become a major driving force for user-centered
design of information technologies because children and families maintain
ownership of these information systems.
The HIPAA was introduced to standardize the interchange of all electronic
health data for administrative transactions and to protect the security and
confidentiality of electronic health information. The act will apply to all
(not just electronic) health information.28
Health care providers will be required to obtain written consent from a patient
for the use and disclosure of all health information, including routine and
nonroutine issues. Patients will be entitled to a disclosure history, and
will have the right to review and copy their own medical records and request
amendments or corrections to the record. The effect of HIPAA on health care
interactions is hard to predict. However, it clearly will provide patients
with greater control over their own health information.
The pediatric personal medical record (PPMR) is intended for individual
use and includes personal assessments of health status and linkages with the
physician record.29 It is HIPAA-compliant by
definition since patients explicitly decide who has access to their information.
The PPMR promotes user-centered information sharing and facilitates the integration
of formal and informal systems of care, further empowering children and families.
The PPMR is advocated by the World Health Organization30
and has been implemented regionally in England31
and Australia.32 Studies have demonstrated
that personal health records are accurate,33
well-maintained,34 accepted,35
and associated with improved health outcomes.36
An electronic version of the PPMR provides interactive capabilities to further
enhance health information sharing.
The exact form of an electronic PPMR is evolving, but it may ultimately
resemble personal finance management programs such as Quicken (Intuit Inc,
Mountain View, Calif). Personal computer software programs called "health
information managers" are widely available and relatively inexpensive ($50-$150),
though they currently have limited interactive capabilities. Examples include
HealthTracker PC,37 Health-Minder,38 HealthProfiler,39
and Personal Health Record.40 An interactive
PPMR may eventually reside on an individual's personal computer, commercial
Web site, or other commercial system, and part of it may exist in other forms
such as smart cards or electronic dogtags.41, 42
Standards will need to be developed for information archival and retrieval
from the PPMR, including translation between technology systems. For example,
a physician may use free-text medical language when charting, which is automatically
converted into an age-appropriate, controlled medical language system for International Classification of Diseases, Ninth Revision (ICD-9) coding, billing, and quality through compliance standards. This issue
is more fully addressed elsewhere.8, 43
The challenge is to make the PPMR function also as a customized health
information system that facilitates information sharing. Preliminary efforts
to integrate health information with online patient records are promising.44 In addition, several companies offer interactive
personal "disease records" for patients with chronic conditions. For example, http://www.diabetes.com45 provides the
convenience of a pharmacy, support group, periodic preventive-health information,
and ready access to a variety of experts for nonurgent questions about diabetes
mellitus. These online "disease management" services provide customer convenience,
access to expertise, and a feedback loop for self-monitoring. Disease management
programs have been criticized because they bypass primary care and do not
accommodate medical complexity.46 An interactive
PPMR that is tailored to the patient rather than the disease is a more challenging
goal. This would involve the integration of personalized consumer health information
with the PPMR and the development of interactive online physician offices.
The ideal PPMR would do much more than document physician-patient interactions;
it would be the actual mechanism for these interactions.
INTERACTIVE CAPABILITIES
Information technologies with interactive capabilities are necessary
to facilitate information sharing and empower children and families. Families
currently receive their medical information from friends, family, television
and magazines,47 and in the form of physician-family
interactions and parent handouts.48 Increasingly,
the Internet is a source of health information.49
There are now more than 500 000 pediatric-related Web sites on the Internet.50 Because the Internet is unregulated and rapidly changing,
the quality of this health information varies greatly.51
Three strategies are available to address this issue: Web site "seal of approval"
standards52, 53, 54, 55, 56, 57;
patient assessment tools for Web site evaluation58;
and formal organization and maintenance of health information on the Web (ie,
curatorship).
Curatorship of digital libraries includes the organization of digital
information to meet the specific needs of children and families and the maintenance
of this information to assure overall quality and accuracy. It has been demonstrated
that appropriate organization of consumer health information leads to increased
utilization of pediatric-related information.59
Some excellent prototypes for pediatric digital libraries include KidsHealth,60 PEDINFO,61 and generalpediatrics.com.62 However, digital libraries are just one component
of interactive information technologies. Ideally, such technologies would
provide both medical and nonmedical information and access to both formal
and informal systems of care. For example, access to quality measures by which
to rate insurance companies63, 64
can empower families to make an informed choice of insurance plan,7 and information on educational and recreational opportunities
can empower children and families to take advantage of community resources.
Finally, links to informal electronic support groups can offer access to the
"gray literature" of unpublished medical information and the informal expertise
of families who have first-hand experience with new research and treatment.65, 66 Electronic support groups may be
accessed via open (eg, listservs or Internet e-mail discussion groups) or
closed information technologies (eg, Starbright World67).
If families and physicians share access to customized, child-specific health
information, all parties will be better informed when making therapeutic decisions.
Thus, the real challenge for information technologies is not so much content
or curriculum development, but the development of interactive mechanisms by
which to make information individually tailored, timely, and relevant (ie,
a system that promotes information sharing).
An interactive physician office with links to patients' personal health
records can serve as an important information hub for physicians, children,
and families. Physician e-health networks such as Medem,68 http://www.beansprout.com,69 and http://www.kidsgrowth.com70 integrate
high-quality online health information with point-of-care services. For example,
parents of children with gastroenteritis can turn to their physician's Medem
Web site for the office (and American Academy of Pediatrics) policy on oral
rehydration and American Medical Association–sponsored updates on newsworthy
medical issues. This information is validated by the physician encounter and
can reinforce treatment recommendations and increase adherence.71
Yet information technology that merely functions as an electronic version
of the parent handout does not take advantage of unique interactive capabilities
available online. E-mail and telemedicine are interactive technologies that
permit information sharing. These technologies provide a mechanism for shared
decision making. They also facilitate physician-patient partnerships by promoting
self-care and self-management skills.
Unlike telephone conversations, which require that physician and patient
be available at the same time, e-mail is an asynchronous communication mode72, 73 that allows continuous access to
the health care system for nonurgent matters such as care coordination, augmented
screening, symptom monitoring, and self-management. E-mail is also self-documenting.
A message can be printed by patients who wish to refer to instructions, and
by office personnel for placement in the paper or electronic medical record.
Appointment scheduling by e-mail could decrease the amount of time parents
of a medically complex child spend on the phone. E-mail would also save time
and add focus to in-person encounters if parent-completed developmental screening
measures were distributed electronically prior to well-child care appointments
and if children with attention-deficit/hyperactivity disorder, who require
titration of medications, could fill out a customized e-mail template for
daily symptom monitoring. E-mail has been used effectively to promote self-management
and self-monitoring among adults with human immunodeficiency virus74 and may be particularly useful for chronic conditions,
that require frequent monitoring and therapy adjustments.
Whether e-mail between physicians and patients can have advantages for
the therapeutic relationship is an important research question, but it seems
intuitively valid given the growing patient demand for online access to their
physicians. One half of Internet users state that they are interested in e-mailing
their physician's office, and 33% of this group state that they would switch
physicians for interactive physician offices with e-mail capabilities.75 Guidelines are now established to help physicians
with the clinical use of e-mail.76 Interface
designs to address issues such as excessive use and queries from unknown patients
can be built into office-based e-mail systems.77, 78
Clear office policies regarding patient-physician e-mail communication are
also recommended.79
E-mail communication offers several advantages over telephone communication,
but it is relatively unsophisticated as an interactive health care tool. Interactive
personal medical records that are integrated with point-of-care services would
benefit all children and families, particularly children with chronic conditions
and their families. New models for long-term care delivery systems recognize
that families' information needs must be met if productive interactions between
"activated" (empowered) patients and "proactive" practice teams are to occur.80 A convincing literature on self-management programs
for adults with chronic conditions suggests that interactive strategies to
promote self-efficacy and self-monitoring are superior to traditional didactic
formats.81, 82 Self-management
may become one of the most exciting areas for innovation in information-sharing
technologies since it is predicated on patients' involvement in their own
health care.
The Baby Care Link program uses telemedicine as part of an innovative
self-management support service for families of premature infants.83 The program provides desktop video conferencing between
the home and the intensive care unit; interactive parent information; and
access to an online parent support group. Parents report greater satisfaction
and comfort with their infants' care, allowing earlier intensive care unit
discharge of infants and fewer transfers to community hospitals for intermediate
care. Video conferencing would also benefit home care personnel and family
caregivers of medically complex children, for whom transportation to multiple
specialists is costly or burdensome. Video conferencing is useful in situations
in which motion or intangibles are important (eg, where body language and
mood are conveyed), such as remote psychiatry and remote monitoring for seizures
or apnea (R. S. Bakalar, MD, e-mail communication, August 2000). Other applications
might include telemonitoring for developmentally disabled adolescents and
young adults transitioning to independent living. The technological advances
from the Next Generation Internet Initiative projects84
are expected to supply the types of connections necessary to do high-quality,
real-time video conferencing on the Internet. Telemedicine issues to be considered
include convergence of practice standards for patient evaluation, treatment
and prescriptions, and practice standards for licensing and compliance.
CONCLUSIONS
The information technologies outlined throughout this article facilitate
information sharing, and thereby empower children and families and physicians
as well. They have the potential to reframe traditional power relationships
with interactions that promote information sharing, a process that recognizes
and supports the unique nature of child-family-physician partnerships.
Implementation of information-sharing technologies will require thoughtful
attention and balanced solutions to tensions between information sharing vs
security, and curatorship vs censorship. Specifically, this will include rigorous
evaluation of the economic effect of information technology for all constituencies;
the development of appropriate practice standards for patient privacy and
confidentiality; the creation of new legal models so that the appropriate,
free flow of health information can be achieved without undue burden; and
evaluation of the effect of providing comparative health plan information
to families.
Successful implementation and long-term usability of new technologies
will require close collaboration among physicians, researchers in informatics,
librarians, educators, and other professionals who have expertise in issues
related to the human-computer interface.85
It will also require that the voices of children and families be heard at
every stage of design and development. Their empowerment will be both the
driving force and ultimate outcome of information-sharing technologies.
AUTHOR INFORMATION
This is the third part of a 3-part series on technology and pediatrics.
See also: Kaushal R, Barker KN, Bates DW. How can information technology improve
patient safety and reduce medication errors in children's health care? Arch Pediatr Adolesc Med. 2001;155:1002-1007; and Weitzman
M, Shiffman RN. Information technology and the future of child health care:
a revolution is occurring. Arch Pediatr Adolesc Med.
2001;155:990-991.
Accepted for publication April 10, 2001.
Presented at the Expert Meeting on Information Technology in Children's
Health Care: Beginning to Ask the Needed Questions, sponsored by the Agency
for Health Care Research and Quality, and the American Academy of Pediatrics
Center for Child Health Research, Rockville, Md, September 21-22, 2000.
What This Study Adds
Patients' active involvement in their own health care improves health
outcomes and reduces health costs. Information is central to patient empowerment.
The emergence of information technologies has increased patients' access to
health information.
This article discusses examples of information technologies that utilize
user-centered design principles and interactive capabilities to facilitate
information sharing that can empower children and families and physicians.
From the Children's Hospital of Iowa, University of Iowa, Iowa City
(Dr D'Alessandro); and the Strong Children's Research Center, University of
Rochester College of Medicine and Dentistry, Rochester, NY (Dr Dosa).
Corresponding author: Donna M. D'Alessandro, MD, Department of Pediatrics,
Children's Hospital of Iowa, 200 Hawkins Dr, Iowa City, IA 52242-1009 (e-mail: donna-dalessandro{at}uiowa.edu).
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