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P. Flatley Brennan,
Y.-S. Kuang,
K. Volrathongchai
School of Nursing and College of Engineering, University of Wisconsin-Madison, Madison, Wl, USA
1. Introduction
Patient-centered care represents an emerging theme of health care in the United States. Its scope is broad, rang- ing from health service activities tai- lored to the specific health needs ofthe individual to a holistic philosophy that targets health services promotion to ~he whole person. Patient-centered care encompasses health care that is attendant to the identified clinical prob- lems of the patient while responsive to individual and family characteristics such as affective states, perceptions, preferences, and resources [1,2]. Pa- tient-centered care demands patient- centered information systems. A key characteristic of patient-cen- tered care is the active involvement of 1he patient in the care delivery pro- cess. The gradual but deliberate tran- sition of health services from the hos-
ital and clinic to the home and com-
unity creates an environment in which
tients must independently assess and terpret symptoms, seek appropriate
· ook ofMedical Informatics 2000
Review Paper
Review Paper
Patient-centered Information
Systems
Abstract: Patient-centered information systems augment traditional approaches to health information management with specific functions designed to support patient participation in health care decision making and treatment activities. In addition to computer-based record systems and business management applications, patient-cen- tered information systems must include functionality that support communication between clinician and patient, and that provide information and peer support in a timely fashion to the patient. Current progress in information systems demonstrates the existence and feasibility of consumer health informatics, patient access to computerized clinical records, and technical and organizational solutions to integrating computerized patient information systems. We are now proposing a model of patient-centered system that incorporates all those components, and provides a vision of the future.
health services in a purposeful man- ner, and engage in health promotion, disease prevention, and illness man- agement activities. Additionally, the patient's own values and preferences have increased relevance to and influ- ence on selecting treatment options [3]. To accomplish these tasks, patients require access to information about disease processes, credible interven- tion strategies, and personal health data. Information systems are needed that provide patients with access to these types of information. Patient-centered care presents nurses, physicians, and other health care providers with new information access and management challenges. Clinicians must better understand the every day health concerns and health practices of their patients. Recognition of the contribution of health behaviors, dietary patterns, exercise routines, and daily stressors in disease prevention demands that clinicians know a great deal about their patients' habits. Be- cause environmental exposure to tox-
ins contributes to many diseases, clini- cians increasingly need information about the work lives, living situations, and community contexts of their pa- tients. These parameters are rarely captured in contemporary health infor- mation systems. Information systems are needed to support clinician access to this wide range of information and to the sophisticated management strate- gies that integrate personal health in- formation, biomedical research, and environmental contexts. Patient-centered information sys- tems augment traditional approaches to health information management with specific functions designed to support patient participation in health care de- cision making and treatment activities. In addition to computer-based record systems and business management applications, patient-centered informa- tion systems include a mechanism to support communication between clini- cian and patientto provide information and peer support in a timely fashion to the patient. Also needed are the tech-
Re1tiew Paper
nical and logical functions that inte- grate information from multiple orga- nizations into a unified, manipulable clinical support tool for use by both clinicians and patients. Patient-cen- tered information systems represent an approach to managing health infor- mation that empowers patients as full users (^) of the information systems. The purpose of this paper is to evaluate the state of existing information systems in terms of their progress toward provi- sion of patient-centered systems. Re- searchers in this study will propose a model of patient-centered information systems and will identify social, politi- cal, and technical issues that challenge this model.
- Progress toward Patient- Centered Information Systems
Viewed developmentally, the state of computer-based information man- agement in health care can be charac- terized as on a trajectory from transac- tion-focused systems that record and manage the operational aspect of an institution through computer-based record data systems that delineate as- pects of the clinical care encounter to a mature model of patient-centered systems that integrate diverse sources of salient health information to create a dynamic resource for use by patients and clinicians. Evidence exists that suggests a readiness for patient-cen- tered systems: (1) information re- sources specifically for patients, (2) feasibility and value of patient access to computerized clinical records, and (3) technical and organizational solu- tions to integrating computerized pa- tient information systems.
2.1 Consumer Health Informatics:
Information Resources Relevant
to Patients
Patients require information as they engage in self-help, self-care, and dis-
80
ease management activities. Consumer Health Informatics (CHI) denotes free- standing computer systems and Internet resources, primarily World Wide Web- based (WWW), designed to deliver he~lth information directly to lay per- sons. CHI is a new strategy in using information technology to provide health information in terms of health education, communication, and clinical data access. Patients can access Internet-based information services from the home or from public com- puterterminals. Krishna and colleagues [4] categorize computerized patient education into three groups: 1) instruc- tional computer programs, 2) comput- erized health assessment and history taking, and 3) computerized informa- tion support networks. CHI also pro- vides peer communication via support- ive groups and professional communi- cation via email. Moreover, CHI pro- vides clinical data to patient as well as lay person, ill or well, who want accu- rate information in a timely manner [5]. Improving consumer health care involves incorporating the concepts of consumer empowerment and in- dividual preference with health care delivery [6]. CHI has the potential to augment and improve the effective- ness of health information systems and, by extension, health care delivery. Its impact may be even greater when the content is tailored to the salient aspects of the patient. Tailoring refers to the strategies used to map informa- tion to an individual's needs, percep- tions, preferences, and cognitive strategies [7]. The tailored CHI should provide patients with specific information about their illness and health behaviors, health education related to their needs, and feedback tailored to individual health needs. Tailoring varies in scope from basic diagnosis status to the health coun- seling process. Consumer health informatics offers promising ap- proaches to matching patient need with information resources [8].
2.1.1 CHI as the Patient
Educational Tool
Usinginformationtechnologytopro- vide consumer health information is done through implementation of pa- tient educational tools. Their educa- tional effectiveness is based on clini- cian appraisals of the quality and rel- evance of the health information pro- vided [9]. (^) An example of a CHI tool is CHESS (the Comprehensive Health Enhancement Support System) [10], which is a computer system designed to offer HIV -positive patients online health information, decision supports, and connections to experts and other patients. Gustafson and colleagues [10] report that CHESS users had signifi- cantcognitive functioning improvement and, during CHESS implementation, a reduction in the number ofhospitaliza- tions and lengths of stay. Krishna and colleagues [4] have demonstrated that computerized educational interventions can lead to increased knowledge. Brug and colleagues [7] conclude that the computerized nutrition education moti- vated people to change their diet. Still needed in the literature are studies demonstrating the long-term impact of these interventions on key outcome variables such as health services utili- zation, clinical parameters (e.g., weight loss) and adoption of new health be- haviors. Additionally, information is needed on consumer preferences for health information. Tang and colleagues have employed a series of focus groups to derive the Personal Articulate Timely Informa- tive Endorsed Next-step Therapeutic (P.A.T.I.E.N.T.) guidelines for pro- viding information to patients. £er- sonal means patients need access to special information regarding their per- sonal health. They also require clarity in the document (Articulate). They wantto access their health information in a Iimely manner as well. An infor- mative CHI should be tailored to pa- tients' need in terms of specificity to their problems and matching with their
Yearbook ofMedical Informatics 2000
Review Paper
that is underway to evaluate the utility and effectiveness of the elements of the PCASSO system. Similar trials are underway at Columbia Presbyterian Medical Center [27].
2.1.4 Integration across
Institutional Information Systems
Patients rarely receive care from a single institution or care provider. In the United States in 1996, more than 75% of the American public had at least one ambulatory care visit, 50% received prescription services, and approximately 45% received dental services. Thus, visits to three or four distinct health care institutions are not uncommon [28]. Present mechanisms for supporting integration of clinical records across clinical care institutions rely on physical transfer of duplicate paper records. Three computer and net- work-based strategies have had varying success in the US with electronic trans- fer and integration of records: 1) Com- munity Health Information Networks (CHINs), 2) Web-based integration of selected elements from disparate data- bases, and 3) Web-enabled display of data from disparate data sources. CHINs emerged in the early 1990s as a promising mechanism linking the information flow and communication channels across institutions [29]. The motivation for this integration arose from several areas: market factors, patient health service-seeking behav- ior, and technical feasibility. A primary advantage of the CHIN model rested in its promise to move data sharing and communication transfer out ofthe realm ofinstitution-to-institution level and into a common community market place. Individual institutions retained control over the nature, amount, and frequency of data sharing. The integration strat- egy rested on providing a common, secure communication channel. Barri- ers such as competing organizational interests and the lack of common lan- guage structures relegated the CHIN's initiative to supporting only common-
82
· place, non-secured communication across facilities. In contrast to the communication pathway approach to building patient- centered systems, more recent strate- gies have attempted to use publicly available channels to exchange pa- tient-specific data across institutions. The key developments here have been the introduction of data security mea- sures sufficiently strong to ensure ac- cess only by authorized users and data integration strategies that overcome language and format disparities across organizations. W3EMRS is an archi- tecture model that uses features of the World Wide Web to construct a single vision of clinical records extracted from multiple institutions [30]. W3EMRS relies on three key components: insti- tution-specific data sources with pub- lic exposures, an integrating or consoli- dating mechanism for merging data from these data sources, and a security system that automatically authenticates requests for information and authorizes release ofthe information for distribution through secure WWW channels. CareWeb, developed as an imple- mentation of the W3EMRS architec- ture, solved part of the problem of creating an integrated view of clinical records across two formerly indepen- dent hospitals once they had merged into a single delivery network [31]. The integration challenges included establishing links across unique lan- guage systems, connecting legacy da-: tabases running under different oper- ating systems, and generating com- mon images of data extracted from distinct systems. Security measures included implementation of strong en- terprise -wide authentication, access validation, and multi-organizational audit trails. CareWeb provides inte- gration at the level of viewing data, not at the level of manipulating data. As such, it provides a model for supporting patient-centered care by ensuring that clinicians at a given facility can view patient data that may have originated
at a different facilitY. Full implementa~ tion of patient-centered systems will require additional developments, such as the ability to securely establish inte- grated views across institutions on an ad-hoc, on-demand basis and the abil- ity to manipulate data from disparate sources. Resolution of these issues is
as much organizational as it is technical.
3. A Model for Patient-
Centered Information
Systems
Current progress in information sys- tems demonstrates the existence and feasibility ofconsumerhealthinformatics 1 patient access to computerized clinical records, and technical and organiza- tional solutions to integrating comput- erized patient information systems. The researchers in this study are proposing a model of patient-centered systems that incorporates those components. Figure 1 presents the model of patient- centered systems. The purpose of this model is to serve as a conceptual framework that identifies specific com- ponents and linkages that will engage the patient's perspective in the design of a health information system. The patient is the center of the model; the information is integrated to generate the flow of communication. The surrounding elements denote the diverse sources of health information, including encountered health care pro- viders, consumer health informatics, and the patient's furtive record. The circle of communication layer repre- sents the integration of the clinical, consumer health, and personal furtive information for a patient-centered health focus. It includes the static com- munication of a patient's medical record as well as the dynamic communication generated through e-mail. It also indi- cates the feature of two-way data flow between the center and the sur- roundings. Outside the circle of the information flow, but still connected,
Yearbook ofMedical Informatics 2000
exist other information systems devel-
oped for use by one health organiza-
tion, but now part of the free informa-
tion exchange. Wha~follows is a discus-
sion of each key element in the model.
3.1 Computerized Patient
Record
An idealized version of the com-
puter-based patient record (CPR) is
seen in digitally stored health care
information about an individual's life-
time, including all the information on a
patient's history, physical examinations,
diagnostic tests, and therapeutic inter-
ventions done to support the patient's
care. CPR can be manipulated by
computer-based tools so that knowl-
edge about care can be used to gener-
ate alerts, warnings, and suggestions
as well as decision support and can be
monitored in a straightforward and
timely fashion [32]. CPR is also used
to support the continuity of care across
all points of care provided with infor-
mation organized and displayed in a
variety of different ways that are tai-
lored to particular clinical or individual
needs, including patient and clinicians.
Clinicians can use CPR for direct pa-
tient care, quality assessment of care,
management and planning support, and
research and education [33]. The com-
puter applications that extract patient
records and present them to the clini-
cians need to be designed as patient
centered with integrated information
from all services, providers, and epi-
sodes of care to allow providers to focus
on patients and not departments [34,35].
3.2 Patient
Patients should also be empowered
as participants and central partners in
the information flow. Studies reveal
that technology is advanced enough to
implement patients' rights and respon-
sibilities to access their health data via
secured and accountable methods [36-
38]. Patients access CPR to under-
Fig.l Patient-centered system model
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Review Paper
stand individual health status, health
care history, and furthermore, to seek
information about self-management
and decision making. This process will
enable patients to be more in control
and have better health outcomes
[39 ,40]. The World Wide Web creates
an appealing and user-friendly me-
dium for patients to access the infor-
mation. Along with other advanced
technology, clinical data can also be
collected from a patient's home to be
used for remotely monitoring the health
status of a patient <[41,42] and for
supporting individuals correspondingly
viae-mail.
Hospitals and Clinics. Due to the
diverse nature of the current health
care delivery system, timely access
and updating of patient records across
multiple institutions must be ensured to
strengthen the quality of care. Patient
records need to be integrated elec-
tronically; electronic data interchange
(EDI) is the tool used to accomplish
this. EDI is e-mail that can be con-
veyed from one computer to another
without manual intervention. Commu-
nication depends on the use of mes-
sages that are syntactically and se-
mantically understood by both sending
and receiving systems. I-ll..-7 (Health
Level Seven) and EDIFACT (Elec-
tronic Data Interchange for Adminis-
tration, Commerce, and Transport) are
two health care standards used for
communication with internal and ex-
ternal systems, respectively. With stan-
dardized messages used to transmit
data, data exchange become system
and application independent. A set of
standardization issues [43] critical for
a successful electronic data interchange
includes the record architecture, ter-
minology (taxonomy) [44], and com-
munication.
3.3 Other Providers
Other than the enterprise health care
organizations, there might be indepen-
dent providers, for example, pharma-
cists, engaging in the health care deliv-
11~••--------------------------------------~--------------------~~-e_mw_. ____ P~ap __.er enor-forgiveness,andsatisfaction[53]. A patient-centered information sys- tem serves multiple users simulta- neously. User skill andmotivationmust
be augmented with innovative, flexible
interface design strategies to meet these diverse needs.
6. summary.
Health care is not only prepared for, but demands and needs, patient-cen- tered information systems. Demon- strable skill levels among patients and available technologies portend a readi- ness for designing clinical record sys- tems based on patient-centered phi- losophy. Key characteristics of the system include:
1. System functions are accessible by
patients.
2. Patients can gain access and can
contribute meaningfully to the sys- tem.
3. Patients and clinicians access all
informationrelevant to the patient's health state, community context and life experience.
4. Desirable features include:
- general search
- random access
- The system delivers important parts of the patient clinical record at the site of care. independent of the source of information.
6. Clinicians benefit from the integra-
tion.
- The system provides information access and retrieval at the site of care.
Acknowledgment Support for preparation of this paper carne from the Moehlman Bascom Professor- ship and the Graduate School, University of Wisconsin-Madison.
t'arbook ofMedical Informatics 2000
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Address of the authors: Patricia Flatley Brennan, RN, PhD, FAAN, FACMI, Yung-ShinKuang, MSIE, Kanittha Volrathongchai, MSN, School of Nursing and College of Engineering, University of Wisconsin-Madison, 1513 University Avenue, Madison, WI 53706, USA. pbrennan @engr. wisc.edu
Yearbook ofMedical Informatics 2000
