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1.  Towards the Implementation of Quality of Life Monitoring in Daily Clinical Routine: Methodological Issues and Clinical Implication 
Breast Care  2009;4(3):148-154.
Quality of life (QOL) has become a widely used outcome parameter in the evaluation of treatment modalities in clinical oncology research. By now, many of the practical problems associated with measuring QOL in clinical practice can be overcome by the use of computer-based assessment methods. QOL assessment in oncology is dominated by two measurement systems, the FACT scales and the EORTC QLQ-C30 with its modules. The amount of human resources required to implement routine data collection has been reduced significantly by advanced computer technology allowing data collection in busy clinical practice. Monitoring of QOL can contribute to oncologic care by facilitating detection of physical and psychological problems and tracking the course of disease and treatment over time. Furthermore, the integration of screening for psychosocial problems into QOL monitoring contributes to the identification of patients who are in need of psychooncologic interventions. Computer-based QOL monitoring does not replace the direct physician-patient communication but enables to identify specific impairments and symptoms including psychological problems. Beyond clinical practice, QOL data can be used for research purposes and may help health care planners to determine those patient services that should be maintained or ones that should be developed.
PMCID: PMC2931001  PMID: 20847874
Breast neoplasms; Quality of life; Computers; Monitoring; Review
2.  Development of a Wireless Web-based Infrastructure to Support Collection of Patient Self-reported QoL and Symptom Information in a Clinical Setting 
We have implemented a survey tool to collect patient-entered Quality of Life (QoL) and symptomology data for clinician use in an outpatient cancer treatment center. The system is currently implemented using a web infrastructure and delivered to patients in the waiting room via wireless laptops. The software assesses and records patient consent, delivers survey questions and records answers, and summarizes the results for clinical use in the during the patient's visit. Optionally, the data are recorded in a research database. The infrastructure can be expanded to support generalized survey delivery for future clinical and research purposes. (MESH: Internet, Data Collection, Quality of Life, Information Systems, Patient Participation, Data Display)
PMCID: PMC2244567
3.  Improving Patient-Centered Medical-Surgical Nursing Practice with Quality of Life Assessment 
Quality of life (QOL) measures have been evolving for almost three decades through oncology research, a major catalyst in the development and refinement of QOL instruments. Research in oncology has set a precedence for other disciplines to show results from the patient’s perspective using QOL as an outcome. Health-related QOL assessment has been shown to enhance monitoring and provider-client communication, and results have been used to provide predictive/prognostic information and to guide treatment decisions. However, survey data on the administration of QOL instruments indicate that only 30–50% of clinicians routinely measure QOL in practice. This article will describe perceived barriers in assessment and application of QOL data, recent improvements in administration and analysis techniques, and an overview of the most widely used QOL instruments available. Nurses are in a prime position to both acquire and use QOL data in clinical practice to inform and monitor individuals and identify population characteristics and needs. The information in this article will inform nurses in oncology and other specialties of the advantages of measuring QOL in practice and to help identify an appropriate instrument for their population and setting.
PMCID: PMC3732743  PMID: 20860248
4.  Measuring the Quality of Life in Patients with Multiple Sclerosis in Clinical Practice: A Necessary Challenge 
While the physical disability aspect of multiple sclerosis (MS) is of great importance, quality of life (QoL) measurements are being considered increasingly important with regard to evaluating disease progression, treatment, and the management of care provided to MS patients. Despite the acknowledged need to consider QoL issues, QoL assessment remains underutilized in clinical practice. These issues should be explored and understood to promote the use of measuring QoL in MS clinical practice. We explore the difficulties for clinicians: choosing and determining the most appropriate QoL measure and how to best integrate QoL measurements into clinical practice. This paper discusses several avenues to provide to clinicians arguments of the clinical relevance and accuracy of QoL instruments and ultimately to enhance the use of QoL measures in clinical practice for MS patients.
PMCID: PMC3603557  PMID: 23533758
5.  Educating Clinicians on New Elements Incorporated Into the Electronic Health Record 
With the widespread use of health information technologies, there is a growing need to educate healthcare providers on the use of technological innovations. Appropriate health information technology education is critical to ensure quality documentation, patient privacy, and safe healthcare. One promising strategy for educating clinicians is the use of participatory e-learning based on the principles of Web 2.0. However, there is a lack of literature on the practical applications of this training strategy in clinical settings. In this article, we briefly review the theoretical background and published literature on distance education, or e-learning, of health information technology, focusing on electronic health records. Next, we describe one example of a theoretically grounded interactive educational intervention that was implemented to educate nurses on new elements incorporated into the existing electronic health record system. We discuss organizational factors facilitating nurses’ in-service education and provide an example of software designed to create interactive e-learning presentations. We also evaluate the results of our educational project and make suggestions for future applications. In conclusion, we suggest four core principles that should guide the construction and implementation of distant education for healthcare practitioners.
PMCID: PMC3759576  PMID: 23774448
Electronic health record; Distance education; Informatics; Inservice training; Nursing
6.  Moving toward multimedia electronic health records: how do we get there? 
This report, based on a workshop jointly sponsored the National Institute of Biomedical Imaging and Biomedical Engineering and the Office of the National Coordinator for Health Information Technology, examines the role and value of images as multimedia data in electronic health records (EHRs). The workshop, attended by a wide range of stakeholders, was motivated in part by the absence of image data from discussions of meaningful use of health information technology. Collectively, the workshop presenters and participants argued that images are not ancillary data and should be central to health information systems to facilitate clinical decisions and higher quality, efficiency, and safety of care. They emphasized that the imaging community has already developed standards that form the basis of interoperability. Despite the apparent value of images, workshop participants also identified challenges and barriers to their implementation within EHRs. Weighing the opportunities and challenges, workshop participants provided their perspectives on possible paths forward toward fully multimedia EHRs.
PMCID: PMC3384122  PMID: 22306113
Electronic health records; medical informatics; radiology
7.  Technology enhanced practice for patients with chronic cardiac disease Home Implementation and Evaluation 
This 3-year field experiment engaged 60 nurses and 282 patients in the design and evaluation of an innovative home care nursing model, technology enhanced practice (TEP).
Nurses in the TEP conditions augmented usual care with a web-based resource (HeartCareII) that provided patients with self-management information, self-monitoring tools, and messaging services.
Patients exposed to TEP demonstrated better quality of life and self-management of chronic heart disease during the first four weeks and were no more likely than patients in usual care to make unplanned visits to a clinician or the hospital. Both groups demonstrated the same long term symptom management and health status achievements.
This project provides new evidence that it is possible to purposefully create patient-tailored web resources within a hospital portal; that it is hard for nurses to modify their practice routines even with a highly-tailored web resource, and that the benefits of this intervention are more discernable in the early post-discharge stages of care.
PMCID: PMC3033014  PMID: 21092830
8.  SOMWeb: A Semantic Web-Based System for Supporting Collaboration of Distributed Medical Communities of Practice 
Information technology (IT) support for remote collaboration of geographically distributed communities of practice (CoP) in health care must deal with a number of sociotechnical aspects of communication within the community. In the mid-1990s, participants of the Swedish Oral Medicine Network (SOMNet) began discussing patient cases in telephone conferences. The cases were distributed prior to the conferences using PowerPoint and email. For the technical support of online CoP, Semantic Web technologies can potentially fulfill needs of knowledge reuse, data exchange, and reasoning based on ontologies. However, more research is needed on the use of Semantic Web technologies in practice.
The objectives of this research were to (1) study the communication of distributed health care professionals in oral medicine; (2) apply Semantic Web technologies to describe community data and oral medicine knowledge; (3) develop an online CoP, Swedish Oral Medicine Web (SOMWeb), centered on user-contributed case descriptions and meetings; and (4) evaluate SOMWeb and study how work practices change with IT support.
Based on Java, and using the Web Ontology Language and Resource Description Framework for handling community data and oral medicine knowledge, SOMWeb was developed using a user-centered and iterative approach. For studying the work practices and evaluating the system, a mixed-method approach of interviews, observations, and a questionnaire was used.
By May 2008, there were 90 registered users of SOMWeb, 93 cases had been added, and 18 meetings had utilized the system. The introduction of SOMWeb has improved the structure of meetings and their discussions, and a tenfold increase in the number of participants has been observed. Users submit cases to seek advice on diagnosis or treatment, to show an unusual case, or to create discussion. Identified barriers to submitting cases are lack of time, concern about whether the case is interesting enough, and showing gaps in one’s own knowledge. Three levels of member participation are discernable: a core group that contributes most cases and most meeting feedback; an active group that participates often but only sometimes contribute cases and feedback; and a large peripheral group that seldom or never contribute cases or feedback.
SOMWeb is beneficial for individual clinicians as well as for the SOMNet community. The system provides an opportunity for its members to share both high quality clinical practice knowledge and external evidence related to complex oral medicine cases. The foundation in Semantic Web technologies enables formalization and structuring of case data that can be used for further reasoning and research. Main success factors are the long history of collaboration between different disciplines, the user-centered development approach, the existence of a “champion” within the field, and nontechnical community aspects already being in place.
PMCID: PMC2626431  PMID: 18725355
Dental informatics; medical informatics applications; communications applications; community networks; group and organization interfaces; interdisciplinary communication; Internet; knowledge bases; online information services; user/machine systems
9.  Informatics application provides instant research to practice benefits. 
A web-based research information system was designed to enable our research team to efficiently measure health related quality of life among frail older adults in a variety of health care settings (home care, nursing homes, assisted living, PACE). The structure, process, and outcome data is collected using laptop computers and downloaded to a SQL database. Unique features of this project are the ability to transfer research to practice by instantly sharing individual and aggregate results with the clinicians caring for these elders and directly impacting the quality of their care. Clinicians can also dial in to the database to access standard queries or receive customized reports about the patients in their facilities. This paper will describe the development and implementation of the information system. The conference presentation will include a demonstration and examples of research to practice benefits.
PMCID: PMC2243629  PMID: 11825156
10.  Patient-reported Symptoms and Quality of Life Integrated into Clinical Cancer Care 
Seminars in oncology nursing  2011;27(3):203-210.
To provide an overview of research and practice related to patient-reported symptom and quality of life assessment integrated into clinical care.
Data sources
Literature retrieved through the PUBMED and CINAHL databases.
Assessing and incorporating patient preferences, engaging the patient in self-report and extending the interaction to the place and time favored by the patient are necessary to bring meaning to the term, patient-centered. There is beginning evidence that these approaches can make a difference, improving care quality.
Implications for nursing practice
Oncology nurses no longer need to be constrained by paper symptom checklists. Patient-reported symptom and quality of life information can be electronically collected and simultaneously made available for home and clinical use through the utilization of Web-based programs.
PMCID: PMC3143403  PMID: 21783011
cancer symptoms; quality of life; patient centered care; clinical informatics; patient reported outcomes
11.  Applying an extended theoretical framework for data collection mode to health services research 
Over the last 30 years options for collecting self-reported data in health surveys and questionnaires have increased with technological advances. However, mode of data collection such as face-to-face interview or telephone interview can affect how individuals respond to questionnaires. This paper adapts a framework for understanding mode effects on response quality and applies it to a health research context.
Data collection modes are distinguished by key features (whether the survey is self- or interviewer-administered, whether or not it is conducted by telephone, whether or not it is computerised, whether it is presented visually or aurally). Psychological appraisal of the survey request will initially entail factors such as the cognitive burden upon the respondent as well as more general considerations about participation. Subsequent psychological response processes will further determine how features of the data collection mode impact upon the quality of response provided. Additional antecedent factors which may further interact with the response generation process are also discussed. These include features of the construct being measured such as sensitivity, and of the respondent themselves (e.g. their socio-demographic characteristics). How features of this framework relate to health research is illustrated by example.
Mode features can affect response quality. Much existing evidence has a broad social sciences research base but is of importance to health research. Approaches to managing mode feature effects are discussed. Greater consideration must be given to how features of different data collection approaches affect response from participants in studies. Study reports should better clarify such features rather than rely upon global descriptions of data collection mode.
PMCID: PMC2903587  PMID: 20576131
12.  An Introduction to Tree-Structured Modeling with Application to Quality of Life (QOL) Data 
Nursing research  2011;60(4):247-255.
Investigators addressing nursing research are faced increasingly with the need to analyze data that involve variables of mixed types and are characterized by complex nonlinearity and interactions. Tree-based methods, also called recursive partitioning, are gaining popularity in various fields. In addition to efficiency and flexibility in handling multifaceted data, tree-based methods offer ease of interpretation.
To introduce tree-based methods, discuss their advantages and pitfalls in application, and describe their potential use in nursing research.
In this paper, (a) an introduction to tree-structured methods is presented, (b) the technique is illustrated via quality of life (QOL) data collected in the Breast Cancer Education Intervention (BCEI) study, and (c) implications for their potential use in nursing research are discussed.
As illustrated by the QOL analysis example, tree methods generate interesting and easily understood findings that cannot be uncovered via traditional linear regression analysis. The expanding breadth and complexity of nursing research may entail the use of new tools to improve efficiency and gain new insights. In certain situations, tree-based methods offer an attractive approach that help address such needs.
PMCID: PMC3136208  PMID: 21720217
breast cancer survivors; CART; quality of life; tree-based methods; random forests
13.  The Translational Medicine Ontology and Knowledge Base: driving personalized medicine by bridging the gap between bench and bedside 
Journal of Biomedical Semantics  2011;2(Suppl 2):S1.
Translational medicine requires the integration of knowledge using heterogeneous data from health care to the life sciences. Here, we describe a collaborative effort to produce a prototype Translational Medicine Knowledge Base (TMKB) capable of answering questions relating to clinical practice and pharmaceutical drug discovery.
We developed the Translational Medicine Ontology (TMO) as a unifying ontology to integrate chemical, genomic and proteomic data with disease, treatment, and electronic health records. We demonstrate the use of Semantic Web technologies in the integration of patient and biomedical data, and reveal how such a knowledge base can aid physicians in providing tailored patient care and facilitate the recruitment of patients into active clinical trials. Thus, patients, physicians and researchers may explore the knowledge base to better understand therapeutic options, efficacy, and mechanisms of action.
This work takes an important step in using Semantic Web technologies to facilitate integration of relevant, distributed, external sources and progress towards a computational platform to support personalized medicine.
TMO can be downloaded from and TMKB can be accessed at
PMCID: PMC3102889  PMID: 21624155
14.  Scientific imperatives, clinical implications, and theoretical underpinnings for the investigation of the relationship between genetic variables and patient-reported quality-of-life outcomes 
Quality of Life Research  2010;19(10):1395-1403.
There is emerging evidence for a genetic basis of patient-reported quality-of-life (QOL) outcomes that can ultimately be incorporated into clinical research and practice. Objectives are (1) to provide arguments for the timeliness of investigating the genetic basis of QOL given the scientific advances in genetics and patient-reported QOL research; (2) to describe the clinical implications of such investigations; (3) to present a theoretical foundation for investigating the genetic underpinnings of QOL; and (4) to describe a series of papers resulting from the GENEQOL Consortium that was established to move this work forward.
Discussion of scientific advances based on relevant literature.
In genetics, technological advances allow for increases in speed and efficiency and decreases in costs in exploring the genetic underpinnings of disease processes, drug metabolism, treatment response, and survival. In patient-based research, advances yield empirically based and stringent approaches to measurement that are scientifically robust. Insights into the genetic basis of QOL will ultimately allow early identification of patients susceptible to QOL deficits and to target care. The Wilson and Cleary model for patient-reported outcomes was refined by incorporating the genetic underpinnings of QOL.
This series of papers provides a path for QOL and genetics researchers to work together to move this field forward and to unravel the intricate interplay of the genetic underpinnings of patient-reported QOL outcomes. The ultimate result will be a greater understanding of the process relating disease, patient, and doctor that will have the potential to lead to improved survival, QOL, and health services delivery.
PMCID: PMC2977054  PMID: 20945161
Quality of life; Patient-reported outcomes; Genetic variables; Theory; Clinical implications
15.  The Emergent Discipline of Health Web Science 
The transformative power of the Internet on all aspects of daily life, including health care, has been widely recognized both in the scientific literature and in public discourse. Viewed through the various lenses of diverse academic disciplines, these transformations reveal opportunities realized, the promise of future advances, and even potential problems created by the penetration of the World Wide Web for both individuals and for society at large. Discussions about the clinical and health research implications of the widespread adoption of information technologies, including the Internet, have been subsumed under the disciplinary label of Medicine 2.0. More recently, however, multi-disciplinary research has emerged that is focused on the achievement and promise of the Web itself, as it relates to healthcare issues. In this paper, we explore and interrogate the contributions of the burgeoning field of Web Science in relation to health maintenance, health care, and health policy. From this, we introduce Health Web Science as a subdiscipline of Web Science, distinct from but overlapping with Medicine 2.0. This paper builds on the presentations and subsequent interdisciplinary dialogue that developed among Web-oriented investigators present at the 2012 Medicine 2.0 Conference in Boston, Massachusetts.
PMCID: PMC3758025  PMID: 23968998
Health Web Science; Medicine 2.0; Web Science; health care singularity; semantic Web; patient engagement; citizen science; crowd-sourcing
16.  Electronic Health Record Impact on Work Burden in Small, Unaffiliated, Community-Based Primary Care Practices 
The use of electronic health records (EHR) is widely recommended as a means to improve the quality, safety and efficiency of US healthcare. Relatively little is known, however, about how implementation and use of this technology affects the work of clinicians and support staff who provide primary health care in small, independent practices.
To study the impact of EHR use on clinician and staff work burden in small, community-based primary care practices.
We conducted in-depth field research in seven community-based primary care practices. A team of field researchers spent 9–14 days over a 4–8 week period observing work in each practice, following patients through the practices, conducting interviews with key informants, and collecting documents and photographs. Field research data were coded and analyzed by a multidisciplinary research team, using a grounded theory approach.
All practice members and selected patients in seven community-based primary care practices in the Northeastern US.
The impact of EHR use on work burden differed for clinicians compared to support staff. EHR use reduced both clerical and clinical staff work burden by improving how they check in and room patients, how they chart their work, and how they communicate with both patients and providers. In contrast, EHR use reduced some clinician work (i.e., prescribing, some lab-related tasks, and communication within the office), while increasing other work (i.e., charting, chronic disease and preventive care tasks, and some lab-related tasks). Thoughtful implementation and strategic workflow redesign can mitigate the disproportionate EHR-related work burden for clinicians, as well as facilitate population-based care.
The complex needs of the primary care clinician should be understood and considered as the next iteration of EHR systems are developed and implemented.
PMCID: PMC3539023  PMID: 22926633
electronic health records; primary care; work burden; qualitative research
17.  Translating Research into Practice: Organizational Issues in Implementing Automated Decision Support for Hypertension in Three Medical Centers 
Information technology can support the implementation of clinical research findings in practice settings. Technology can address the quality gap in health care by providing automated decision support to clinicians that integrates guideline knowledge with electronic patient data to present real-time, patient-specific recommendations. However, technical success in implementing decision support systems may not translate directly into system use by clinicians. Successful technology integration into clinical work settings requires explicit attention to the organizational context. We describe the application of a “sociotechnical” approach to integration of ATHENA DSS, a decision support system for the treatment of hypertension, into geographically dispersed primary care clinics. We applied an iterative technical design in response to organizational input and obtained ongoing endorsements of the project by the organization's administrative and clinical leadership. Conscious attention to organizational context at the time of development, deployment, and maintenance of the system was associated with extensive clinician use of the system.
PMCID: PMC516243  PMID: 15187064
18.  Integrating open-source technologies to build low-cost information systems for improved access to public health data 
Effective public health practice relies on the availability of public health data sources and assessment tools to convey information to investigators, practitioners, policy makers, and the general public. Emerging communication technologies on the Internet can deliver all components of the "who, what, when, and where" quartet more quickly than ever with a potentially higher level of quality and assurance, using new analysis and visualization tools. Open-source software provides the opportunity to build low-cost information systems allowing health departments with modest resources access to modern data analysis and visualization tools. In this paper, we integrate open-source technologies and public health data to create a web information system which is accessible to a wide audience through the Internet. Our web application, "EpiVue," was tested using two public health datasets from the Washington State Cancer Registry and Washington State Center for Health Statistics. A third dataset shows the extensibility and scalability of EpiVue in displaying gender-based longevity statistics over a twenty-year interval for 3,143 United States counties. In addition to providing an integrated visualization framework, EpiVue's highly interactive web environment empowers users by allowing them to upload their own geospatial public health data in either comma-separated text files or MS Excel™ spreadsheet files and visualize the geospatial datasets with Google Maps™.
PMCID: PMC2432052  PMID: 18541035
19.  Considerations in the Construction of an Instrument to Assess Attitudes Regarding Critical Illness Gene Variation Research 
Clinical studies conducted in intensive care units are associated with logistical and ethical challenges. Diseases investigated are precipitous and life-threatening, care is highly technological, and patients are often incapacitated and decision-making is provided by surrogates. These investigations increasingly involve collection of genetic data. The manner in which the exigencies of critical illness impact attitudes regarding genetic data collection is unstudied. Given interest in understanding stakeholder preferences as a foundation for the ethical conduct of research, filling this knowledge gap is timely. The conduct of opinion research in the critical care arena is novel. This brief report describes the development of parallel patient/surrogate decision-maker quantitative survey instruments for use in this environment. Future research employing this instrument or a variant of it with diverse populations promises to inform research practices in critical illness gene variation research.
PMCID: PMC3297487  PMID: 22378135
genetic research; critical illness; intensive care unit; surveys; systematic review
20.  Assessing quality of life in the treatment of patients with age-related macular degeneration: clinical research findings and recommendations for clinical practice 
The importance of incorporating quality-of-life (QoL) assessments into medical practice is growing as health care practice shifts from a “disease-based” to a “patient-centered” model. The prevalence of age-related macular degeneration (AMD) is increasing in today’s aging population. The purpose of this paper is: (1) to discuss, by reviewing the current literature, the impact of AMD on patients’ QoL and the utility of QoL assessments in evaluating the impact of AMD and its treatment; and (2) to make a recommendation for incorporating QoL into clinical practice.
We conducted a PubMed and an open Internet search to identify publications on the measurement of QoL in AMD, as well as the impact of AMD and the effect of treatment on QoL. A total of 28 articles were selected.
AMD has been found to cause a severity-dependent decrement in QoL that is comparable to systemic diseases such as cancer, ischemic heart disease, and stroke. QoL impairment manifests as greater social dependence, difficulty with daily living, higher rates of clinical depression, increased risk of falls, premature admission to nursing homes, and suicide. The National Eye Institute Visual Functioning Questionnaire (NEI VFQ-25) is the most widely used eye disease-specific QoL instrument in AMD. It has been shown to correlate significantly with visual acuity (VA). QoL reflects aspects of AMD including psychological well-being, functional capacity, and the ability to perform patients’ valued activities, which are not captured by a single, numerical VA score.
The literature shows that the adverse impact of AMD on QoL is comparable to serious systemic disease. Eye disease-specific instruments for measuring QoL, such as the NEI VFQ-25, have shown a significant correlation of QoL decrement with measures of disease severity, as well as significant QoL improvement with treatment. The NEI VFQ-25 and other validated instruments provide a wide-ranging assessment of vision-related functioning that is important to patients and complementary to VA measurement. We strongly recommend the incorporation of QoL assessment into routine clinical practice.
PMCID: PMC3702546  PMID: 23836961
wet age-related macular degeneration; quality of life assessment; patient-reported outcome; clinical practice; review; NEI VFQ-25
21.  NCBO Technology: Powering semantically aware applications 
Journal of Biomedical Semantics  2013;4(Suppl 1):S8.
As new biomedical technologies are developed, the amount of publically available biomedical data continues to increase. To help manage these vast and disparate data sources, researchers have turned to the Semantic Web. Specifically, ontologies are used in data annotation, natural language processing, information retrieval, clinical decision support, and data integration tasks. The development of software applications to perform these tasks requires the integration of Web services to incorporate the wide variety of ontologies used in the health care and life sciences. The National Center for Biomedical Ontology, a National Center for Biomedical Computing created under the NIH Roadmap, developed BioPortal, which provides access to one of the largest repositories of biomedical ontologies. The NCBO Web services provide programmtic access to these ontologies and can be grouped into four categories; Ontology, Mapping, Annotation, and Data Access. The Ontology Web services provide access to ontologies, their metadata, ontology versions, downloads, navigation of the class hierarchy (parents, children, siblings) and details of each term. The Mapping Web services provide access to the millions of ontology mappings published in BioPortal. The NCBO Annotator Web service “tags” text automatically with terms from ontologies in BioPortal, and the NCBO Resource Index Web services provides access to an ontology-based index of public, online data resources. The NCBO Widgets package the Ontology Web services for use directly in Web sites. The functionality of the NCBO Web services and widgets are incorporated into semantically aware applications for ontology development and visualization, data annotation, and data integration. This overview will describe these classes of applications, discuss a few examples of each type, and which NCBO Web services are used by these applications.
PMCID: PMC3633000  PMID: 23734708
BioPortal; ontology; web service; REST; Annotator; Resource Index
22.  Evaluating the quality of life of cancer patients: assessments by patients, significant others, physicians and nurses 
British Journal of Cancer  1999;81(1):87-94.
This study examined the usefulness of caregiver ratings of cancer patients' quality of life (QOL), an issue of relevance to both adequate patient care and to the possible use of proxy QOL raters in clinical studies. We compared QOL ratings of 90 cancer patients receiving inpatient chemotherapy with those provided by their significant others (most often the spouse), physicians and nurses. During patients' scheduled appointment for receiving chemotherapy on a clinical ward, all raters completed independently the Dartmouth COOP Functional Health Assessment charts/WONCA, an instrument developed by a cooperative group of primary care physicians to briefly assess a core set of seven QOL domains (physical fitness, feelings, daily and social activities, overall health, pain and quality of life) by single items with five response options. With few exceptions, mean scores of the proxy raters were equivalent or similar to those of the patients. Most patient–proxy correlations varied between 0.40 and 0.60, indicating a moderate level of agreement at the individual level. Of all comparisons made, 41% were in exact agreement and 43% agreed within one response category, leaving 17% more profound patient–proxy discrepancies. Disagreement was not dependent on the type of proxy rater, or on raters' background characteristics, but was influenced by the QOL dimension under consideration and the clinical status of the patient. Better patient–proxy agreement was observed for more concrete questions (daily activities, pain) and for patients with either a very good (ECOG 0) or poor (ECOG 3) performance status. The results indicate that both significant others and health care providers can be useful sources of information about cancer patients' QOL. © 1999 Cancer Research Campaign
PMCID: PMC2374350  PMID: 10487617
quality of life; proxy respondents; agreement; questionnaire
23.  Sampling Challenges in Nursing Home Research 
Research on end-of-life care in nursing homes is hampered by challenges in retaining facilities in samples through study completion. Large-scale longitudinal studies in which data are collected on-site can be particularly challenging.
To compare characteristics of nursing homes that dropped from study to those that completed the study.
102 nursing homes in a large geographic 2-state area were enrolled in a prospective study of end-of-life care of residents who died in the facility. The focus of the study was the relationship of staff communication, teamwork, and palliative/end-of-life care practices to symptom distress and other care outcomes as perceived by family members. Data were collected from public data bases of nursing homes, clinical staff on site at each facility at two points in time, and from decedents’ family members in a telephone interview.
17 of the 102 nursing homes dropped from the study before completion. These non-completer facilities had significantly more deficiencies and a higher rate of turnover of key personnel compared to completer facilities. A few facilities with a profile typical of non-completers actually did complete the study after an extraordinary investment of retention effort by the research team.
Nursing homes with a high rate of deficiencies and turnover have much to contribute to the goal of improving end-of-life care, and their loss to study is a significant sampling challenge. Investigators should be prepared to invest extra resources to maximize retention.
PMCID: PMC3534936  PMID: 23041332
Sampling; nursing homes; end-of-life care
24.  Impact of Health Portal Enrollment With Email Reminders on Adherence to Clinic Appointments: A Pilot Study 
Internet portal technologies that provide access to portions of electronic health records have the potential to revolutionize patients’ involvement in their care. However, relatively few descriptions of the demographic characteristics of portal enrollees or of the effects of portal technology on quality outcomes exist. This study examined data from patients who attended one of seven Duke Medicine clinics and who were offered the option of enrolling in and using the Duke Medicine HealthView portal (HVP). The HVP allows patients to manage details of their appointment scheduling and provides automated email appointment reminders in addition to the telephone and mail reminders that all patients receive.
Our objective was to test whether portal enrollment with an email reminder functionality is significantly related to decreases in rates of appointment “no-shows,” which are known to impair clinic operational efficiency.
Appointment activity during a 1-year period was examined for all patients attending one of seven Duke Medicine clinics. Patients were categorized as portal enrollees or as nonusers either by their status at time of appointment or at the end of the 1-year period. Demographic characteristics and no-show rates among these groups were compared. A binomial logistic regression model was constructed to measure the adjusted impact of HVP enrollment on no-show rates, given confounding factors. To demonstrate the effect of HVP use over time, monthly no-show rates were calculated for patient appointment keeping and contrasted between preportal and postportal deployment periods.
Across seven clinics, 58,942 patients, 15.7% (9239/58,942) of whom were portal enrollees, scheduled 198,199 appointments with an overall no-show rate of 9.9% (19,668/198,199). We found that HVP enrollees were significantly more likely to be female, white, and privately insured compared with nonusers. Bivariate no-show rate differences between portal enrollment groups varied widely according to patient- and appointment-level attributes. Large reductions in no-show rates were seen among historically disadvantaged groups: Medicaid holders (OR = 2.04 for nonuser/enrollee, 5.6% difference, P < .001), uninsured patients (OR = 2.60, 12.8% difference, P < .001), and black patients (OR = 2.13, 8.0% difference, P < .001). After fitting a binomial logistic regression model for the outcome of appointment arrival, the adjusted odds of arrival increased 39.0% for portal enrollees relative to nonusers (OR = 1.39, 95% CI 1.22 - 1.57, P < .001). Analysis of monthly no-show rates over 2 years demonstrated that patients who registered for portal access and received three reminders of upcoming appointments (email, phone, and mail) had a 2.0% no-show rate reduction (P < .001), whereas patients who did not enroll and only received traditional phone and mail reminders saw no such reduction (P < .09).
Monthly no-show rates across all seven Duke Medicine clinics were significantly reduced among patients who registered for portal use, suggesting that in combination with an email reminder feature, this technology may have an important and beneficial effect on clinic operations.
PMCID: PMC3221371  PMID: 21616784
Reminder systems; Health Information Technology for Economic and Clinical Health Act; medical informatics applications
25.  Publets: clinical judgement on the web. 
The Internet is now a major channel for publishing medical research data and documents, including clinical practice guidelines. It is now possible to capture guidelines in a computer interpretable form opening up the capability of using the internet (and intra/extranets etc.) to deliver patient-specific advice and other services. A development lifecycle and technology for publishing and delivering services at the point of care ("publets") are described. As with all new technologies, however, these new methods entail risks as well as opportunities. The paper closes with a discussion of quality requirements and an argument that publets should include a safety case as an integral part of their content.
PMCID: PMC2243418  PMID: 11825176

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