Donald A.B. Lindberg, pioneer in biomedical and health informatics: His involvement in creating professional organizations.

Among the many contributions of Donald A.B. Lindberg was his work on behalf of a variety or professional organizations in the field of biomedical and health informatics. These began during his early days at the University of Missouri and continued throughout his 30 years at the National Library of Medicine. This chapter summarizes that work, which occurred both through his personal efforts and through the impact of the NLM under his leadership. Examples include his role in the development of organizations themselves (e.g., the International Medical Informatics Association, the American College of Medical Informatics, and the American Medical Informatics Association) and also his contributions to the professional scientific meetings that have advanced the field (e.g., the Symposium on Computer Applications in Medical Care, MEDINFO, and the AMIA Annual Symposium).

Donald A.B. Lindberg, Pioneer in Biomedical and Health Informatics: His Involvement in Creating Professional Organizations.

Among the many contributions of Donald A.B. Lindberg was his work on behalf of a variety or professional organizations in the field of biomedical and health informatics. These began during his early days at the University of Missouri and continued throughout his 30 years at the National Library of Medicine. This chapter summarizes that work, which occurred both through his personal efforts and through the impact of the NLM under his leadership. Examples include his role in the development of organizations themselves (e.g., the International Medical Informatics Association, the American College of Medical Informatics, and the American Medical Informatics Association) and also his contributions to the professional scientific meetings that have advanced the field (e.g., the Symposium on Computer Applications in Medical Care, MEDINFO, and the AMIA Annual Symposium).

Accessing Reliable Health Information on the Web: A Review of the HON Approach.

Accessing online health content of high quality and reliability presents challenges. Laypersons cannot easily differentiate trustworthy content from misinformed or manipulated content. This article describes complementary approaches for members of the general public and health professionals to find trustworthy content with as little bias as possible. These include the Khresmoi health search engine (K4E), the Health On the Net Code of Conduct (HONcode) and health trust indicator Web browser extensions.

Health On the Net's 20 Years of Transparent and Reliable Health Information.

The Health On the Net Foundation (HON) was born in 1996, during the beginning of the World Wide Web, from a collective decision by health specialists, led by the late Jean-Raoul Scherrer, who anticipated the need for online trustworthy health information. Because the Internet is a free space that everyone shares, a search for quality information is like a shot in the dark: neither will reliably hit their target. Thus, HON was created to promote deployment of useful and reliable online health information, and to enable its appropriate and efficient use. Two decades on, HON is the oldest and most valued quality marker for online health information. The organization has maintained its reputation through dynamic measures, innovative endeavors and dedication to upholding key values and goals. This paper provides an overview of the HON Foundation, and its activities, challenges, and achievements over the years.

Discussion of "Computational Electrocardiography: Revisiting Holter ECG Monitoring".

This article is part of a For-Discussion-Section of Methods of Information in Medicine about the paper "Computational Electrocardiography: Revisiting Holter ECG Monitoring" written by Thomas M. Deserno and Nikolaus Marx. It is introduced by an editorial. This article contains the combined commentaries invited to independently comment on the paper of Deserno and Marx. In subsequent issues the discussion can continue through letters to the editor.

Impact on quality of life of a telemedicine system supporting head and neck cancer patients: a controlled trial during the postoperative period at home.

OBJECTIVES: Telemedicine applications carry the potential to enhance the quality of life of patients, but studies evaluating telemedicine applications are still scarce. The evidence regarding the effectiveness of telemedicine is limited and not yet conclusive. This study investigated whether telemedicine could be beneficial to the quality of life of cancer patients. DESIGN AND MEASUREMENTS: Between 1999 and 2002, we conducted a prospective controlled trial evaluating the effects of a telemedicine application on the quality of life of patients with cancer involving the head and neck, using quality of life questionnaires that covered 22 quality of life parameters. All patients had undergone surgery for head and neck cancer at the Erasmus MC, a tertiary university hospital in The Netherlands. Patients in the intervention group were given access to an electronic health information support system for a period of six weeks, starting at discharge from the hospital. RESULTS: In total, we included 145 patients in the control group and 39 in the intervention group. At 6 weeks, the end of the intervention, the intervention group had significantly improved QoL in 5 of the 22 studied parameters. Only one of these five quality of life parameters remained significantly different at 12 weeks. CONCLUSIONS: This study adds to the sparse evidence that telemedicine may be beneficial for the quality of life of cancer patients.

The young person's guide to biomedical informatics.

In a retrospective review, a parallel is drawn between the challenges by which a research department in biomedical informatics is confronted and those of a symphony orchestra. In both areas, different disciplines and different groups of instruments can be discerned. The importance of mastering one's instrument and the harmony between the team members is stressed. The conductor has to stimulate the individual players so that they can all have a successful career. Competition between orchestras and performance assessments determine survival and success. A record of refereed publications is crucial for continued existence. Conclusions are that biomedical informatics is typically multidisciplinary, that hypotheses underlying research should be carefully formulated, that the time from research to application may easily take 20 years or more, that mutual trust and knowing each other's competences is essential for success, that a good leader gives enough room to all team members to develop their careers, and that the outcomes of assessment studies are related to the quality of publications.

Databases for knowledge discovery. Examples from biomedicine and health care.

Examples are given of the use of large research databases for knowledge discovery. Such databases are not only increasingly used for research in the 'hard' mathematics-based disciplines such as physics and engineering but also in more 'soft' disciplines, such as sociology, psychology and, in general, the humanities. In between the 'hard' and the 'soft' disciplines lie disciplines such as biomedicine and health care, from which we have selected our illustrations. This latter area can be subdivided into: (1) fundamental biomedical research, related to the 'hard' scientific approach; (2) clinical research, using both 'hard' and 'soft' data and (3) population-based research, which can be subdivided into prospective and retrospective research. The examples that we shall offer are representative for using computers in scientific research in general, but in medical and health informatics in particular.

Knowledge for medicine and health care--laudation at the occasion of the honorary doctorate bestowed to Donald A. B. Lindberg by UMIT, University for Health Sciences, Medical Informatics and Technology in Innsbruck, Tyrol, Austria.

Dr. Donald A. B. Lindberg, Director of the U.S. National Library of Medicine, received an honorary doctorate from UMIT, the University for Health Sciences, Medical Informatics and Technology in Innsbruck, Tyrol. The celebration took place on September 28, 2004 at an academic event during a conference of the Austrian, German, and Swiss Societies of Medical Informatics, GMDS2004. Dr. Lindberg has been a pioneer in the field of computers in health care from the early 1960s onwards. In 1984 he became the Director of the National Library of Medicine in Bethesda, the world's largest fully computerized biomedical library. Dr. Lindberg has been involved in the early activities of the International Medical Informatics Association (IMIA), among others being the chair of the Organizing Committee for MEDINFO 86 in Washington D.C. He was elected the first president of the American Medical Informatics Association (AMIA), and served as an editor of Methods of Information in Medicine.

Involving the patient: a prospective study on use, appreciation and effectiveness of an information system in head and neck cancer care.

OBJECTIVE: To determine use, appreciation and effectiveness of an electronic health information support system in head and neck (H&N) cancer care. DESIGN: A prospective evaluation study. The evaluated system has four different functions: (1) communication amongst health care providers and between health care providers and patients, (2) information for health care providers and patients, (3) contact with fellow sufferers and (4) monitoring of discharged patients by means of electronic questionnaires. Evaluation of the system was done both objectively using automatically created log files and stored messages, and subjectively by using paper questionnaires from patients and general practitioners (GPs). SETTING: Department of Otorhinolaryngology and Head and Neck Surgery of a tertiary health care centre in the Netherlands. The system was put at patients' disposal for a period of 6 weeks following discharge from the hospital after surgery for H&N cancer, and was additional to standard care. PARTICIPANTS: Head and neck cancer patients, hospital physicians, members of a hospital-based support team, GPs, district nurses and speech therapists. MAIN OUTCOME MEASURES: Actual use of the system by patients and health care providers. Patients' appreciation for each of the system's four different functions. GPs' appreciation for the system. Capability to detect potential patient problems with the system. RESULTS: The system was used by 36 H&N cancer patients, 10 hospital physicians, 2 members of the support team, 8 GPs, 2 district nurses and 2 speech therapists. The total number of patient-sessions was 982: an average of 27.3 sessions per patient during the 6 weeks study period. In total, 456 monitoring questionnaires were completed. The support team in hospital responded with 231 actions. In 16 cases, an extra appointment was made for a patient with the hospital physician. Out of these cases, immediate action was considered necessary eight times. Patients appreciated the system highly, rating it with an average score of 8.0 on a 10-point scale. All patients used the monitoring function, and rated 'monitoring' with a mean score of 8.0 on a 10-point scale. Least used and appreciated was the 'contact with fellow sufferers' function. Only 8 out of possible 36 GPs used the system, rating it with an average of 5.6 on a 10-point scale. CONCLUSIONS: The electronic health information support system was used intensively and highly appreciated by H&N cancer patients. The system enabled the early detection of occurring health problems that required direct intervention. ICT can play an additional role in the management of patients, also in a relatively elderly and computer illiterate patient population.

Physical activity, dipping and haemodynamics.

OBJECTIVE: To determine the effect of physical activity on diurnal blood pressure (BP) and haemodynamic variation. METHODS: Ambulatory measurements were performed during 24 h in 36 subjects (18 hypertensive, 13 male), aged 49.7 +/- 13.5 years. BP was recorded in the brachial artery. Physical activity and posture were measured with five acceleration sensors. RESULTS: Of the subjects 50% were dippers (nocturnal decrease in systolic or diastolic BP >/= 10%). Dippers and non-dippers had similar daytime BP, daytime, night-time, and day-night difference in physical activity, subjective sleep quality, and nocturnal cardiac output decrease (14.9 +/- 9.6 and 16.0 +/- 5.9%). In non-dippers vascular resistance increased from day to night by 9.7 +/- 8.3%, while it remained unchanged (-1.0 +/- 13.9%) in dippers. Day-night changes in heart rate and cardiac output were correlated with day-night changes in physical activity (r = 0.39 and 0.43), whereas day-night changes in systolic BP were correlated with night-time activity (r = -0.34). By selection of the active (i.e. walking) and inactive (i.e. not walking) periods during the day, we showed that physical activity has a large potential effect on dipping status and diurnal haemodynamic variation underlying BP variation. Depending on the BP taken (systolic or diastolic, respectively) the proportion of dippers increased to 81% or decreased to 25% if only the walking period was considered, whereas it decreased to 36% or increased to 53% if only the non-walking period was considered. CONCLUSIONS: Non-dippers differ from dippers by an increase of vascular resistance during the night. The degree of physical activity normally encountered during ambulatory monitoring has little influence on the diurnal BP profile or dipping status, but significantly influences underlying haemodynamics. Related to the different effects of posture and activity on systolic and diastolic BP, dipping classification may vary with the BP index taken.

Reconstruction of the 12-lead electrocardiogram from reduced lead sets.

In clinical practice, continuous recording of all leads of the 12-lead electrocardiogram (ECG) is often not possible. We wanted to assess how well absent, noisy, or defective leads can be reconstructed from different lead subsets and how well lead reconstruction performs over time. A data set of 234 24-hour ECG recordings was divided into an equally sized training and test set. Precordial leads were systematically removed, and for all lead subsets including both limb leads and at least one precordial lead, the absent leads were reconstructed using general and patient-specific reconstruction templates. Reconstruction performance was measured by correlation between the original and reconstructed leads over the QRS and T waves, by average and maximum absolute ST differences, and by agreement when a clinical decision rule was applied. Reconstruction performance over time was evaluated at baseline, at 20 minutes, and 1, 6, 12 and 24 hours after the start of each recording. Reconstruction accuracy was high (correlation > or =0.932, average ST difference < or =30 microV, agreement > or =94.9%) with general reconstruction for lead sets with 1 or 2 precordial leads removed but was less satisfactory when more leads were missing. Patient-specific reconstruction performed well when up to 4 precordial leads were removed (correlation > or =0.967, average ST difference < or =26 microV, agreement > or =95.7%). Patient-specific reconstruction performance initially slightly decreased and then stabilized over time but remained much better than general reconstruction after 24 hours. Accurate reconstruction of the 12-lead ECG from lead subsets is possible over time. General reconstruction allows reconstruction of 1 or 2 precordial leads, whereas up to 4 leads can be reconstructed well using patient-specific reconstruction.

Reproducibility of intra-arterial ambulatory blood pressure: effects of physical activity and posture.

OBJECTIVE: To examine the effects of physical activity, body posture and sleep quality on the reproducibility of continuous ambulatory blood pressure monitoring. METHODS: Measurements were performed in 35 subjects (18 hypertensive, 11 male), mean +/- standard deviation age 49 +/- 13 years. Blood pressure (BP) was measured in the brachial artery, and beat-to-beat values of systolic blood pressure (SBP), diastolic blood pressure (DBP), mean arterial pressure and heart rate (HR) were computed. Physical activity and posture were continuously measured with five accelerometers. Subjective quality of sleep was assessed with a questionnaire. Reproducibility was expressed as an intraclass correlation coefficient and as the standard deviation of the within-subject differences. RESULTS: Posture and activity significantly influenced BP and HR. From lying to sitting, the SBP, DBP and HR increased 6 mmHg, 8 mmHg and 8 beats/min, respectively. From sitting to standing these respective increases were 4 mmHg, 2 mmHg and 13 beats/min. A further rise in activity (from standing to moving generally or walking) increased the SBP by 7 mmHg and the HR by 7 beats/min, and decreased the DBP by 8 mmHg. For daytime SBP, DBP and HR, the intraclass correlation coefficient (standard deviation of the within-subject differences) values were 0.93 (7.2 mmHg), 0.94 (3.8 mmHg) and 0.90 (4.1 beats/min). For night-time these respective values were 0.98 (4.4 mmHg), 0.97 (2.5 mmHg) and 0.96 (2.2 beats/min). Correction for physical activity level and posture hardly improved the reproducibility of daytime BP and HR. Reproducibility of night-time BP and HR was not improved by correction for physical activity, supine position or self-reported sleep quality. CONCLUSIONS: Within-subject differences between ambulatory BP recordings cannot be explained by differences in physical activity and body posture.

Haemodynamic responses to physical activity and body posture during everyday life.

OBJECTIVE: To determine the relationships between body posture and physical activity and systemic haemodynamics during everyday life. METHODS: Continuous measurements were performed in 34 subjects (16 hypertensive, 12 male), aged 49 +/- 13 (mean +/- standard deviation) years. Blood pressure (BP) was measured in the brachial artery. Physical activity and posture were measured with four accelerometers. Beat-to-beat values of systolic blood pressure (SBP), diastolic blood pressure (DBP), heart rate (HR), stroke volume (SV), cardiac output (CO) and systemic vascular resistance (SVR) were computed from the pressure waveforms. Multiple correlation coefficients (R) between activity and haemodynamic variables were computed and responses to physical activity were estimated with random regression models. RESULTS: The overall percentages of variance in SBP, DBP, HR, SV, CO and SVR explained by activity (R2) were 32, 28, 56, 44, 74, and 45%, respectively. The SBP and HR increased linearly with increasing levels of activity (19 mmHg and 30 beats/min when activity increased 90 percentiles). Other variables showed parabolic relationships. The initial decrease in SV and CO (14 ml and 0.5 l/min) and increase in DBP and SVR (9 mmHg and 2 mmHg min/l) with increasing levels of activity coincided with changes in posture (lying-sitting-standing). The subsequent SV and CO increase (23 ml and 3.7 l/min) and DBP and SVR decrease (8 mmHg and 8 mmHg min/l) coincided with changes in activity (standing-moving generally-walking). CONCLUSIONS: Our findings show that normal daily posture and activity are only moderate determinants of BP, but main determinants of HR and CO variation.

Developing and evaluating criteria to help reviewers of biomedical informatics manuscripts.

Peer-reviewed publication of scientific research results represents the most important means of their communication. The authors have annually reviewed a large heterogeneous set of papers to produce the International Medical Informatics Association (IMIA) Yearbook of Medical Informatics. To support an objective and high-quality review process, the authors attempted to provide reviewers with a set of refined quality criteria, comprised of 80 general criteria and an additional 60 criteria for specific types of manuscripts. Authors conducted a randomized controlled trial, with 18 reviewers, to evaluate application of the refined criteria on review outcomes. Whereas the trial found that reviewers applying the criteria graded papers more strictly (lower overall scores), and that junior reviewers appreciated the availability of the criteria, there was no overall change in the interrater variability in reviewing the manuscripts. The authors describe their experience as a "case report" and provide a reference to the refined quality review criteria without claiming that the criteria represent a validated instrument for quantitative quality measurement.

An information system to support the care for head and neck cancer patients.

The potential of Information and communication technology (ICT) as a method to improve care is widely acknowledged. However, before ICT can be used in a specific patient population, the needs of that population must first be made explicit. In this paper we aim to explore the feasibility and functionality of an electronic information system to support head and neck (H&N) cancer care. We describe communication and information bottlenecks in supportive care for H&N cancer patients. These bottlenecks were used to determine the functionality of an electronic health information support system. We discern three perspectives of problems in H&N cancer care: lacking communication among professionals, lacking information about the disease and its treatment, and lacking supportive measures to reduce uncertainty and fear in patients. To support care, an information support system can facilitate (1). communication among all professionals involved and between professionals and patients, (2). professionals' and patients' access to information, (3). contact with fellow sufferers, and (4). early detection of patient problems by means of monitoring. Based on these analyses we subsequently built such a system and established a setting for evaluation. Information and communication technology can be tailored to address the communication and information bottlenecks in supportive H&N cancer care. As we aim to investigate whether care for H&N cancer patients may benefit from ICT, we are currently performing a clinical evaluation study.

Determinants of ambulatory blood pressure response to physical activity.

OBJECTIVES: Previous studies reported that the association between physical activity, measured with a wrist-worn accelerometer, and ambulatory blood pressure is rather weak and that the inter-individual variation in the degree of association is high. The aim of the present study was to quantify the responses of ambulatory blood pressure (BP) and heart rate (HR) to physical activity, and to determine the effect of age, gender, body mass index, mean BP and HR level and the use of antihypertensive medication on these responses. PATIENTS AND METHODS: Twenty-seven subjects (24 hypertensive) underwent 24-h ambulatory monitoring of BP, HR and physical activity. Physical activity was measured with four accelerometers mounted on the trunk and legs. The daytime BP and HR responses to physical activity and the possible modulating effects of the various subject characteristics on these responses were estimated with Random Regression Models. RESULTS: Increasing physical activity from a very low level (e.g. watching television) to a moderate level (e.g. shopping) caused an average response of systolic blood pressure (SBP) of 11.6 mmHg, of diastolic blood pressure (DBP) of 7.0 mmHg and of HR of 16.1 beats/min. The SBP response to activity was about 2 mmHg larger for the overweight subjects than for subjects with normal weight, and the SBP, DBP and HR responses increased about 0.8 mmHg, 0.6 mmHg and 0.7 beats/min, respectively, with every 10 years increase in age. The between-subjects variances in estimated responses were low and were almost completely explained by differences in overweight and age between subjects. The average within-subject variances, however, were high. CONCLUSIONS: Normal daily physical activity explains only a small part of the BP and HR variability. The BP and HR responses to activity are modestly affected by age. Overweight has a small effect on the SBP response to activity.

Compliance of general practitioners with a guideline-based decision support system for ordering blood tests.

BACKGROUND: Guidelines are viewed as a mechanism for disseminating a rapidly increasing body of knowledge. We determined the compliance of Dutch general practitioners with the recommendations for blood test ordering as defined in the guidelines of the Dutch College of General Practitioners. METHODS: We performed an audit of guideline compliance over a 12-month period (March 1996 through February 1997). In an observational study, a guideline-based decision support system for blood test ordering, BloodLink, was integrated with the electronic patient records of 31 general practitioners practicing in 23 practices (16 solo). BloodLink followed the guidelines of the Dutch College of General Practitioners. We determined compliance by comparing the recommendations for test ordering with the test(s) actually ordered. Compliance was expressed as the percentage of order forms that followed the recommendations for test ordering. RESULTS: Of 12 668 orders generated, 9091 (71%) used the decision-support software rather than the paper order forms. Twelve indications accounted for >80% of the 7346 order forms that selected a testing indication in BloodLink. The most frequently used indication for test ordering was "vague complaints" (2209 order forms; 30.1%). Of the 7346 order forms, 39% were compliant. The most frequent type of noncompliance was the addition of tests. Six of the 12 tests most frequently added to the order forms were supported by revisions of guidelines that occurred within 3 years after the intervention period. CONCLUSIONS: In general practice, noncompliance with guidelines is predominantly caused by adding tests. We conclude that noncompliance with a guideline seems to be partly caused by practitioners applying new medical insight before it is incorporated in a revision of that guideline.