Research and applications: A question of trust: user-centered design requirements for an informatics intervention to promote the sexual health of African-American youth

Objective

We investigated the user requirements of African-American youth (aged 14–24 years) to inform the design of a culturally appropriate, network-based informatics intervention for the prevention of HIV and other sexually transmitted infections (STI).

Materials and Methods

We conducted 10 focus groups with 75 African-American youth from a city with high HIV/STI prevalence. Data analyses involved coding using qualitative content analysis procedures and memo writing.

Results

Unexpectedly, the majority of participants’ design recommendations concerned trust. Youth expressed distrust towards people and groups, which was amplified within the context of information technology-mediated interactions about HIV/STI. Participants expressed distrust in the reliability of condoms and the accuracy of HIV tests. They questioned the benevolence of many institutions, and some rejected authoritative HIV/STI information. Therefore, reputational information, including rumor, influenced HIV/STI-related decision making. Participants’ design requirements also focused on trust-related concerns. Accordingly, we developed a novel trust-centered design framework to guide intervention design.

Discussion

Current approaches to online trust for health informatics do not consider group-level trusting patterns. Yet, trust was the central intervention-relevant issue among African-American youth, suggesting an important focus for culturally informed design. Our design framework incorporates: intervention objectives (eg, network embeddedness, participation); functional specifications (eg, decision support, collective action, credible question and answer services); and interaction design (eg, member control, offline network linkages, optional anonymity).

Conclusions

Trust is a critical focus for HIV/STI informatics interventions for young African Americans. Our design framework offers practical, culturally relevant, and systematic guidance to designers to reach this underserved group better.     

Systematic review and evaluation of web-accessible tools for management of diabetes and related cardiovascular risk factors by patients and healthcare providers

Objective

To identify and evaluate the effectiveness, clinical usefulness, sustainability, and usability of web-compatible diabetes-related tools.

Data sources

Medline, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, world wide web.

Study selection

Studies were included if they described an electronic audiovisual tool used as a means to educate patients, care givers, or clinicians about diabetes management and assessed a psychological, behavioral, or clinical outcome.

Data extraction

Study abstraction and evaluation for clinical usefulness, sustainability, and usability were performed by two independent reviewers.

Results

Of 12616 citations and 1541 full-text articles reviewed, 57 studies met inclusion criteria. Forty studies used experimental designs (25 randomized controlled trials, one controlled clinical trial, 14 before–after studies), and 17 used observational designs. Methodological quality and ratings for clinical usefulness and sustainability were variable, and there was a high prevalence of usability errors. Tools showed moderate but inconsistent effects on a variety of psychological and clinical outcomes including HbA1c and weight. Meta-regression of adequately reported studies (12 studies, 2731 participants) demonstrated that, although the interventions studied resulted in positive outcomes, this was not moderated by clinical usefulness nor usability.

Limitation

This review is limited by the number of accessible tools, exclusion of tools for mobile devices, study quality, and the use of non-validated scales.

Conclusion

Few tools were identified that met our criteria for effectiveness, usefulness, sustainability, and usability. Priority areas include identifying strategies to minimize website attrition and enabling patients and clinicians to make informed decisions about website choice by encouraging reporting of website quality indicators.     

Commercial off-the-shelf consumer health informatics interventions: recommendations for their design,evaluation and redesign

Objective

The goal of this paper is to describe the successful application of a use case-based evaluation approach to guide the effective design, evaluation and redesign of inexpensive, commercial, off-the-shelf consumer health informatics (CHI) interventions.

Design

Researchers developed four CHI intervention use cases representing two distinct patient populations (patients with diabetes with high blood pressure, post-bariatric surgery patients), two commercial off-the-shelf CHI applications (Microsoft HealthVault, Google Health), and related devices (blood pressure monitor, pedometer, weight scale). Three patient proxies tested each intervention for 10 days.

Measurements

The patient proxies recorded their challenges while completing use case tasks, rating the severity of each challenge based on how much it hindered their use of the intervention. Two independent evaluators categorized the challenges by human factors domain (physical, cognitive, macroergonomic).

Results

The use case-based approach resulted in the identification of 122 challenges, with 12% physical, 50% cognitive and 38% macroergonomic. Thirty-nine challenges (32%) were at least moderately severe. Nine of 22 use case tasks (41%) accounted for 72% of the challenges.

Limitations

The study used two patient proxies and addressed two specific patient populations and low-cost, off-the-shelf CHI interventions, which may not perfectly generalize to a larger number of proxies, actual patient populations, or other CHI interventions.

Conclusion

CHI designers can employ the use case-based evaluation approach to assess the fit of a CHI intervention with patients'' health work, in the context of their daily activities and environment, which would be difficult or impossible to evaluate by laboratory-based studies.     

Personal health records: a randomized trial of effects on elder medication safety

Purpose

To examine the impact of a personal health record (PHR) on medication-use safety among older adults.

Background

Online PHRs have potential as tools to manage health information. We know little about how to make PHRs accessible for older adults and what effects this will have.

Methods

A PHR was designed and pretested with older adults and tested in a 6-month randomized controlled trial. After completing mailed baseline questionnaires, eligible computer users aged 65 and over were randomized 3:1 to be given access to a PHR (n=802) or serve as a standard care control group (n=273). Follow-up questionnaires measured change from baseline medication use, medication reconciliation behaviors, and medication management problems.

Results

Older adults were interested in keeping track of their health and medication information. A majority (55.2%) logged into the PHR and used it, but only 16.1% used it frequently. At follow-up, those randomized to the PHR group were significantly less likely to use multiple non-steroidal anti-inflammatory drugs—the most common warning generated by the system (viewed by 23% of participants). Compared with low/non-users, high users reported significantly more changes in medication use and improved medication reconciliation behaviors, and recognized significantly more side effects, but there was no difference in use of inappropriate medications or adherence measures.

Conclusions

PHRs can engage older adults for better medication self-management; however, features that motivate continued use will be needed. Longer-term studies of continued users will be required to evaluate the impact of these changes in behavior on patient health outcomes.     

Impact of a web-based personally controlled health management system on influenza vaccination and health services utilization rates: a randomized controlled trial

Objective

To assess the impact of a web-based personally controlled health management system (PCHMS) on the uptake of seasonal influenza vaccine and primary care service utilization among university students and staff.

Materials and methods

A PCHMS called Healthy.me was developed and evaluated in a 2010 CONSORT-compliant two-group (6-month waitlist vs PCHMS) parallel randomized controlled trial (RCT) (allocation ratio 1:1). The PCHMS integrated an untethered personal health record with consumer care pathways, social forums, and messaging links with a health service provider.

Results

742 university students and staff met inclusion criteria and were randomized to a 6-month waitlist (n=372) or the PCHMS (n=370). Amongst the 470 participants eligible for primary analysis, PCHMS users were 6.7% (95% CI: 1.46 to 12.30) more likely than the waitlist to receive an influenza vaccine (waitlist: 4.9% (12/246, 95% CI 2.8 to 8.3) vs PCHMS: 11.6% (26/224, 95% CI 8.0 to 16.5); χ²=7.1, p=0.008). PCHMS participants were also 11.6% (95% CI 3.6 to 19.5) more likely to visit the health service provider (waitlist: 17.9% (44/246, 95% CI 13.6 to 23.2) vs PCHMS: 29.5% (66/224, 95% CI: 23.9 to 35.7); χ²=8.8, p=0.003). A dose–response effect was detected, where greater use of the PCHMS was associated with higher rates of vaccination (p=0.001) and health service provider visits (p=0.003).

Discussion

PCHMS can significantly increase consumer participation in preventive health activities, such as influenza vaccination.

Conclusions

Integrating a PCHMS into routine health service delivery systems appears to be an effective mechanism for enhancing consumer engagement in preventive health measures.

Trial registration

Australian New Zealand Clinical Trials Registry ACTRN12610000386033. http://www.anzctr.org.au/trial_view.aspx?id=335463.     

The Primary Care Research Object Model (PCROM): A Computable Information Model for Practice-based Primary Care Research

Objectives

Chronic disease prevalence and burden is growing, as is the need for applicable large community-based clinical trials of potential interventions. To support the development of clinical trial management systems for such trials, a community-based primary care research information model is needed. We analyzed the requirements of trials in this environment, and constructed an information model to drive development of systems supporting trial design, execution, and analysis. We anticipate that this model will contribute to a deeper understanding of all the dimensions of clinical research and that it will be integrated with other clinical research modeling efforts, such as the Biomedical Research Integrated Domain Group (BRIDG) model, to complement and expand on current domain models.

Design

We used unified modeling language modeling to develop use cases, activity diagrams, and a class (object) model to capture components of research in this setting. The initial primary care research object model (PCROM) scope was the performance of a randomized clinical trial (RCT). It was validated by domain experts worldwide, and underwent a detailed comparison with the BRIDG clinical research reference model.

Results

We present a class diagram and associated definitions that capture the components of a primary care RCT. Forty-five percent of PCROM objects were mapped to BRIDG, 37% differed in class and/or subclass assignment, and 18% did not map.

Conclusion

The PCROM represents an important link between existing research reference models and the real-world design and implementation of systems for managing practice-based primary care clinical trials. Although the high degree of correspondence between PCROM and existing research reference models provides evidence for validity and comprehensiveness, existing models require object extensions and modifications to serve primary care research.     

Research and applications: The intended and unintended consequences of communication systems on general internal medicine inpatient care delivery: a prospective observational case study of five teaching hospitals

Background

Effective clinical communication is critical to providing high-quality patient care. Hospitals have used different types of interventions to improve communication between care teams, but there have been few studies of their effectiveness.

Objectives

To describe the effects of different communication interventions and their problems.

Design

Prospective observational case study using a mixed methods approach of quantitative and qualitative methods.

Setting

General internal medicine (GIM) inpatient wards at five tertiary care academic teaching hospitals.

Participants

Clinicians consisting of residents, attending physicians, nurses, and allied health (AH) staff working on the GIM wards.

Methods

Ethnographic methods and interviews with clinical staff (doctors, nurses, medical students, and AH professionals) were conducted over a 16-month period from 2009 to 2010.

Results

We identified four categories that described the intended and unintended consequences of communication interventions: impacts on senders, receivers, interprofessional collaboration, and the use of informal communication processes. The use of alphanumeric pagers, smartphones, and web-based communication systems had positive effects for senders and receivers, but unintended consequences were seen with all interventions in all four categories.

Conclusions

Interventions that aimed to improve clinical communications solved some but not all problems, and unintended effects were seen with all systems.     

Epilepsy and seizure ontology: towards an epilepsy informatics infrastructure for clinical research and patient care

Objective

Epilepsy encompasses an extensive array of clinical and research subdomains, many of which emphasize multi-modal physiological measurements such as electroencephalography and neuroimaging. The integration of structured, unstructured, and signal data into a coherent structure for patient care as well as clinical research requires an effective informatics infrastructure that is underpinned by a formal domain ontology.

Methods

We have developed an epilepsy and seizure ontology (EpSO) using a four-dimensional epilepsy classification system that integrates the latest International League Against Epilepsy terminology recommendations and National Institute of Neurological Disorders and Stroke (NINDS) common data elements. It imports concepts from existing ontologies, including the Neural ElectroMagnetic Ontologies, and uses formal concept analysis to create a taxonomy of epilepsy syndromes based on their seizure semiology and anatomical location.

Results

EpSO is used in a suite of informatics tools for (a) patient data entry, (b) epilepsy focused clinical free text processing, and (c) patient cohort identification as part of the multi-center NINDS-funded study on sudden unexpected death in epilepsy. EpSO is available for download at http://prism.case.edu/prism/index.php/EpilepsyOntology.

Discussion

An epilepsy ontology consortium is being created for community-driven extension, review, and adoption of EpSO. We are in the process of submitting EpSO to the BioPortal repository.

Conclusions

EpSO plays a critical role in informatics tools for epilepsy patient care and multi-center clinical research.     

Crossing the Evidence Chasm: Building Evidence Bridges from Process Changes to Clinical Outcomes

Objective

Although demand for information about the effectiveness and efficiency of health care information technology grows, large-scale resource-intensive randomized controlled trials of health care information technology remain impractical. New methods are needed to translate more commonly available clinical process measures into potential impact on clinical outcomes.

Design

The authors propose a method for building mathematical models based on published evidence that provides an evidence bridge between process changes and resulting clinical outcomes. This method combines tools from systematic review, influence diagramming, and health care simulations.

Measurements

The authors apply this method to create an evidence bridge between retinopathy screening rates and incidence of blindness in diabetic patients.

Results

The resulting model uses changes in eye examination rates and other evidence-based population parameters to generate clinical outcomes and costs in a Markov model.

Conclusion

This method may serve as an alternative to more expensive study designs and provide useful estimates of the impact of health care information technology on clinical outcomes through changes in clinical process measures.The announcement ¹ and reaffirmation ² of the federal commitment to advancing health care information technology (HIT) has been further bolstered by events in the Gulf South after the recent hurricane seasons. ³ This commitment creates both opportunities and challenges for health services and clinical informatics researchers. Clinicians, policy makers, lobbyists, economists, and the media demand evidence-based recommendations for HIT. To make decisions that will affect millions of lives and billions of dollars, decision makers require more than efficacy studies—they require results that indicate both the effectiveness and the efficiency of HIT solutions. The ability of the informatics research community to respond to this need with useful and credible evidence will determine our relevance to the debate.Many evaluations of health services focus primarily on process measures. ⁴ For example, there are numerous studies in the disease management literature that report the impact of technology on the rate of annual eye or foot examinations for diabetic patients. ^5–14 However, there are few published studies that evaluate HIT’s impact on the rate of blindness or amputations. Despite the increasing demand for credible clinical outcomes evidence, many studies in HIT lack the power to detect changes in clinical outcomes, a product of limited time and resources. ¹⁵ In addition, the rapid evolution of new technologies makes the study subject itself, HIT, a moving target. By the time a large-scale trial is completed, the state of the art will have moved on. ¹⁶ Evaluations in HIT therefore tend to be relatively brief studies comparing convenient measures, more often made in a laboratory environment, or potentially idiosyncratic academic environments, than in real-world clinical settings, thus limiting generalizability. These studies would be classified by Fuchs and Garber ¹⁷ as stage 1 and 2 technology assessments—evaluating the performance of the technology itself and perhaps the impact of the technology on processes of care. However, the demand for outcomes evidence mandates that future HIT research be at the level of stage 3 technology assessments, in which comprehensive clinical, economic, and social outcomes are evaluated to determine both the effectiveness and efficiency of the intervention. The importance of linking process measures to clinical outcomes has been previously described, but progress has been limited. ¹⁸ We propose an approach to maximize the ability of HIT evaluation research to report clinical and financial outcomes.     

Standards for reporting randomized controlled trials in medical informatics: a systematic review of CONSORT adherence in RCTs on clinical decision support

Introduction

The Consolidated Standards for Reporting Trials (CONSORT) were published to standardize reporting and improve the quality of clinical trials. The objective of this study is to assess CONSORT adherence in randomized clinical trials (RCT) of disease specific clinical decision support (CDS).

Methods

A systematic search was conducted of the Medline, EMBASE, and Cochrane databases. RCTs on CDS were assessed against CONSORT guidelines and the Jadad score.

Result

32 of 3784 papers identified in the primary search were included in the final review. 181 702 patients and 7315 physicians participated in the selected trials. Most trials were performed in primary care (22), including 897 general practitioner offices. RCTs assessing CDS for asthma (4), diabetes (4), and hyperlipidemia (3) were the most common. Thirteen CDS systems (40%) were implemented in electronic medical records, and 14 (43%) provided automatic alerts. CONSORT and Jadad scores were generally low; the mean CONSORT score was 30.75 (95% CI 27.0 to 34.5), median score 32, range 21–38. Fourteen trials (43%) did not clearly define the study objective, and 11 studies (34%) did not include a sample size calculation. Outcome measures were adequately identified and defined in 23 (71%) trials; adverse events or side effects were not reported in 20 trials (62%). Thirteen trials (40%) were of superior quality according to the Jadad score (≥3 points). Six trials (18%) reported on long-term implementation of CDS.

Conclusion

The overall quality of reporting RCTs was low. There is a need to develop standards for reporting RCTs in medical informatics.     

The effectiveness of a new generation of computerized drug alerts in reducing the risk of injury from drug side effects: a cluster randomized trial

Context

Computerized drug alerts for psychotropic drugs are expected to reduce fall-related injuries in older adults. However, physicians over-ride most alerts because they believe the benefit of the drugs exceeds the risk.

Objective

To determine whether computerized prescribing decision support with patient-specific risk estimates would increase physician response to psychotropic drug alerts and reduce injury risk in older people.

Design

Cluster randomized controlled trial of 81 family physicians and 5628 of their patients aged 65 and older who were prescribed psychotropic medication.

Intervention

Intervention physicians received information about patient-specific risk of injury computed at the time of each visit using statistical models of non-modifiable risk factors and psychotropic drug doses. Risk thermometers presented changes in absolute and relative risk with each change in drug treatment. Control physicians received commercial drug alerts.

Main outcome measures

Injury risk at the end of follow-up based on psychotropic drug doses and non-modifiable risk factors. Electronic health records and provincial insurance administrative data were used to measure outcomes.

Results

Mean patient age was 75.2 years. Baseline risk of injury was 3.94 per 100 patients per year. Intermediate-acting benzodiazepines (56.2%) were the most common psychotropic drug. Intervention physicians reviewed therapy in 83.3% of visits and modified therapy in 24.6%. The intervention reduced the risk of injury by 1.7 injuries per 1000 patients (95% CI 0.2/1000 to 3.2/1000; p=0.02). The effect of the intervention was greater for patients with higher baseline risks of injury (p<0.03).

Conclusion

Patient-specific risk estimates provide an effective method of reducing the risk of injury for high-risk older people.

Trial registration number

clinicaltrials.gov Identifier: NCT00818285.     

A personally controlled electronic health record for Australia

Objective

On July 1, 2012 Australia launched a personally controlled electronic health record (PCEHR) designed around the needs of consumers. Using a distributed model and leveraging key component national eHealth infrastructure, the PCEHR is designed to enable sharing of any health information about a patient with them and any other health practitioner involved in their care to whom the patient allows access. This paper discusses the consumer-facing part of the program.

Method

Design of the system was through stakeholder consultation and the development of detailed requirements, followed by clinical design assurance.

Results

Patients are able to access any posted information through a web-accessible ‘consumer portal.’ Within the portal they are able to assert access controls on all or part of their record. The portal includes areas for consumers to record their own personal information.

Discussion

The PCEHR has the potential to transform the ability of patients to actively engage in their own healthcare, and to enable the emerging partnership model of health and healthcare in medicine. The ability to access health information traditionally kept within the closed walls of institutions also raises challenges for the profession, both in the language clinicians choose and the ethical issues raised by the changed roles and responsibilities.

Conclusions

The PCEHR is aimed at connecting all participants and their interventions, and is intended to become a system-wide activity.     

Guided medication dosing for elderly emergency patients using real-time, computerized decision support

Objective

To evaluate the impact of a real-time computerized decision support tool in the emergency department that guides medication dosing for the elderly on physician ordering behavior and on adverse drug events (ADEs).

Design

A prospective controlled trial was conducted over 26 weeks. The status of the decision support tool alternated OFF (7/17/06–8/29/06), ON (8/29/06–10/10/06), OFF (10/10/06–11/28/06), and ON (11/28/06–1/16/07) in consecutive blocks during the study period. In patients ≥65 who were ordered certain benzodiazepines, opiates, non-steroidals, or sedative-hypnotics, the computer application either adjusted the dosing or suggested a different medication. Physicians could accept or reject recommendations.

Measurements

The primary outcome compared medication ordering consistent with recommendations during ON versus OFF periods. Secondary outcomes included the admission rate, emergency department length of stay for discharged patients, 10-fold dosing orders, use of a second drug to reverse the original medication, and rate of ADEs using previously validated explicit chart review.

Results

2398 orders were placed for 1407 patients over 1548 visits. The majority (49/53; 92.5%) of recommendations for alternate medications were declined. More orders were consistent with dosing recommendations during ON (403/1283; 31.4%) than OFF (256/1115; 23%) periods (p≤0.0001). 673 (43%) visits were reviewed for ADEs. The rate of ADEs was lower during ON (8/237; 3.4%) compared with OFF (31/436; 7.1%) periods (p=0.02). The remaining secondary outcomes showed no difference.

Limitations

Single institution study, retrospective chart review for ADEs.

Conclusion

Though overall agreement with recommendations was low, real-time computerized decision support resulted in greater acceptance of medication recommendations. Fewer ADEs were observed when computerized decision support was active.     

Improving personal health records for patient-centered care

Objective

To assess the patient-centeredness of personal health records (PHR) and offer recommendations for best practice guidelines.

Design

Semi-structured interviews were conducted in seven large early PHR adopter organizations in 2007. Organizations were purposively selected to represent a variety of US settings, including medium and large hospitals, ambulatory care facilities, insurers and health plans, government departments, and commercial sectors.

Measurements

Patient-centeredness was assessed against a framework of care that includes: (1) respect for patient values, preferences, and expressed needs; (2) information and education; (3) access to care; (4) emotional support to relieve fear and anxiety; (5) involvement of family and friends; (6) continuity and secure transition between healthcare providers; (7) physical comfort; (8) coordination of care. Within this framework we used evidence for patient preferences (where it exists) to compare existing PHR policies, and propose a best practice model.

Results

Most organizations enable many patient-centered functions such as data access for proxies and minors. No organization allows patient views of clinical progress notes, and turnaround times for PHR reporting of normal laboratory results can be up to 7 days.

Conclusion

Findings suggest patient-centeredness for personal health records can be improved, and recommendations are made for best practice guidelines.     

Sociotechnical challenges to developing technologies for patient access to health information exchange data

Background

Providing patients with access to their medical data is widely expected to help educate and empower them to manage their own health. Health information exchange (HIE) infrastructures could potentially help patients access records across multiple healthcare providers. We studied three HIE organizations as they developed portals to give consumers access to HIE data previously exchanged only among healthcare organizations.

Objective

To follow the development of new consumer portal technologies, and to identify barriers and facilitators to patient access to HIE data.

Methods

Semistructured interviews of 15 key informants over a 2-year period spanning the development and early implementation of three new projects, coded according to a sociotechnical framework.

Results

As the organizations tried to develop functionality that fully served the needs of both providers and patients, plans were altered by technical barriers (primarily related to data standardization) and cultural and legal issues surrounding data access. Organizational changes also played an important role in altering project plans. In all three cases, patient access to data was significantly scaled back from initial plans.

Conclusions

This prospective study revealed how sociotechnical factors previously identified as important in health information technology success and failure helped to shape the evolution of three novel consumer informatics projects. Barriers to providing patients with seamless access to their HIE data were multifactorial. Remedies will have to address technical, organizational, cultural, and other factors.     

Patient characteristics associated with venous thromboembolic events: a cohort study using pooled electronic health record data

Objective

To demonstrate the potential of de-identified clinical data from multiple healthcare systems using different electronic health records (EHR) to be efficiently used for very large retrospective cohort studies.

Materials and methods

Data of 959 030 patients, pooled from multiple different healthcare systems with distinct EHR, were obtained. Data were standardized and normalized using common ontologies, searchable through a HIPAA-compliant, patient de-identified web application (Explore; Explorys Inc). Patients were 26 years or older seen in multiple healthcare systems from 1999 to 2011 with data from EHR.

Results

Comparing obese, tall subjects with normal body mass index, short subjects, the venous thromboembolic events (VTE) OR was 1.83 (95% CI 1.76 to 1.91) for women and 1.21 (1.10 to 1.32) for men. Weight had more effect then height on VTE. Compared with Caucasian, Hispanic/Latino subjects had a much lower risk of VTE (female OR 0.47, 0.41 to 0.55; male OR 0.24, 0.20 to 0.28) and African-Americans a substantially higher risk (female OR 1.83, 1.76 to 1.91; male OR 1.58, 1.50 to 1.66). This 13-year retrospective study of almost one million patients was performed over approximately 125 h in 11 weeks, part time by the five authors.

Discussion

As research informatics tools develop and more clinical data become available in EHR, it is important to study and understand unique opportunities for clinical research informatics to transform the scale and resources needed to perform certain types of clinical research.

Conclusions

With the right clinical research informatics tools and EHR data, some types of very large cohort studies can be completed with minimal resources.     

Genetic data and electronic health records: a discussion of ethical,logistical and technological considerations

Objective

The completion of sequencing the human genome in 2003 has spurred the production and collection of genetic data at ever increasing rates. Genetic data obtained for clinical purposes, as is true for all results of clinical tests, are expected to be included in patients’ medical records. With this explosion of information, questions of what, when, where and how to incorporate genetic data into electronic health records (EHRs) have reached a critical point. In order to answer these questions fully, this paper addresses the ethical, logistical and technological issues involved in incorporating these data into EHRs.

Materials and methods

This paper reviews journal articles, government documents and websites relevant to the ethics, genetics and informatics domains as they pertain to EHRs.

Results and discussion

The authors explore concerns and tasks facing health information technology (HIT) developers at the intersection of ethics, genetics, and technology as applied to EHR development.

Conclusions

By ensuring the efficient and effective incorporation of genetic data into EHRs, HIT developers will play a key role in facilitating the delivery of personalized medicine.     

Research and applications: Leveraging biodiversity knowledge for potential phyto-therapeutic applications

Objective

To identify and highlight the feasibility, challenges, and advantages of providing a cross-domain pipeline that can link relevant biodiversity information for phyto-therapeutic assessment.

Materials and methods

A public repository of clinical trials information (ClinicalTrials.gov) was explored to determine the state of plant-based interventions under investigation.

Results

The results showed that ∼15% of drug interventions in ClinicalTrials.gov were potentially plant related, with about 60% of them clustered within 10 taxonomic families. Further analysis of these plant-based interventions identified ∼3.7% of associated plant species as endangered as determined from the International Union for the Conservation of Nature Red List.

Discussion

The diversity of the plant kingdom has provided human civilization with life-sustaining food and medicine for centuries. There has been renewed interest in the investigation of botanicals as sources of new drugs, building on traditional knowledge about plant-based medicines. However, data about the plant-based biodiversity potential for therapeutics (eg, based on genetic or chemical information) are generally scattered across a range of sources and isolated from contemporary pharmacological resources. This study explored the potential to bridge biodiversity and biomedical knowledge sources.

Conclusions

The findings from this feasibility study suggest that there is an opportunity for developing plant-based drugs and further highlight taxonomic relationships between plants that may be rich sources for bioprospecting.