Assessment of Stakeholder Engagement in a Down Syndrome Research Study.

There is growing recognition of the importance of engaging patients early in the design of research studies. For studies involving patients with intellectual and cognitive disabilities, researchers may consider engaging with family caregivers, health professionals, community advocates, and/or subject matter experts to provide a more multifaceted, surrogate perspective. Evaluating the engagement of these stakeholder groups in research is nascent, and tools are limited.

A randomized controlled trial of an online health tool about Down syndrome.

Purpose: We sought to determine if a novel online health tool, called Down Syndrome Clinic to You (DSC2U), could improve adherence to national Down syndrome (DS) guidelines. We also sought to determine if primary care providers (PCPs) and caregivers are satisfied with this personalized online health tool.

Methods: In a national, randomized controlled trial of 230 caregivers who had children or dependents with DS without access to a DS specialist, 117 were randomized to receive DSC2U and 113 to receive usual care.

Efficacy of a clinical decision-support system in an HIV practice: a randomized trial.

Background: Data to support improved patient outcomes from clinical decision-support systems (CDSSs) are lacking in HIV care.

Objective: To test the efficacy of a CDSS in improving HIV outcomes in an outpatient clinic.

Design: Randomized, controlled trial.

Physician ability to assess rheumatoid arthritis disease activity using an electronic medical record-based disease activity calculator.

Objective: To assess physicians' concordance with Disease Activity Score in 28 joints (DAS28) categories calculated by an electronic medical record (EMR)-embedded disease activity calculator, as well as attitudes toward this application.

Methods: Fifteen rheumatologists used the EMR-embedded disease activity calculator to predict a rheumatoid arthritis (RA) DAS28 disease activity category at the time of each clinical encounter.

Results: Physician-predicted DAS28 disease activity categories ranged from high (>5.

A rheumatology-specific informatics-based application with a disease activity calculator.

Objective: To design a rheumatology-specific tool with a disease activity calculator integrated into the electronic medical records (EMRs) at our institution and assess physicians' attitudes toward the use of this tool.

Methods: The Rheumatology OnCall (ROC) application culls rheumatology-pertinent data from our institution's laboratory, microbiology, pathology, radiology, and pharmacy information systems. Attending rheumatologists and rheumatology fellows accessed the ROC and disease activity calculator during outpatient visits at the time of the clinical encounter.

Lessons from implementing a combined workflow-informatics system for diabetes management.

Shortcomings surrounding the care of patients with diabetes have been attributed largely to a fragmented, disorganized, and duplicative health care system that focuses more on acute conditions and complications than on managing chronic disease. To address these shortcomings, we developed a diabetes registry population management application to change the way our staff manages patients with diabetes. Use of this new application has helped us coordinate the responsibilities for intervening and monitoring patients in the registry among different users.

Cost of an informatics-based diabetes management program.

Objectives: The relatively high cost of information technology systems may be a barrier to hospitals thinking of adopting this technology. The experiences of early adopters may facilitate decision making for hospitals less able to risk their limited resources. This study identifies the costs to design, develop, implement, and operate an innovative informatics-based registry and disease management system (POPMAN) to manage type 2 diabetes in a primary care setting.

A controlled trial of population management: diabetes mellitus: putting evidence into practice (DM-PEP).

Objective: Population-level strategies to organize and deliver care may improve diabetes management. We conducted a multiclinic controlled trial of population management in patients with type 2 diabetes.

Research Design And Methods: We created diabetic patient registries (n = 3,079) for four primary care clinics within a single academic health center.

Evaluation of a decision support system for pressure ulcer prevention and management: preliminary findings.

A decision support system for prevention and management of pressure ulcers was developed based on AHCPR guidelines and other sources. The system was implemented for 21 weeks on a 20-bed clinical care unit. Fifteen nurses on that unit volunteered as subjects of the intervention to see whether use of the system would have a positive effect on their knowledge about pressure ulcers and on their decision-making skills related to this topic.

A knowledge-based decision support system for prevention and treatment of pressure ulcers.

As part of a research project intended to provide problem-based knowledge to clinicians at the point of care, we have developed a system that supports the nurse's development of patient-specific, guideline-based treatment plans for patients who have pressure ulcers or are at risk for developing them. The system captures coded data about assessment, diagnosis and interventions using a point-and-click interface. Knowledge is accessible to the user via: 1) hypertext links from the data entry screens; 2) explicit entry into an indexed version of the guideline; 3) imbedded knowledge-based rules that critique the diagnosis and offer guidance for treatment; and 4) explicit entry into interactive algorithms.

Implementing a Web-based clinical information system using EMR middle layer services.

The Clinical Summary is a Web-based application for accessing the clinical database at the Massachusetts General Hospital. The application has been developed to give physicians in our health care community access to clinical information for patients they refer to our hospital. "Middle layer" services, written previously for the hospital's clinical workstation, supply much of the application's functionality.

A decision support system for prevention and treatment of pressure ulcers based on AHCPR guidelines.

We have developed a Pressure Ulcer Prevention and Management System to assist clinicians with patient-specific decision making. The system captures coded data about assessment, diagnosis and interventions using a point-and-click interface. Guideline-based knowledge is imbedded into the system, and is accessible in several ways: 1) via hypertext links from the data entry screens; 2) via explicit entry into an indexed version of the guideline; 3) via imbedded knowledge-based rules that critique the diagnosis and offer guidance for treatment; and 4) via explicit entry into interactive algorithms.

Evaluation of a problem-based access knowledge system using triangulation methods.

A microcomputer-based system designed to provide nurses and physicians access to expert synthesized knowledge in the area of pulmonary arterial waveform troubleshooting has been developed and implemented. Evaluation using triangulation methods show that there was a substantive increase in knowledge in both nurses and physicians.¿.

Indexing guidelines: applications in use of pulmonary artery catheters and pressure ulcer prevention.

In a busy clinical environment, access to knowledge must be rapid and specific to the clinical query at hand. This requires indices which support easy navigation within a knowledge source. We have developed a computer-based tool for trouble-shooting pulmonary artery waveforms using a graphical index.

User evaluation: PA catheter waveforms troubleshooting system.

This paper reports on a user satisfaction survey of a system for consultation and education in troubleshooting pulmonary artery catheter waveforms. The twelve-item End-User Computing Satisfaction Questionnaire was used to assess users' ratings in four areas. On a scale of 1-5 (with 1 the lowest), the ratings were: Content, 3.

Providing clinicians with problem-based access to knowledge: troubleshooting pulmonary artery catheter waveforms.

This paper describes a microcomputer system for providing computer-based access to expert knowledge in the area of troubleshooting pulmonary artery (PA) catheter waveforms. The system is used by both nurses and physicians in an 18-bed medical intensive care unit. Its dominant features are 1) problem-focused access to knowledge, and 2) heavy use of graphics and images to explicate knowledge.