Jeffrey A. White

Transforming patient and family access to medical information: utilisation patterns of a patient-accessible electronic health record.

OBJECTIVE The purpose of this study was to evaluate the utilisation of a web-based multimedia patient-accessible electronic health record, for patients with congenital cardiac disease. PATIENTS AND METHODS This was a prospective analysis of patients undergoing congenital cardiac surgery at a single institution from 1 September, 2006 to 1 February, 2009. After meetings with hospital administration, physicians, nurses, and patients, we configured a subset of the cardiac programs web-based clinical electronic health record for patient and family access. The Electronic Health Record continuously measured frequency and time of logins, logins during and between hospitalisations, and page views by type (imaging versus textual data). RESULTS Of the first 270 patients offered access to the system, 252 became users (93% adoption rate). System uptime was 99.9%, and no security breaches were reported. Users accessed the system more often while the patients were in hospital (67% of total logins) than after discharge (33% of total logins). The maximum number of logins by a family was 440, and the minimum was 1. The average number of logins per family was 25. Imaging data were viewed significantly more frequently than textual data (p 0.001). A total of 12 patients died during the study period and 11 members of their families continued to access their Electronic Health Records after the date of death. CONCLUSIONS A web-based Patient Accessible Electronic Health Record was designed for patients with congenital cardiac disease. The adoption rate was high, and utilisation patterns suggest that the Electronic Health Record could become a useful tool for health information exchange.

Assisted venous drainage cardiopulmonary bypass in congenital heart surgery.

BACKGROUND A novel active venous drainage perfusion circuit was designed to achieve effective venous return through small venous cannulas. The efficacy and safety of this new system was investigated and compared with a conventional gravity drainage system. METHODS Four hundred consecutive patients undergoing open heart repair of congenital heart lesions by one surgeon were studied. The first 200 patients were supported by gravity drainage and the next 200 patients were supported by assisted venous drainage. No patient in the time period was excluded from the study. RESULTS The two groups did not differ significantly in weight, bypass time, or cross-clamp time. Priming volumes were less in the assisted group than in the gravity group (576+/-232 mL versus 693+/-221 mL, p < 0.001). Venous cannula size was smaller in the assisted group when compared with the gravity group (33.2F+/-7.4F versus 38.5F+/-7.1F, p < 0.001). There was a trend to lower operative mortality in the assisted drainage group (5 of 200, 2.5% versus 11 of 200, 5.5%; p = 0.10). Hospital stay and pulmonary, infectious, and neurologic complications were comparable in both groups. Cardiac complications were less common in the assisted group than in gravity group (22 of 200, 11% versus 38 of 200, 19%; p = 0.017). Hematologic complications were less common in the assisted group than the gravity group (6 of 200, 3% versus 19 of 200, 9.5%; p < 0.01). CONCLUSIONS These findings suggest that assisted venous drainage is safe in congenital heart operations and facilitates the use of smaller venous cannulas.

Video-assisted cardioscopy for intraventricular repair in congenital heart disease.

BACKGROUND Video-assisted thoracoscopic surgical techniques have been widely adopted as a means to reduce surgical trauma. By adapting pediatric thoracoscopic instrumentation, we have developed a technique for video-assisted cardioscopy (VAC). We report our experience and describe the technical feasibility of VAC. METHODS Since June 1995, 409 consecutive patients underwent 431 intracardiac procedures (ventricular septal defect, 150; tetralogy of Fallot or double outlet right ventricle, 101; atrioventricular canal, 52; subaortic stenosis, 43; valve repair, 50; Rastelli procedure, 12; Konno or Ross Konno operation, 11; and miscellaneous, 12) using VAC at Miami Childrens Hospital. Using a prospective database, we tracked outcomes and operative events to delineate the usefulness and efficacy of this technique. RESULTS VAC provided clear and precise imaging of small or remote intracardiac structures during repair of congenital heart defects without technical complications. Procedure times and aortic cross-clamp times using VAC were not prolonged. Intraoperative images were collected for every operation, documenting each patients cardiac anatomy before and after repair. Surgery through small incisions was facilitated. Operative mortality was 1.2% (5 of 409), and no patient required reoperation before discharge. At a mean follow-up interval of 22 months, the incidence of reoperation for residual or recurrent lesions was 1.2% (5 of 404). CONCLUSIONS Our experience demonstrates the technical feasibility and clinical utility of routine endoscopic imaging during open heart surgery for congenital heart repair.

A flexible approach for electronic medical records exchange

Many methodologies have been proposed in the last decade for integration and exchange of medical data. However, little progress has occurred due to the following reasons. First, patients are reluctant to give full access to their historical medical data. Second, institutions are reluctant to open their systems to mediators or any type of external access, due to security, privacy (HIPAA, unique patient id) and competitive advantage-related reasons.

The fenestrated Kawashima operation for single ventricle with interrupted inferior vena cava

An 8-month-old boy with double outlet right ventricle with hypoplastic left ventricle, heterotaxy, left atrial isomerism, bilateral superior vena cavae without bridging vein, and interruption of the inferior vena cava with azygous continuation to the left superior cava underwent a bilateral bidirectional cavopulmonary anastomosis. A calibrated 3-mm connection between the right pulmonary artery and the common atrium was constructed with the proximal right superior vena cava to allow right to left shunting, analogous to a fenestration in a Fontan operation. We hypothesize that in small young patients undergoing the Kawashima operation a fenestration may improve postoperative hemodynamics.

The Ross operation in a Jehovah’s Witness: a paradigm for heart surgery in children without transfusion

A 3-year-old 18 kg male child of the Jehovahs Witness faith presented with severe aortic regurgitation. A successful Ross procedure was performed using a pulmonary autograft, without the use of blood or blood product transfusion. Blood conservation strategy included: (1) preoperative treatment with recombinant human erythropoietin; (2) intraoperative strategies, including technical modifications to the Ross procedure, and the prophylactic use of fibrin glue; (3) utilization of a heparin-bonded cardiopulmonary bypass circuit and assisted venous drainage; and 4) the use of prebypass phlebotomy, cell-saving device and autotransfusion. The patient was discharged home on postoperative day 7 with a hemoglobin level of 11.9.

Minimally invasive resection of congenital subaortic stenosis

Fifteen consecutive patients with membranous subaortic stenosis underwent resection by a minimal-access approach through a partial upper sternotomy using a cardioscope. There were no operative deaths and no postoperative complications. Twelve patients (80%) were extubated in the operating room. The mean hospital stay was 3.1 days, and 3 patients (20%) needed blood products. Our experience demonstrates that this modified approach is a safe and effective surgical option for resection of subaortic stenosis.

Achieving resonance in a congenital heart team

Abstract To improve outcomes in congenital heart care, and create a more satisfying work environment for our congenital heart team, we have focused on achieving states of resonance in two areas—clinical care and information management. The common pathway to achieving these different states of resonance was the constant adoption and creation of new technology. We defined clinical resonance as a state of strategic synchrony in the therapeutic approach to each patient presented to the team for congenital heart treatment. We felt that boundaries between subspecialties might inhibit progress, and focused on developing a unified approach to a number of congenital lesions. We synthesized techniques in conventional surgery, minimally invasive surgery, and interventional catheterization to create a series of hybrid approaches. The overall goal of each therapeutic plan was designed to minimize the cumulative trauma to each patient over their lifetime. A strategy for information technology development was devised, using an on site technology advisor to facilitate the integration of numerous cardiac team information sources. A series of tools were created and adopted by the cardiac team, to achieve information resonance. Information technology was used to measure clinical performance, and facilitate rapid clinical information sharing between all members of the extended congenital heart team. Our current information technology platform is an Internet based medical information system, integrating diverse clinical databases on the World Wide Web.