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

  • Redmond P. Burke (a1), Anthony F. Rossi (a1), Bryan R. Wilner (a2), Robert L. Hannan (a1), Jennifer A. Zabinsky (a1) and Jeffrey A. White (a3)
  • DOI:
  • Published online: 11 May 2010

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 program’s 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).


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.


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.

Corresponding author
Correspondence to: R. P. Burke, MD, Division of Cardiovascular Surgery, Miami Children’s Hospital, 3100 SW, 62nd Avenue, Miami, FL 33155-3009, United States of America. Tel: +305 663-8401; Fax: +305 669-6574; E-mail:
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1.P Gearing , CM Olney , K Davis , D Lozano , LB Smith , B Friedman . Enhancing patient safety through electronic medical record documentation of vital signs. J Healthc Inf Manag 2006; 20: 4045.

3.JH Altman , P Reich , MJ Kelly , MP Rogers . Sounding board. Patients who read their hospital charts. N Engl J Med 1980; 302: 169171.

5.JD Halamka , KD Mandl , PC Tang . Early experiences with personal health records. J Am Med Inform Assoc 2008; 15: 17.

7.D Dorr , LM Bonner , AN Cohen , Informatics systems to promote improved care for chronic illness: a literature review. J Am Med Inform Assoc 2007; 14: 156163.

9.MT Britto , J Wimberg . Pediatric personal health records: current trends and key challenges. Pediatrics 2009; 123 (Suppl 2): S97S99.

11.RP Burke , G Michielon , G Wernovsky . Video-assisted cardioscopy in congenital heart operations. Ann Thorac Surg 1994; 58: 864868.

12.ER Weitzman , L Kaci , KD Mandl . Acceptability of a personally controlled health record in a community-based setting: implications for policy and design. J Med Internet Res 2009; 11: e14.

13. JH Altman , P Reich , MJ Kelly , MP Rogers . Sounding board. Patients who read their hospital charts. N Engl J Med 1980; 302: 169171.

14.KD Mandl , S Feit , BM Pena , IS Kohane . Growth and determinants of access in patient e-mail and Internet use. Arch Pediatr Adolesc Med 2000; 154: 508511.

15.T Kind , ZJ Huang , D Farr , KL Pomerantz . Internet and computer access and use for health information in an underserved community. Ambul Pediatr 2005; 5: 117121.

16.ER Tufte . Envisioning Information. Graphics Press, Cheshire, CT, 1990.

17.E Randeree . Exploring technology impacts of healthcare 2.0 initiatives. Telemed J E Health 2009; 15: 255260.

18.JH Fanos , GA Little , WH Edwards . Candles in the snow: ritual and memory for siblings of infants who died in the intensive care nursery. J Pediatr 2009; 154: 849853.

19.KL Capitulo . Evidence for healing interventions with perinatal bereavement. MCN Am J Matern Child Nurs 2005; 30: 389396.

20.D Garros , RJ Rosychuk , PN Cox . Circumstances surrounding end of life in a pediatric intensive care unit. Pediatrics 2003; 112: e371.

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Cardiology in the Young
  • ISSN: 1047-9511
  • EISSN: 1467-1107
  • URL: /core/journals/cardiology-in-the-young
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