Skip to main content Accessibility help

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
×
Home
  • Home
Article
  • Cited by 17

  • Get access
    Add to cart £25.00
    Check if you have access via personal or institutional login
    Log in Register

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)...

Abstract

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 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).

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.

Copyright

COPYRIGHT: © Cambridge University Press 2010

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: Redmond111@aol.com

References

Hide All
1. Gearing, P, Olney, CM, Davis, K, Lozano, D, Smith, LB, Friedman, B. Enhancing patient safety through electronic medical record documentation of vital signs. J Healthc Inf Manag 2006; 20: 40–45.
2. Fioriglio, G, Szolovits, P. Copy fees and patients’ rights to obtain a copy of their medical records: from law to reality. AMIA Annu Symp Proc 2005; 2005: 251–255.
3. Altman, JH, Reich, P, Kelly, MJ, Rogers, MP. Sounding board. Patients who read their hospital charts. N Engl J Med 1980; 302: 169–171.
4. Shekelle, PG, Morton, SC, Keeler, EB. Costs and benefits of health information technology. Evid Rep Technol Assess (Full Rep) 2006; 132: 1–71.
5. Halamka, JD, Mandl, KD, Tang, PC. Early experiences with personal health records. J Am Med Inform Assoc 2008; 15: 1–7.
6. Bush, GW. Presidential Executive Order. Ref Type: Generic; 2004.
7. Dorr, D, Bonner, LM, Cohen, AN, et al. Informatics systems to promote improved care for chronic illness: a literature review. J Am Med Inform Assoc 2007; 14: 156–163.
8. Wang, T, Pizziferri, L, Volk, LA, et al. Implementing patient access to electronic health records under HIPAA: lessons learned. Perspect Health Inf Manag 2004; 1: 11.
9. Britto, MT, Wimberg, J. Pediatric personal health records: current trends and key challenges. Pediatrics 2009; 123 (Suppl 2): S97–S99.
10. Office for Civil Rights, HHS Standards for privacy of individually identifiable health information. Final rule; correction of effective and compliance dates. Fed Regist 2001; 66: 12434.
11. Burke, RP, Michielon, G, Wernovsky, G. Video-assisted cardioscopy in congenital heart operations. Ann Thorac Surg 1994; 58: 864–868.
12. Weitzman, ER, Kaci, L, Mandl, KD. 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. Altman, JH, Reich, P, Kelly, MJ, Rogers, MP. Sounding board. Patients who read their hospital charts. N Engl J Med 1980; 302: 169–171.
14. Mandl, KD, Feit, S, Pena, BM, Kohane, IS. Growth and determinants of access in patient e-mail and Internet use. Arch Pediatr Adolesc Med 2000; 154: 508–511.
15. Kind, T, Huang, ZJ, Farr, D, Pomerantz, KL. Internet and computer access and use for health information in an underserved community. Ambul Pediatr 2005; 5: 117–121.
16. Tufte, ER. Envisioning Information. Graphics Press, Cheshire, CT, 1990.
17. Randeree, E. Exploring technology impacts of healthcare 2.0 initiatives. Telemed J E Health 2009; 15: 255–260.
18. Fanos, JH, Little, GA, Edwards, WH. Candles in the snow: ritual and memory for siblings of infants who died in the intensive care nursery. J Pediatr 2009; 154: 849–853.
19. Capitulo, KL. Evidence for healing interventions with perinatal bereavement. MCN Am J Matern Child Nurs 2005; 30: 389–396.
20. Garros, D, Rosychuk, RJ, Cox, PN. Circumstances surrounding end of life in a pediatric intensive care unit. Pediatrics 2003; 112: e371.

Keywords

  • Cited by 17

  • Get access
    Add to cart £25.00
    Check if you have access via personal or institutional login
    Log in Register

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)...

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed