The infinite power of personal health records

Is the possibility of a person having total access to their individual health records too much power for the person? If given such access, could a person incorrectly alter or add information to the record?

Although this is a generation of computer literate and electronics-savvy people, ethical questions have been raised as to how much access a layperson should have to their medical records and just how secure are the files.

The personal health record (PHR) is defined as an electronic application through which individuals can access, manage, and share their health information, and that of others for whom they authorize, in a private, secure and confidential environment. In the United States market, a plan for the widespread acceptance of this tool is being worked out.

Information in a Personally Controlled Electronic Health Record (PCEHR) can be accessed by the patient and the authorized healthcare provider. According to a survey published by The New England Journal of Medicine,1 about 4% of physicians have a fully functional electronic records system (ERS), and 13% have a basic system. Thirty-four percent had ordered a system but had not installed it or planned to purchase one in the next couple of years.

With patient health information available to them, healthcare providers will be able to make better decisions about a patient's health and give better treatment advice, proponents say. Where the controversy comes in is that over time the patient will be able to contribute to the information and add to the recorded information stored in the PCEHR. At what ethical cost will physicians as well as patients possibly have to pay for having this system in place?

Public concerns about privacy and security are a major barrier to the complete adoption of PHRs. A recent survey found that two-thirds of the public is concerned about the privacy and security of their health information.2

Ethics questions arose from a like e-health system that was started in Australia. The Australian Personally Controlled Electronic Heath Record system (PCEHR) is a secure, electronic record of each patient's medical history that is stored and shared in a network of connected systems. The PCEHR brings key health information from several systems together and presents it in a single view.

Although Merle Spriggs, MBioeth, PhD, research fellow at The Royal Children's Hospital, Children's Bioethics Centre in Australia, is a strong advocate for the PCEHR system, she recognizes the ethical ramifications that could possibly arise from using this system. "The ethical concerns are the same for any country," says Spriggs. "They involve issues such as consent, privacy, the degree of control that people will have over who can access the record, etc." Questions must be resolved regarding the legitimate use of data in the PCEHR and by whom, Spriggs says.

Cost is also an issue. "There is a question of who should pay," says Spriggs. "Participation for consumers and health providers in the Australian PCEHR system is voluntary, so this raises questions about the implications for individuals and the record system of lower-than-expected rates to uptake," she says.

As part of the 2010/2011 federal budget, the Australian government announced a $466.7 million investment over two years for a national PCEHR system for all Australians who choose to register online in 2012-2013.

Ethical issues notwithstanding, the benefits possibly outweigh the negatives, some ethics experts say. "Potentially, there are enormous benefits in having such a system and in having our own personally controlled record. Electronic records could improve outcomes for patients by improving safety and quality in healthcare. It is believed that that they will fix the problems of paper records, which are notorious for being difficult to read, incomplete, sometimes unavailable, and not all in the one place," says Spriggs.

References

  1. Robert Steinbrook, MD. Personally controlled online health data — the next big thing in medical care? NEJM 2008; 358:1,653-1,656.
  2. Consumers and Health Information Technology: A National Survey. California Healthcare Foundation. Web: http://www.chcf.org/~/media/Files/PDF/C/PDF%20ConsumersHealthInfoTechnologyNationalSurvey.pdf.

Source/Resource

  • Merle Spriggs, MBioeth, PhD, Research Fellow, The Royal Children's Hospital, Children's Bioethics Centre, Melbourne, Australia. E-mail: merle.spriggs@mcri.edu.au.