Views on health information sharing and privacy from primary care practices using electronic medical records

https://doi.org/10.1016/j.ijmedinf.2010.11.005Get rights and content

Abstract

Objective

To determine how patients and physicians balance the perceived benefits and harms of sharing electronic health data for patient care and for secondary purposes.

Design

Before-after survey of patients and providers in practices using electronic medical records (EMRs) enrolled in a clinical trial in Ontario, Canada.

Measurements

Outcomes were measured using the Health Information Privacy Questionnaire (HIPQ) at baseline and end of study. Thirteen questions in 4 general domains investigated attitudes towards the privacy of EMRs, outsider's use of patient's health information, the sharing of patient's information within the health care system, and the overall perception of benefits versus harms of computerization in health care.

Results

511 patients (mean age 60.3 years, 49.6% female) and 46 physicians (mean age 47.2 years, 37.0% female) participated. Most (>90%) supported the computerized sharing of the patient's health records among their health care professionals and to provide clinical advice. Fewer agreed that the patient's de-identified information should be shared outside of the health care circle (<70%). Only a minority of either group supported the notion that computerized records can be keep more private than paper records (38–50%). Overall, a majority (58% patients, 70% physicians) believed that the benefits of computerization were greater than the risks of confidentiality loss. This was especially true for patients who were frequent computer users.

Discussion

While these primary care physicians and their patients valued the clinical features of EMRs, a substantial minority have concerns about the secondary use of de-identified information.

Introduction

Health information sharing between patients and their heath care providers may improve diagnoses, increase patient education and promote self-care [1], [2]. Analyses of de-identified healthcare utilization data have proven useful to assess patterns of care, therapy effectiveness and safety. The use of electronic medical records (EMRs) as the primary source of patient medical information is still relatively rare, but increasing in Canadian, British and American primary care. In addition to improved legibility, the organized note structure of many EMRs supports high quality patient summaries desirable for shared clinical care. Similarly the detailed healthcare information in EMRs makes them important sources of information for clinical, research and policy questions [3], [4], [5]. The same characteristics seen as the strengths of electronic medical record databases are also sources of health information privacy concerns [6], [7]. These include: organization of complex information in standard database format, rapidly accessible key fields such as diagnoses, medications and diagnostics in legible format and compact storage of multiple patient's data. Paper health records have information security concerns, but these may be under-appreciated compared to computerized records.

Health information privacy (HIP) and security have been reported to be prominent concerns of the public, patients and providers [8], [9], [10], [11]. In several studies, patients and physicians have expressed their desire to limit medical-record access among healthcare workers in order to reduce the potential for misuse [10], [12], [13]. In another study, patients were concerned about the secondary use of their health information for research purposes unless all personal identifiers were removed or consent is obtained [14]. However, these studies were somewhat theoretical in that patients and physicians had limited exposure to electronic medical record practices.

Studies evaluating electronic health information communication and storage systems in Europe have noted that exposure to both electronic medical records and to the exchange of personal health information among health care providers through a secure electronic system increased patient confidence in such technologies [15], [16]. This may suggest that patients actively counterbalance their privacy concerns with their perceived benefits from EMR and may be reassured as time passes.

There are limited data on HIP concerns of patients and physicians within North American electronic healthcare settings. Studies by our group have shown that few patients expressed concerns when their paper health records were transferred to electronic medical records, then abstracted for research [17]. In addition a minority of patients that were part of electronic medical record practices in north-central Pennsylvania expressed general concerns in security and confidentiality of their online medical information [18]. Despite such findings, the current clinical and research environment requires a more specific investigation of patient's and physician's opinions.

Our objectives in this study were to: (a) explore the opinions of EMR-using physicians and their patients regarding the benefits and risks of electronic medical records and electronic health information sharing within and outside the family practice, (b) identify predictive demographic variables, (c) investigate the change in opinions over the course of a computerized decision support system intervention linked to EMRs.

Section snippets

Participants

The Computerization of Medical Practices for the Enhancement of Therapeutic Effectiveness II (COMPETE II) study was a randomized trial of a web-based diabetes tracker shared between electronic medical record-using family physicians and their patients with diabetes in Ontario [19]. The study protocol and consent forms were approved by the St. Joseph's Hospital Research Ethics Board. All participants provided informed consent before taking part in the study. As part of the study, all physicians

Patient and physician baseline characteristics (Table 1)

Forty-six physicians and 490 patients participated in the Health Information Privacy Questionnaire sub-study. Physicians were a mean age of 47.2 years (SD = 7.4) and 37.0% were female. Physicians were located in 18 different sites across Ontario, Canada and most (69.6%) had been using their EMR for more than 2 years at the time of enrollment. Patients had a mean age of 60.3 years (SD = 12.4) and 49.6% were female. Most patients lived with other family members (57.6%) and had completed at least a

Discussion

This is one of the largest surveys of the health information privacy views of patients and their physicians in electronic medical record practices. The views of our patients on the benefits of EMRs, the use of their health information for research and the potential for privacy loss are similar to public opinion in the limited research to date [22]. This suggests that the generalizability of our findings may be extended beyond those with diabetes and the EMR-using population.

Overall, despite

Author contributions

AH designed the study, obtained funding, supervised intervention, analysis and manuscript preparation. GP drafted and revised the manuscript and organized the analysis. GF and LT led the statistical analysis. DW provided topic expertise and helped revise the manuscript.

Competing interests

All authors declare that they have no competing interests to declare.

Summary points

What was already known on the topic:

  • As electronic medical records (EMRs) proliferate, so do concerns regarding patient health information privacy.

  • Previous research suggests that the public is concerned about the security and confidentiality risks of computerizing health information but they may under-appreciate the same risks of paper records.

What this study added to our knowledge:

  • This research surveyed and

References (26)

  • A. Hassol et al.

    Patient experiences and attitudes about access to a patient electronic health care record and linked web messaging

    JAMA

    (2004)
  • S.E. Ross et al.

    The effects of promoting patient access to medical records: a review

    J Am Med Inform Assoc

    (2003)
  • S.E. Ross et al.

    Providing a web-based online medical record with electronic communication capabilities to patients with congestive heart failure: randomized trial

    J Med Internet Res

    (2004)
  • S.S. Jick et al.

    Validity of the general practice research database

    Pharmacotherapy

    (2003)
  • R. Lawrenson et al.

    Clinical information for research; the use of general practice databases

    J Public Health Med

    (1999)
  • L. Wood et al.

    The general practice research database: role in pharmacovigilance

    Drug Saf

    (2004)
  • J.D. Ralston et al.

    Patients’ experience with a diabetes support programme based on an interactive electronic medical record: qualitative study

    BMJ

    (2004)
  • C.M. Renders et al.

    Interventions to improve the management of diabetes in primary care, outpatient, and community settings: a systematic review

    Diabetes Care

    (2001)
  • T. Porteous et al.

    Electronic transfer of prescription-related information: comparing views of patients, general practitioners, and pharmacists

    Br J Gen Pract

    (2003)
  • C.S. Gadd et al.

    Dichotomy between physicians’ and patients’ attitudes regarding EMR use during outpatient encounters

  • Bolton Research Group

    Patients’ knowledge and expectations of confidentiality in primary health care: a quantitative study

    Br J Gen Pract

    (2000)
  • P. Chhanabhai et al.

    Consumers are ready to accept the transition to online and electronic records if they can be assured of the security measures

    MedGenMed

    (2007)
  • T. Adams et al.

    Lessons from the central Hampshire electronic health record pilot project: issues of data protection and consent

    BMJ

    (2004)
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