Donna M. Zulman, MD, MS; Kim M. Nazi, MA; Carolyn L. Turvey, PhD, MS; Todd H. Wagner, PhD; Susan S. Woods, MD, MPH; Larry C. An, MD
Acknowledgement: The authors thank Rod Hayward and Colin Cooke, University of Michigan, for thoughtful comments regarding study findings; Erica Noble, ForeSee Results, for assistance with data management; and members of the My HealtheVet Performance Evaluation Workgroup for their assistance with refining the survey instrument.
Grant Support: By the Veterans Health Administration and The Robert Wood Johnson Foundation Clinical Scholars Program.
Potential Conflicts of Interest: Disclosures can be viewed at www.acponline.org/authors/icmje/ConflictOfInterestForms.do?msNum=M11-1221.
Reproducible Research Statement:Study protocol, statistical code, and data set: Not available.
Requests for Single Reprints: Donna Zulman, MD, MS, Center for Health Care Evaluation, VA Palo Alto Health Care System, 795 Willow Road (152-MPD), Menlo Park, CA 94025; e-mail, email@example.com.
Current Author Addresses: Dr. Zulman: Center for Health Care Evaluation, VA Palo Alto Health Care System, 795 Willow Road (152-MPD), Menlo Park, CA 94025.
Ms. Nazi: Veterans and Consumers Health Informatics Office, Stratton VA Medical Center,113 Holland Avenue, Albany, NY 12208.
Dr. Turvey: Psychiatry Research-MEB, University of Iowa, 500 Newton Road, 2-204 MEB, Iowa City, IA 52242-1000.
Dr. Wagner: Health Economics Resource Center, VA Palo Alto Healthcare System, 795 Willow Road (152-MPD), Menlo Park, CA 94025.
Dr. Woods: Portland Center for the Study of Chronic, Comorbid Mental and Physical Disorders, 3710 SW U.S. Veterans Hospital Road, Mailcode P3HSRD, Portland, OR 97239-2964.
Dr. An: Center for Health Communications Research, University of Michigan, 300 North Ingalls-5D08, Ann Arbor, MI 48109.
Author Contributions: Conception and design: D.M. Zulman, C. Turvey, L.C. An.
Analysis and interpretation of the data: D.M. Zulman, K. Nazi, C. Turvey, L.C. An.
Drafting of the article: D.M. Zulman, C. Turvey, S.S. Woods, L.C. An.
Critical revision for important intellectual content: D.M. Zulman, C. Turvey, T.H. Wagner, S.S. Woods, L.C. An.
Final approval of the article: D.M. Zulman, K. Nazi, T.H. Wagner, S.S. Woods, L.C. An.
Statistical expertise: T.H. Wagner.
Administrative, technical, or logistic support: T.H. Wagner.
Collection and assembly of data: K. Nazi.
Zulman D., Nazi K., Turvey C., Wagner T., Woods S., An L.; Patient Interest in Sharing Personal Health Record Information: A Web-Based Survey. Ann Intern Med. 2011;155:805-810. doi: 10.7326/0003-4819-155-12-201112200-00002
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Published: Ann Intern Med. 2011;155(12):805-810.
Electronic personal health record (PHR) systems are proliferating but largely have not realized their potential for enhancing communication among patients and their network of care providers.
To explore preferences about sharing electronic health information among users of the U.S. Department of Veterans Affairs (VA) PHR system, My HealtheVet.
Web-based survey of a convenience sample.
My HealtheVet Web site from 7 July through 4 October 2010.
18 471 users of My HealtheVet.
Interest in shared PHR access and preferences about who would receive access, the information that would be shared, and the activities that users would delegate.
Survey respondents were predominantly men (92%) and aged 50 to 64 years (51%) or 65 years or older (39%); approximately 39% reported poor or fair health status. Almost 4 of 5 respondents (79%) were interested in sharing access to their PHR with someone outside of their health system (62% with a spouse or partner, 23% with a child, 15% with another family member, and 25% with a non-VA health care provider). Among those who selected a family member other than a spouse or partner, 47% lived apart from the specified person. Preferences about degree of access varied on the basis of the type of information being shared, the type of activity being performed, and the respondent's relationship with the selected person.
The survey completion rate was 40.8%. Results might not be generalizable to all My HealtheVet users.
In a large survey of PHR users in the VA system, most respondents were interested in sharing access to their electronic health information with caregivers and non-VA providers. Existing and evolving PHR systems should explore secure mechanisms for shared PHR access to improve information exchange among patients and the multiple persons involved in their health care.
Veterans Health Administration and The Robert Wood Johnson Foundation Clinical Scholars Program.
Physicians and hospitals are implementing electronic personal health record systems with little understanding of how patients want their information used.
In this survey of veterans who use an electronic system containing their medical records and health information, 4 of 5 respondents wanted someone outside of the health system, especially family members and health care providers, to have access to at least some of their information.
The survey response rate was low, which means that the persons who answered survey questions may not adequately represent all users.
Electronic health record systems should enable secure sharing of information with patient-designated users outside of the health system.
Electronic personal health records (PHRs) are increasingly available tools to better inform persons about their health and actively engage them in their health care (1-2). The percentage of persons in the United States who use electronic PHRs has increased from 3% to 10% since 2008 (3-5), and PHR users report high levels of satisfaction with existing systems (6-8). Moreover, interest in the capabilities of PHRs is strong (3, 4, 9-12), and adoption of these systems is likely to increase as PHR functions expand, particularly if there are demonstrable benefits for patients' health and quality of care (13).
More than 75% of patients who access PHRs use a program that is available through their health insurance plan, health care provider, or employer (5). These PHRs are frequently linked to a patient's electronic health record and provide access to personal health information, such as results of laboratory studies and providers' visit notes. Some PHRs have recently become more patient-centered (14), offering secure messaging with providers, personalized recommendations for preventive care, and interactive self-management tools. The goal of these programs is to more fully integrate all aspects of the patient's health and health care, thus promoting active, ongoing patient collaboration in care delivery and decision making (15).
A potential benefit of the PHR that most systems have yet to fully realize is the opportunity to enhance communication among the network of persons who care for patients (2). Patients frequently receive care from multiple health care providers, some of whom do not have access to the patient's primary electronic health record. Many patients, especially those with chronic conditions and persons in poor health, also have family members and friends who are intimately involved in their health and health care. This assistance is often provided from afar, with approximately 15% of caregivers of adult patients reporting that they live more than 1 hour from their care recipient (16). Many older persons also have adult children living outside the home who could provide substantial support if they could access specific, accurate information about their parents' health (17).
Although shared access to PHRs could improve communication among patients, their caregivers, and their dispersed health care team, few PHRs currently offer this feature. Even when information sharing is permitted, PHR access tends to be limited to a single family caregiver or to parents of minors, and substantial documentation may be required to establish shared access (17-19). These types of policies are probably driven in large part by data security and privacy concerns.
Security issues are complex in PHR design, because these systems often incorporate data from multiple sources, are accessed from personal computers and portable devices, and must be usable by persons with limited computer expertise (20). Data security and privacy are also high priorities among patients. Despite general enthusiasm for PHRs, approximately 60% of PHR users and nonusers express concern about the privacy of their personal medical records (3), and these perceptions are associated with their interest in using a PHR (21).
Some patients fear that PHR use may increase risk for identity theft or enable inappropriate access to information by marketers, employers, or health insurers (12). Nevertheless, most patients and physicians overwhelmingly endorse allowing individuals to make informed choices about how their information is collected, shared, and used (6). Therefore, the possibility exists for achieving a better balance between privacy and security needs and patients' desires to share information.
To explore patient preferences about shared access to electronic health information, we surveyed persons who use My HealtheVet, the PHR of the U.S. Department of Veterans Affairs (VA). Results from this survey will inform the development of shared PHR access within the VA health care system, as well as in other health systems with existing and evolving PHRs.
My HealtheVet is the Web-based PHR system maintained by the Veterans Health Administration of the VA, one of the nation's largest integrated health care systems. Introduced in 2003, My HealtheVet was designed to complement traditional clinical services and empower patients and their families to play more active roles in their health care (10). Health education resources, including topics of special interest to veterans, are publicly available through this Web site. Veterans who visit the site can also self-register and may then create a customized PHR that allows them to store and track self-entered health data and medications.
Veterans receiving care at a VA medical center can request medication refills through My HealtheVet. Furthermore, those who complete an in-person authentication process at a local VA facility can view additional information about their medications and appointments, receive wellness reminders, and view and download certain information from their electronic health records (22). My HealtheVet is currently linked to only some portions of patients' medical records (for example, medication lists and results of laboratory studies), but the VA is in the process of expanding these linkages. In addition, patients can now communicate with their primary care providers by using secure messaging.
As of June 2011, My HealtheVet had 1 360 897 registered users, and 364 067 (27%) had completed the in-person authentication process. Of the registered users, 85.3% indicated that they are veterans and 75.6% reported receiving care through the VA. A small proportion of My HealtheVet users indicated that they are VA employees (3.6%) or family members, friends, or advocates of veterans (2.1%). The median age of registered users is 61 years, and 33% of users are older than 65 years (compared with 42% of all veterans) (23). Most users (88%) were men (compared with 92% of all veterans) (23).
The VA monitors user satisfaction with My HealtheVet by using the American Customer Satisfaction Index (ACSI) survey (7), a tool that government Web sites frequently use to survey public audiences (24). Once My HealtheVet visitors have viewed 4 pages on the Web site, approximately 4% are randomly invited to participate in the survey through a pop-up browser window. This sampling percentage is used to maximize data collection while minimizing respondent burden. Participation in the survey is voluntary and anonymous. The average response rate for the My HealtheVet ACSI survey is 17.2% (7).
Between 7 July and 4 October 2010, we added custom questions to the My HealtheVet ACSI survey to investigate users' interest in sharing access to their PHRs. Users were asked, “If you could allow one or more people to see some or all of your information in your My HealtheVet PHR, which of the following people might you choose?” Response options included spouse or partner, child, other family member, unrelated caregiver, friend or neighbor, non-VA health care provider, and none. For each selected individual, the respondents were asked which parts of their PHR they would want that person to see (for example, medication lists, laboratory or other study results, and patient-entered health information), what types of activities they would want that person to be able to perform on their behalf (for example, requesting prescription refills, entering health information, and communicating with providers), and whether the selected person lives with them (if the person was a family member other than a spouse or partner). In addition, the ACSI survey queried respondents about their age, sex, and health status.
Responses to custom questions were required per protocol of the VA's ACSI survey, although participants could exit the survey at any time. The ACSI did not track the number of survey invitations, but approximately 4% of the 1 549 365 users of My HealtheVet who visited 4 or more pages during the study period were invited to participate. Of the 45 281 persons who accepted the survey invitation (acceptance rate, approximately 73%), 18 471 answered the custom questions about shared PHR access, resulting in a survey completion rate of 40.8%.
The ForeSee Results Online Portal, version 6.2.15 (ForeSee Results, Ann Arbor, Michigan), collected and managed data for this survey. Variation in interest in sharing PHR access across age, sex, and health status was assessed by using chi-square tests performed with Microsoft Office Excel 2007 (Microsoft, Redmond, Washington). Missing data rates were less than 5% for optional survey questions about sociodemographic characteristics and health status. This project was categorized as exempt by the institutional review boards at the University of Michigan and the VA Ann Arbor Healthcare System.
The My HealtheVet ACSI survey is sponsored and administered by the Veterans Health Administration's Veterans and Consumers Health Informatics Office. Analysis and interpretation of survey findings were funded by The Robert Wood Johnson Foundation Clinical Scholars Program and an associated VA Advanced Fellowships Program. The funding sources had no roles in study design, data analysis, or reporting of results, aside from those described above.
Table 1 describes the characteristics of survey respondents and shows the proportion within each subgroup who expressed interest in sharing PHR access. Of the 18 471 respondents who completed the questions about shared PHR access, 14 546 (79%) were interested in designating someone outside of the VA health system to access their My HealtheVet record. Interest in shared PHR access was modestly but significantly greater among older adults and men but did not vary by health status (Table 1).
More than one half of the respondents (62%) wanted to grant PHR access to their spouse or partner, and a smaller percentage wanted to grant access to a child (23%), other family member (15%), unrelated caregiver (7%), or friend or neighbor (2%) (Table 2). Of the respondents who selected a family member other than a spouse or partner, 47% (17% of the total sample) reported that the family member did not live with them. One of 4 respondents (25%) indicated that they would like to grant PHR access to a health care provider outside of the VA system.
Respondents' preferences about sharing information varied on the basis of the specific type of information being shared and on the type of activity being delegated to the designated person (Table 2). For example, respondents were more interested in sharing access to medication lists, appointment information, and laboratory and test results with their designee than patient-entered health information or communications with providers. Respondents were similarly more interested in delegating prescription refill requests and appointment scheduling than in having the designee communicate with their health care provider. These preferences were consistent regardless of the respondent's relationship with the person whom he or she selected.
Although respondents tended to be most interested in sharing information with family members (especially a spouse or partner), they expressed high levels of interest in allowing unrelated caregivers to conduct activities in their PHR, such as requesting prescription refills or scheduling appointments (Table 2). In fact, respondents were more interested in delegating certain activities, such as communicating with care providers and entering health information, to an unrelated caregiver (73% and 80%, respectively) than to a spouse or partner (65% and 74%, respectively).
In this survey of My HealtheVet users, a striking majority (79%) of respondents were interested in sharing their electronic health information with family members, caregivers, and non-VA health care providers. Sharing PHR information is currently not easy. Many patients have to print the information that they wish to share and hand it to the person with whom they want to share it. Health systems that enable patients to authorize access to their PHRs could facilitate information exchange and therefore enhance the value of PHR technology for patients with complicated health and health care needs.
Results from this survey indicate that patients not only want to share their electronic health information but also want control over the type of information and degree of access that is shared with specified persons. For example, respondents were much more likely to share access to medication lists and delegate prescription refill activities than to share access to or delegate communications with care providers (Table 2). This finding suggests that patients desire the capability to selectively share access to their PHR, such that they can grant PHR access to 1 or more persons while specifying what information the designated person can view and what types of activities he or she can perform on behalf of the patient.
A substantial number of respondents expressed interest in granting PHR access to a health care provider outside of the VA system (25%) or to a long-distance family member (17%). Recent surveys indicate that many caregivers have a corresponding interest in using Web sites to track health information for their care recipients (5), and most providers want to electronically share patient information with other professionals (6).
Some patients already download, print, and share their electronic health information with caregivers and health care providers (25), a potentially cumbersome process that has inherent data security risks. Allowing patients to delegate PHR access to their caregivers and multiple care providers could enhance communication among the members of a patient's care team. In addition, incorporating these individuals' input into a patient's PHR may improve the accuracy of the health and self-care information in the patient's medical record (26), which would have positive implications for patient safety (27).
A critical issue in the development of shared-access PHR features will be to understand how to optimize information exchange while protecting patient privacy and health information security (12, 22. Health information protection is important not only for active PHR users but also to ensure the continued adoption of PHRs by current nonusers, a group among whom privacy concerns are often paramount (5).
Early evaluations of secure shared-access features are promising. A recent My HealtheVet pilot that allowed users to designate a proxy who could view their health records was well-received and ranked as a high priority by patients (Nazi KM. Unpublished data). Policies that are currently in place or are being developed aim to ensure that these types of shared-access features address patients' privacy concerns. For example, the PHRs that health plans provide must comply with the Health Insurance Portability and Accountability Act of 1996 Privacy Rule (28), and the U.S. Department of Health and Human Services is creating a template for Web-based PHR vendors to inform consumers of their PHR privacy and security policies (29).
A potential limitation of our study is that the survey acceptance rate was approximately 73%, and only 30% of those who accepted the invitation completed the survey (completion rate, 40.8%). The ACSI survey does not currently collect information from partially completed surveys, so we were unable to assess whether response bias occurred or whether there were differences between those who completed the survey and those who accepted the survey invitation but did not complete it. However, the completion rate for this survey was well above the average completion rate of ForeSee Results' ACSI surveys during the study period (12% to 15%). Furthermore, previous examinations of the VA's ACSI surveys have not revealed evidence of systemic bias (7).
The focus of this study on users of My HealtheVet also may limit the generalizability of survey findings. To our knowledge, however, this survey represents the largest assessment of patient interest in shared PHR access. In addition, many patients who use the VA system are older and in poor health (30), and previous studies have shown that such patients are more likely to use PHRs (13, 31 and are also likely to benefit most from PHR use compared with their healthier counterparts (5).
In conclusion, this large-scale survey of veterans suggests that most PHR users are interested in sharing access to their electronic health records. Findings indicate a need for delegation features in evolving PHRs within the VA and other health systems. Additional research should explore whether shared access to electronic health information reduces the burden of long-distance caregiving, improves communication among multiple care providers, poses a measurable risk to data security, or causes problems with reconciliation of information from multiple sources. Although health systems have an obligation to protect their patients' health information, it may be time to modify current policies to better facilitate information access and exchange among persons who are most likely to keep our patients healthy and well.
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