The effective application of health information technology to improve health and health care services has been a foundational part of the eHealth movement aimed at empowering and engaging consumers, patients, and families.1–9 At the intersection of this trend is the Personal Health Record (PHR). Today, most PHRs are Web-based portals that are tethered to an organization’s Electronic Health Record (EHR),10–12 increasing patient access to personal health information.13,14 Such access can empower patients and positively impact medication adherence and behavior change.15,16 Accordingly, PHRs are positioned as tools to achieve the patient-centric objectives of Meaningful Use.17–19
ORIGINS OF AN EARLY PHR
The Department of Veterans Affairs (VA), Veterans Health Administration (VHA) was an early pioneer in utilizing an enterprise-wide EHR, Veterans Information System Technology Architecture (VistA).20,21 With the vision of offering Veterans easy access to information within their EHR, VHA launched the My HealtheVet Pilot Program in 2000 as a demonstration project to provide secure access to personal health information through an early PHR prototype. Initiated more than a decade ago, the pilot represented an unprecedented opportunity to present a cohort of VHA patients with Web-based access to 18 types of information from the VHA EHR, including clinical notes and laboratory test results. Patients could also track personal health metrics (eg, blood sugar), access health education content, and authorize information sharing with others (Table 1). Following on the pilot, the National My HealtheVet PHR Portal (http://www.myhealth.va.gov) was released in November 200322–24 with a variety of features added incrementally. The pilot was subsequently discontinued in March 2011. Since the pilot was launched, 7464 Veteran pilot participants at 9 VA Medical Centers (Albany, Bath, Bay Pines, Buffalo, Canandaigua, Portland, Syracuse, Tampa, and Washington DC) had access to the pilot Web site. Each facility developed local marketing, recruitment, and enrollment processes.
OBJECTIVE OF THE STUDY
The overall objective of this study was to administer a survey to Veteran pilot participants to elicit their feedback about the perceived impact of enhanced access to personal health information, including the data elements of most value; and the impact of this access on satisfaction, self management, communication, and health care quality.
Institutional Review Board approval was obtained at each of the 9 participating Medical Centers, and the survey instrument was approved by the US Office of Management and Budget. All Veterans enrolled in the pilot were eligible for the survey, and a VistA query routine was used to produce a list of enrolled pilot participants at each site. After removing test accounts from the list and screening for unknown addresses, 6000 customized letters were mailed to Veteran participants, inviting them to participate in a Web-based anonymous survey. Because of the extended duration of the pilot, there were some challenges in contacting participants, most notably, changes in mailing addresses. For this reason, a link to the survey was also made available on the pilot Web site.
The survey was available from April 2009 through February 2010. A total of 744 surveys were returned representing an estimated response rate of 12%. Of these, 4 surveys were submitted without data and removed. Of the 740 remaining submissions, 52 respondents reported in 2 survey questions that they had never used the pilot Web site. Upon review, these submissions were removed from the dataset. A total of 688 Veteran surveys were included in descriptive statistical analysis.
As shown in Table 2, 92% of the respondents were male and 71% were between 51 and 70 years of age (45% between 61 and 70 y and 26% between 51 and 60 y). In comparison, 93% of the Veteran population is male and approximately 42% is in a similar age range (50–69 y). In terms of educational attainment, 42% reported some college or vocational school as their highest level of education. Most respondents rated their Internet skill level as either intermediate (33%) or advanced (64%), and some reported having impairments (8% hearing, 7% visual, and 6% dexterity) that could affect their ability to use the pilot Web site.
Pilot Enrollment and Training
The majority of respondents (70%) enrolled in the pilot at the Portland, Oregon VA Medical Center, were proportionate to overall pilot enrollment (72%). Most respondents reported hearing about the pilot either from VHA staff (39%) or through a flyer, brochure, or newsletter (38%). To a lesser degree, Veterans said that they heard about the pilot from their doctor or other health care professional (17%). As shown in Table 3, most Veterans reported that they either had received no training about using the pilot Web site (43%) or used self-instruction materials (36%). Among those who did receive training, however, 94% said that they found it helpful.
Frequency and Duration of Use and Reasons for Participating
The majority of respondents (77%) reported using the Web site for more than 2 years, with 36% reporting use for 4 years or more (Table 3). Most users either accessed the Web site about once a month (39%) or once a week (31%), although 7% reported visiting daily. Respondents accessed the Web site primarily from home, with most (93%) using a high-speed Internet connection.
As shown in Table 4, when asked why they had decided to participate in the pilot, 85% said that they wanted to access information from their VHA medical record, 50% wanted to improve their understanding of their medical problems and treatments, and 46% wanted to have a record of their personal health information.
Feature Utilization, Usefulness, and Ease of Use
When asked about Web site features they had utilized, most Veterans accessed their VHA medical record (88%) and VHA administrative information (65%), as shown in Table 4. One third of respondents (32%) reported using the health education library, and 22% reported self-entering data using the Web site’s Healthelog features. When respondents were asked how they used the Web site’s features, 64% reported that they looked up information on a disease, condition, or treatment; whereas 39% said that they discussed information with their health care provider. Although delegation was available, only 17% granted access to their VHA health care provider, whereas 15% granted access to a family member or loved one.
Respondents were asked to rank the “top 5 most useful” features available on the Web site. Scores were calculated by assigning 5 points to a feature ranked as number 1, 4 points to a feature ranked as number 2, and so on. These weighted scores were summed across all participants to rank order usefulness of Web site features. Participants reported that the most useful features were viewing portions of their medical record, accessing their prescription history, and viewing appointments.
When asked how easy it was to understand information in the site’s health education library, most respondents (66%) reported it was easy or very easy. Similarly, most users (75%) found it easy or very easy to understand the information contained in their medical record. Most (72%) also agreed or strongly agreed that the Web site made it easy to locate information relevant to their health care.
Perceptions About Pilot Web Site Usefulness, Ease of Use, and Impact
Figure 1 presents respondent perceptions about pilot Web site usefulness, ease of use, and impact of use. The majority of respondents (84%) described the Web site information and services as useful. About half (48%) agreed that the Wellness Reminders had helped them to take action. Forty-seven percent (47%) agreed that the Web site improved communication with their health care provider, and 50% felt that using the Web site helped them to “stick to their treatment plan.” Substantial proportions, 37% to 42%, were neutral on these 3 items. Although concerns about privacy and security are often cited as a barrier to adoption of PHRs, most (80%) agreed that the pilot Web site adequately protected the privacy of their personal health data, with only 1% disagreeing. The majority (66%) also agreed or strongly agreed that the Web site had helped improve their health care. Lastly, 90% reported that they would recommend use of the site to another Veteran.
This study is the first to examine Veterans’ experience of having access to the full content of their EHR through a Web-based PHR, including clinical notes and laboratory test results. Although survey results revealed considerable interest in many of the My HealtheVet Pilot PHR features, Veterans’ primary motivation for use of the Web site was the ability to access their personal health information from the VHA EHR. Our findings are consistent with other research that demonstrates high patient interest and perceived value in viewing information from the EHR such as clinical notes and test results.25 This level of access to the EHR has been viewed less positively by providers, some of whom believe that shared notes may be confusing or harmful to patients.26 Although patient motivation to use a PHR could be heavily influenced by health care providers, only 6% of Veterans in this study participated because their doctor had suggested it. These findings suggest that limited health care provider engagement and/or beliefs about patient access to EHRs may continue to serve as a barrier to shared health records. Other authors have emphasized the importance of clinician endorsement of PHR use.27 This gap represents an important opportunity for enhancing patient adoption and use of PHRs.
Health and computer literacy are often described as barriers to use of PHRs. Offering training may be an important strategy to support active and effective use of PHRs. This is emphasized by our finding that 33% of respondents identified as intermediate level Internet users. A recent pilot training intervention with low-income Veterans with limited computer skills found that training increased computer skills, frequency of PHR use, and patient activation.28 Training may be especially important for Internet novices.
These survey results provide evidence about the positive impact of providing patients with access to their personal health information from their EHR by a PHR portal system. Veterans’ perceptions about this access indicate increased satisfaction and improved ability to (1) locate relevant information, (2) take action when prompted with reminders, and (3) stick to their treatment plan. The majority of Veterans reported that the pilot Web site helped to improve their health care. Despite the assumption that patients would discuss use of the pilot PHR with their health care providers, we found this was less frequent. Given the relevance of patient PHR use to ongoing health care professional-patient interactions, this may represent a critical communication gap. We speculate that this gap may also have played a role in the substantial proportion of neutral responses, and further research is warranted. Taken together, these findings support the need to more fully integrate patient PHR use within the health care delivery system.
The low response rate for the survey limits its generalizability to other populations and even to the entire population of My HealtheVet pilot users. Given the extended duration of the pilot and reported duration of use, findings may reflect a bias toward Veterans who were motivated, technologically savvy, and long-term pilot Web site users. Further, percentages indicating difficulty or dissatisfaction (eg, disagree or disagree strongly) may be underestimates and indicate important areas for future improvements. In addition, technical problems with the pilot Web site occurred throughout the study period and these issues may have biased survey responses. Moreover, despite these limitations, the survey results provide important insights about patient access to personal health information with an EHR data through an early PHR prototype.
VHA’s early development of a PHR prototype more than a decade ago enabled Veteran participants to have unprecedented access to their personal health information. Veteran feedback suggests that this access provides important value to the Veteran health care experience with perceptions of positive impact on self-management and communication. Today the National My HealtheVet PHR portal serves more than 1.8 million registered users, enabling VHA patients to access and manage their personal health information, refill prescriptions, communicate with their VHA health care team through Secure Messaging, and download their health data using the VHA Blue Button. Given the importance of accessing personal health information expressed by pilot participants, VHA will need to continue to expand the types of data that are available to patients and foster opportunities for communication about that data among patients, their clinicians, and their families.
The authors thank the following VA staff for their contributions to the My HealtheVet Pilot Program and for their efforts in support of this study at their local VA Medical Centers: Dr David Douglas (Portland VA Medical Center), Kay Craddock and Dr Divya Shroff (Washington DC VA Medical Center), Dr Larry Lantinga (VISN 2: VA Healthcare Network Upstate New York), Constance Malik (Tampa VA Medical Center), Diana Akins and Dr John Mason (Bay Pines VA Medical Center).
1. Ferguson T, Frydman G. The first generation of e-patients: these new medical colleagues could provide sustainable healthcare solutions. BMJ. 2004;328:1148–1149
2. Fox S The social life of health information, 2011. Pew Internet & American Life Project. May 12, 2011. Available at: http://pewinternet.org/∼/media/files/reports/2011/pip_social_life_of_health_info.pdf
. Accessed April 1, 2012
3. Ahern DK, Kreslake JM, Phalen JM. What is eHealth: perspectives on the evolution of eHealth research. J Med Internet Res. 2006;8:e4
4. Ball MJ, Lillis J. E-health: transforming the physician/patient relationship. Int J Med Inform. 2001;61:1–10
5. Eysenbach G. Recent advances: consumer health informatics. Br Med J. 2000;320:1713–1716
6. Eysenbach G. What is e-health? J Med Internet Res. 2001;3:e20
7. Murero M, Rice R The Internet and Health Care: Theory, Research, and Practice. 2006 Mahwah Erlbaum
8. Rainie LMurero M, Rice RE. E-health research. The Internet and Health Care. 2006 Mahwah Erlbaum
9. Committee on Quality Health Care in America. Crossing the quality chasm: a new health system for the 21st century. 2001 Washington DC National Academy Press
10. Archer N, Fevrier-Thomas U, Lokker C, et al. Personal health records: a scoping review. J Am Med Inform Assoc. 2011;18:515–522
11. Jones DA, Shipman JP, Plaut DA, et al. Characteristics of personal health records: findings of the Medical Library Association/National Library of Medicine Joint Electronic Personal Health Record Task Force. J Med Libr Assoc. 2010;98:243–249
12. Reti SR, Feldman HJ, Ross SE, et al. Improving personal health records for patient-centered care. J Am Med Inform Assoc. 2010;17:192–195
13. Beard L, Schein R, Morra D, et al. The challenges in making electronic health records accessible to patients. J Am Med Inform Assoc. 2012;19:116–120
14. Tang PC, Ash JS, Bates DW, et al. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc. 2006;13:121–126
15. Bhavnani V, Fisher B, Winfield M, et al. How patients use access to their electronic GP record—a quantitative study. Fam Pract. 2011;28:188–194
16. Ross SE, Lin CT. The effects of promoting patient access to medical records: a review. J Am Med Inform Assoc. 2003;10:129–138
17. Blumenthal D, Tavenner M. The “meaningful use” regulation for electronic health records. N Engl J Med. 2010;363:501–504
18. Centers for Medicare & Medicaid Services. EHR Incentive Program. Available at: https://www.cms.gov/EHRIncentivePrograms/
. Accessed April 1, 2011
19. Ahern DK, Woods SS, Lightowler MC, et al. Promise of and potential for patient-facing technologies to enable meaningful use. Am J Prev Med. 2011;40(5S2):S162–S172
20. Brown SH, Lincoln MJ, Groen PJ, et al. VistA-U.S. department of veterans affairs national-scale HIS. Int J Med Inform. 2003;69:135–156
21. Kizer KW, Dudley RA. Extreme makeover: Transformation of the Veterans health care system. Annu Rev Public Health. 2009;30:319–339
22. Nazi K. Veterans’ voices: use of the American Customer Satisfaction Index (ACSI) survey to identify My HealtheVet Personal Health Record user’s characteristics, needs, and preferences. J Am Med Inform Assoc. 2010;17:203–211
23. Nazi K, Hogan T, Wagner T, et al. Embracing a health services research perspective on personal health records: lessons learned from the VA My HealtheVet system. J Gen Intern Med. 2011;25(suppl):62–67
24. Hogan TP, Wakefield B, Nazi K, et al. Promoting access through complementary eHealth technologies: recommendations for VA’s telehealth and personal health record programs. J Gen Intern Med. 2011;26(suppl):628–635
25. Walker J, Leveille SG, Ngo L, et al. Inviting patients to read their doctors’ notes: patient and doctors look ahead. Ann Intern Med. 2011;155:811–819
26. Ross SE, Todd J, Moore LA, et al. Expectations of patients and physicians regarding patient-accessible medical records. J Med Internet Res. 2005;7:e13
27. Jimison H, Gorman P, Woods S, et al. Barriers and Drivers of Health Information Technology Use for the Elderly, Chronically Ill, and Underserved.Evidence Report/Technology Assessment No. 175 (Prepared by the Oregon Evidence-based Practice Center under Contract No. 290-02-0024). AHRQ Publication No. 09-E004. 2008 Rockville, MD Agency for Healthcare Research and Quality
28. McInnes DK, Solomon JL, Shimada SL, et al. Development and evaluation of an Internet and personal health record training program for low income patients with HIV and hepatitis C. Med Care. 2013;51:S62–S66