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Federal meaningful use standards are promoting adoption of online portals to personal health records (PHRs). However, relatively little is known regarding barriers and facilitators for vulnerable groups such as persons living with human immunodeficiency virus (PLWH).
The objective of this study was to assess barriers and facilitators to use of online PHRs among PLWH.
We conducted formative research using a written waiting room survey among 120 PLWH regarding barriers and facilitators of portal PHR use. We supplemented findings with data collected from a PLWH focus group, where some members had personal experience with use of a portal.
The survey had 90 respondents. Eight PLWH participated in the focus group. Most patients (77/90, 86%) reported having at least some experience using the Internet and most expressed interest in features offered by the portal. Notably, 70% (63/90) expressed some interest in being taught how to use it to communicate with their provider. Focus group themes reinforced these findings, but also voiced concern regarding access to private computers.
Many PLWH in our sample have experience using computers and most are interested in PHR features. However, computer or broadband access and privacy are important barriers.
Personal health records (PHRs), typically accessible through secure Web-based portals, represent a practical way for patients to access their health information anytime and anywhere [
Mounting data point to the growing sociodemographic disparities in patients’ use of Web-based portals for PHRs [
Barriers to Web-enabled technology can be largely grouped into 3 categories, including cost, knowledge and attitude, and skills [
We conducted formative research to understand the barriers and facilitators on PLWH in using key features associated with PHRs. To obtain a more complete picture, we supplemented the survey with PLWH with input from a PLWH focus group, where members had varied experience with online PHR.
Over a 2 week period, 120 written surveys available in English and Spanish were distributed to patients 18 years and older by the front staff during their appointments at an HIV clinic that serves roughly 1000 HIV patients. Survey questions were adapted from the Health Information National Trends Survey (HINTS) and addressed barriers and facilitators of Web use and the level of interest to key PHR features, such as scheduling appointments, requesting refills, viewing test results, and exchanging electronic messages with one’s providers [
An online PHR focus group was formed by 8 PLWH participants recruited by offices and organizations that provided care for PLWH. A trained research assistant conducted the group, which lasted for one hour. All participants provided verbal informed consent and were compensated for their time and travel. The research assistant began with a brief presentation of Web-enabled PHRs using slides that included screenshots of a PHR. (
We examined univariate responses for each item and collapsed categories to create dichotomous categories. We compared responses across items using chi-square statistics. We examined independent associations among multiple factors using logistic regression.
The principal investigator KF and the research assistant analyzed the focus group using qualitative methods. We assigned participant responses to de novo categories and then developed codes for each category. These codes included specific barriers to use of PHR portals (lack of physical access, privacy concerns, computer literacy, and patient interest) and facilitators (pro-active engagement, easy-to-use technology, training, and privacy). The codes were then applied to the entire data for analysis [
Test results in personal health records.
Prescription refill requests in personal health record.
Of the 90 patients (
Demographic characteristics.
Patient characteristic (N=90) | n (%) | |
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< 35 | 24 (29) |
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35-49 | 33 (39) |
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> 50 | 27 (32) |
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Female | 32 (36) |
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Male | 54 (61) |
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Transgendered | 3 (3) |
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Black | 38 (43) |
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Hispanic/Latino | 7 (8) |
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White | 39 (44) |
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Other | 5 (6) |
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< high school | 27 (30) |
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high school | 31 (34) |
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> high school | 36 (36) |
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Single | 57 (63) |
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Married | 16 (18) |
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Divorced/separated | 14 (16) |
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Widowed | 3 (3) |
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Medicaid | 32 (39) |
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Private | 18 (22) |
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ADAP | 17 (20) |
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Other | 15 (18) |
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None | 1 (1) |
Surprisingly, most respondents reported at least monthly Internet use despite only about half owning a computer (
Internet use and barriers to use.
Internet use and barriers (N=90) | n (%) | |
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77 (82) |
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Own computer | 45 (52) |
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Smartphone | 7 (8) |
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Work computer | 12 (14) |
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Friend/Family computer | 15 (17) |
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Library computer | 2 (2) |
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Other | 5 (6) |
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Do not know how to use | 5 (19) |
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Costs too much to use | 16 (18) |
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Not interested in using | 6 (22) |
Most respondents reported at least some interest in obtaining test results and scheduling appointments online (
Interest in patient portal features and assistance.
Features (N=90) | n (%) | |
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Obtaining test results online | 76 (86) |
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Schedule appointments online | 63 (73) |
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Refilling prescriptions online | 74 (83) |
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Use a computer in waiting room | 77 (86) |
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Having someone teach you how to use it to communicate with your doctor | 54 (70) |
The focus group participants cited the lack of Internet access and not knowing how to use these online PHRs as barriers, but mentioned an additional barrier to use of online portals—privacy when accessing a portal outside of one’s home. Most of the participants reported they did not have home Web access. While the group acknowledged the availability of Web access through libraries and homes of friends and family, most were concerned about using a public computer or a computer in someone else’s home to access PHR. One participant commented, “You wouldn’t try to access your online bank account in public. Why would you access your personal health record there?” When asked about use of computers within clinics, participants preferred use of a small hand held device such as an iPad to that of a desktop computer because they felt it would be easier to preserve privacy by concealing personal information on the screen and also easier to learn to use. When the issue of computer literacy was raised, participants agreed that this represented a barrier but did not view it as insurmountable. Many felt that it would be feasible to train patients in 10-15 minutes to use a touch screen device such an iPad on-site at clinics.
PLWH in our sample reported notable interest in use of Web-enabled PHRs. This finding is consistent with findings from national surveys that document significant interest in PHRs [
Ensuring that unequal adoption of Web-based PHRs does not worsen existing disparities requires practical strategies to address incentives and various barriers [
Second, the barriers of computer skills and self-efficacy need to be resolved [
These findings are limited by our methods. Our sample was based on recruitment from a waiting room. This precludes assessment of response bias. Thus, it is possible that patients with the lowest computer literacy might have been less likely to respond, perhaps viewing the survey as less relevant to them. Similarly, we recruited patients from a single practice. Although the demographic characteristics of the responders are similar to that of PLWH nationally we cannot be sure that the findings generalize to other settings. Last, we conducted only one focus group. It is possible that additional themes would emerge with additional groups.
In conclusion these findings provide cause for some cautious optimism. They suggest that PLWH are interested in features offered by PHR, but that significant barriers remain. Some of these barriers can potentially be overcome through on-site online PHR access coupled to training.
AIDS drug assistance program
Health Information National Trends Survey
human immunodeficiency virus
personal health record
person living with HIV
This study was supported by the Center to Reduce Cancer Health Disparities of NCI (3U01CA116924-05S1,S4), The University of Rochester Center for Community Health, the University of Rochester Developmental Center for AIDS Research Grant P30 AI078498 (NIH/NIAID), and the University of Rochester School of Medicine and Dentistry.
None declared.