Although current dissemination of PHRs into clinical practice is limited, the advocacy of stakeholders groups and demand from patients may drive increased adoption of this patient-centered e-Health intervention in the future. We found that during two years of follow-up, only slightly more than one third of a stable cohort of managed care enrollees registered with an available PHR. Further, we noted important differences in use of KP.org
by race/ethnicity, with whites having higher rates of use than African Americans. If our results of a digital divide for PHRs are confirmed, and if evidence of the effectiveness of PHRs in improving access, quality and safety increases, then PHRs have the potential to widen disparities in health care and health, at least in the short-term. Appropriate attention to further research on the causes of this gap in use is critical.
In a 2008 JAMIA article, a research agenda for PHRs was proposed. 8
The research agenda called for studies of adoption in vulnerable populations where patient (demographics) and organization adoption factors were explored. 8
Although research on provider-centered informatics tools such as EHRs and decision support systems is extensive, less research has been conducted on the effectiveness of e-Health interventions that include patient participation 2,17–23
or are designed to increase patient-centered care. 24,25
Previous reports have noted high satisfaction with personal health records. 20,21,26
the Palo Alto Medical Foundation implemented one of the earliest PHRs in 2002. In a survey, 914 users of this PHR rated access to laboratory test results as the most valuable use of the system, and users also valued ability to request refills and access patient education materials. 20
Because of these previous positive reports and the national emphasis on patient-centered technology, we were somewhat surprised at the low rates of registration, 34.7%, over 2 years of follow-up. The public and providers may also be waiting for more evidence of the benefit of these systems before adoption.
There has been a sustained digital divide in the national population. 27
Racial/Ethnic minorities, those with lower education, older, and rural patients have been found to have lower access to information technology and also have lower computer literacy. The difference by race/ethnicity in registering for KP.org
was robust to adjustment by multiple factors and to stratification by education. We did not have more detailed socioeconomic information to adjust our analysis. But, the socioeconomic variation in this sample is likely less than that in the general population, because our sample is truncated to only patients enrolled in KPGA. The finding that among those with graduate degrees, African Americans were less likely to enroll (HR = 0.674) than whites suggests that factors other than education, computer literacy, and computer access are driving the difference. Mode of survey administration, our marker for a digital divide, also did not attenuate our results. One might speculate other patient-level variables, cultural or psychosocial factors affecting trust in the medical system or differences in privacy concerns may be part of the racial/ethnic differences in KP.org
registration. Our research was not able to address the potential mediating effect of these factors.
However, the differences in KP.org
registration by race/ethnicity could also result from differences in health system processes and provider-patient interactions. It could be that African Americans are more likely to be seen by KPGA primary care teams that are less likely to market KP.org
. We did not find a strong ICC at the clinic level; but, differences among providers within a clinic in marketing the PHR are certainly possible. Our analysis cannot address variations in patient-provider interaction as a cause of the difference by race. However, further research using direct observation and qualitative methods is needed to further explore and ameliorate potential disparities in use of the PHR technology.
Interestingly, we did not find evidence of disparities in registration to KP.org
by age. The age gap in the digital divide has been narrowing more rapidly than other disparities. In this study, lower propensity to access information technology by older persons may be offset by the older patients' higher number of chronic diseases. Chronic diseases seem to be driving increased access in this study. Several reports have suggested that personal health records, doctor–patient electronic messaging, and other e-Health interventions might be most valuable for those with chronic conditions. 9,12,28–30
In fact, there is a complex association between technology access and chronic disease. Based on national survey data from the Pew Internet and American Life project, those with chronic diseases report lower rates of technology access overall, but those with chronic disease who do attain access are more likely to seek out health information online, compared with those without a chronic condition. 31
This Pew survey also suggests that the information that those with chronic disease access is more likely to influence their medical decisions.
Our study has limitations, including that the study is limited only to patients in Kaiser Permanente and accessing a single PHR. Thus, these results may not be strictly generalizable to other PHRs. As noted, although enrollment in Kaiser is a limitation, it in some ways truncates the diversity of the sample and makes the variations by ethnicity even more stunning. Conducting this study in Georgia provided access to a larger number of African Americans than other samples with PHR access. Another important limitation is the potential for unmeasured confounding common to all cohort studies. This cohort study is limited to the covariates included in the past survey. The KPGA health survey was designed and conducted in 2005, and does not include important covariates such as computer literacy or Internet access, although we have used preference for completing the baseline survey online as a proxy. Also, we were not able to analyze other ethnic minorities as separate groups because of small numbers. Evaluation of variations in access by Hispanics and other minorities is equally important.