Among experienced users of a live pediatric PCHR we found moderate levels of willingness to share stored data with out-of-hospital providers and low levels of absolute reticence. We found moderately high levels of willingness to share PCHR data with public health authorities and low levels of absolute reticence. Overall, respondents were half again more likely to report they would share all of their PCHR data with a public health authority than with other providers. More than half of our sample was willing to share PHI stored in a PCHR with an out-of-hospital provider. We did not ask patients to share physician notes. Walker et al., found higher reticence for this for patients using a portal .
While a majority of respondents reported they would share information about every health topic queried, reticence varied by topic. For both sharing targets areas of least reticence concerned contagious illness, which may reflect norms conducive to sharing under mandatory reporting rules and/or goals of treatment and containment among social contacts [37, 38]. For both sharing targets, areas of peak reticence pertained to money, family issues, and mental health. Odds for reticence in these areas were very high as hypothesized, and markedly high as well for information about alcohol and substance use, genetic information and STDs. While present for both targets, reticence affected a greater number of topics for sharing with providers.
Quantitative and qualitative reports suggest that reticence to share with both stakeholders reflects distrust in how data might be used, concern about disclosure and attendant risks for stigma and discrimination, lack of transparency and, for public health sharing only, concern for the preservation of anonymity and ability of a government agency to treat shared data with appropriate sensitivity. Stigma and discrimination are well-documented [39–43] making reticence a self-protecting impulse for some respondents. However, reticence was expressed for sharing data about social and behavioral health problems that are prevalent, poorly screened, and related to service use and adherence generally [44–47]. Thus, reticence may handicap decision making by clinical and public health authorities whose actions are guided by patient-reported and/or shared data, and could undermine use of the PCHR as a virtual medical home that serves as a bridge for collaborating clinicians .
Reticence varied by reported income for sharing with providers only, in which case lower income respondents expressed less reticence than higher income respondents. This is a provocative finding that could reflect myriad factors, including possibly lower expectations about one’s ability to control personal health information among lower income respondents as well as higher expectations about one’s ability to obtain private, personally-mediated care for sensitive or stigmatizing issues among higher income respondents. Income gradients are under-explored with regard to data sharing, and have not been found with respect to use of personal health record systems in general .
Reticence to share, especially with outside providers, seems inconsistent with perceived value areas of the PCHR—namely, to increase access to and centralization of health data, and to foster communication among providers. The perceived value of the PCHR in these areas is offset by concerns for clinical relevance, trust, discrimination and unauthorized disclosure of data. Findings underscore the need for transparent and trustworthy sharing mechanisms and comprehensive patient education on the risks and benefits of sharing PCHR information.
This is a single site study—findings may not generalize to other populations. We assessed attitudes across several but not all health areas, for two main but not all possible targets. A majority of eligible respondents participated. Demographic data about patients were available for the source population of PCHR users in aggregate. Comparison of aggregate sample characteristics for respondents and the source population identified no differences in patient race, length of treatment at the hospital or in-state geographic residence but found that patients in the source population were older. Available data do not afford direct comparison of responders and non-responders. Survey research has inherent limitations around capturing nuance and this may be important to understanding sharing of information from a still novel technology. Analyses of narrative data and reports about reasons for reticence are included to deepen our understanding of sharing. Alternative approaches were not used but might include surveying respondents about sharing under specific patient scenarios or focus group research.