- Patients need better assurances of PHI and health data security before opting into a health information exchange or other patient data sharing model, according to a study published in the Journal of Medical Internet Research.
Patient data sharing and HIEs are important aspects of healthcare, particularly as digital patient records have become the norm.
HIEs are tools that allow providers to access patient information from other disparate providers for the purposes of treating a patient. HIEs are especially useful in times of medical emergency where patients and providers do not have the time to manually obtain patient records.
HIEs rely on patient buy-in, the research team from California State University Long Beach noted. Both opt-in and opt-out HIEs require patients to make conscious decisions about whether to share their PHI with other providers via an HIE.
“Patients’ information cannot be shared, unless patients agree to share via an HIE,” the research team explained. “The value of HIE, therefore, is directly related to the relative ease of sharing among providers, payers, and patients.”
While it is difficult to measure how many patients have or have not participated in an HIE due to variable statewide regulations, the researchers maintained that patients who do not participate in an HIE may experience care quality issues.
“Patients’ decisions not to share may result in medical errors and undesired health outcomes,” the researchers explained. “Our aspiration to understand the psychology behind patients’ decision comes from our desire to address barriers to sharing and enhance motivators of sharing to help patients make better choices for their own health.”
The research team looked at over 1,600 patient responses to the Health Information National Trends Survey (HINTS) to gain a better understanding of reasons why patients do not share their health data. The team combed through the data for patient responses about security concerns, patient activation, patient-provider relationships, and issue involvement, or how relevant a specific issue is to the patient.
The data showed that patient privacy was the biggest concern among patients considering sharing their health information. Patient activation, issue involvement, and patient-provider relationships also had impacts on patient decisions to share with an HIE, but to a lesser degree than security concerns.
Patient security concerns should reframe how healthcare providers approach patient education about data sharing, the researchers said.
“This finding provides practical implications to health care providers and policy makers of the significance of this concern,” the research team explained. “Health care providers and policy makers should prioritize their efforts and focus on addressing individuals’ privacy concerns. In addition, health care providers should invest in educating people on the privacy policies that protect patients’ information and privacy.”
There is currently a push toward educating patients about the benefits of patient data sharing, the researchers noted. Patient education campaigns usually focus on the patient safety and care coordination advantages of data sharing, which while important, do not fill the entire scope of patient education necessities.
“Our study shows that there should be a shift in patient education, with a more salient focus on addressing privacy concerns,” the researchers pointed out. “By making patients more aware of existing privacy policies and security measures in place, the health care providers are creating an environment where the patients are more likely to share their PHI, and therefore still able to achieve cost and error reduction benefits.”
The researchers also acknowledged the importance of patient activation during data sharing and HIE discussions. Patient activation is tied to propensity to share in an HIE, and is a static measure. Assessing patient activation at the start of a care encounter will help providers better target other efforts, the researchers said.
Overall, the researchers acknowledged the importance of both the patient and the provider being more informed during the data sharing discussion. Providers must better understand patient activation levels. This will help providers better target motivation strategies for opting into an HIE.
Likewise, providers need to expand patient education efforts to include information about data privacy on an HIE and other data sharing platforms. This will arm the patient with more information needed to make a decision.
“We suggest that physician education is as important as patient education,” the research team concluded. “Physicians who are aware of the dimensions of the patient-physician relationship can improve the said relationship, leaving the patient more prone to PHI sharing, achieving better medical decisions, reduction in medical errors, and cost benefits.”