Over the past decade, most hospitals have replaced paper-based medical records with electronic health charts. An electronic medical record (EMR) is a computer-based storehouse of a patient’s medical information: it contains a patient’s health problems, health professionals’ notes, laboratory results, prescribed medications, treatment plans, and other relevant health information [1]. Research suggests that the use of EMRs can improve patient care by increasing accuracy, communicating information rapidly, and facilitating care coordination among a patient’s multiple care providers [1–6]. Given these benefits, governmental support initiatives, most notably the American Recovery and Reinvestment Act of 2009, have allocated billions of dollars in funds to encourage hospitals to make the transition to EMR systems [1].
Despite these incentives, many psychiatric departments are reluctant to embrace electronic medical records [7–10]. Psychiatrists are significantly less likely to use EMRs compared to other physicians [11], and they are the least likely among all medical specialties to apply for governmental EMR incentives [12]. The low rate of EMR use among psychiatrists is partly due to increased concern about the privacy and security of psychiatric information, which is considered to be highly sensitive because psychiatric disorders are associated with high levels of stigma [13–16]. Consequently, psychiatric information is allotted special protections in an attempt by psychiatrists to insulate their patients from the effects of stigma and discrimination [5, 17, 18].
Despite concerns that the incorporation of psychiatric information into EMRs may negatively impact psychiatric patients’ privacy, research suggests that psychiatric EMRs improve patients’ mental health care and health outcomes. In one study, inclusion of depression screening information in an EMR resulted in increased treatment of depression and follow-up care by a primary care physician [19]. Similar results have been found for the screening and treatment of bipolar disorder [20]. In another study, hospitals that utilized electronic psychiatric records and made them accessible to other non-psychiatric treating physicians reported lower readmission rates among psychiatric patients [2].
Dissemination of a patient’s psychiatric health information to all of their treating physicians may be particularly important for those patients suffering from non-psychiatric illnesses that have high rates of psychiatric comorbidities, such as multiple sclerosis (MS). MS is a chronic, neuroinflammatory disease that carries a high rate of clinical depression, with lifetime risk estimated at 50% [21, 22]. Because the course of MS and depression are often related, it is critical for both their medical and psychiatric care to be integrated and coordinated [23].
There is a dearth of research conducted on the attitudes of people with MS toward sharing psychiatric information electronically. Prior research in other patient populations has established that, although there are differences among patients’ willingness to share “sensitive” vs. “non-sensitive” medical information, the majority of patients are willing to have their sensitive health information shared through EMR systems [24]. In one study, 70% of patients were willing to share sensitive information with their doctors and nurses, and 78% of patients were willing to share non-sensitive medical information [25]. Caine and Hanania similarly found that, among a sample of patients whose medical records contained sensitive information, 95% were willing to share “less-sensitive” information, and 76% were willing to share “highly sensitive” information [26]. In one of the few studies specifically addressing psychiatric information, only 5% of patients surveyed declined to share their psychiatric records electronically [27]. An understanding of patient willingness to share information of varying sensitivity is a good start to understanding the long-term acceptability and feasibility of EMRs, and further studies focusing on experiences of stigma can elucidate these patterns in EMR sharing.
To our knowledge, no study to date has examined whether experiences of health-related stigma account for patients’ attitudes toward sharing of their health information in EMRs. Given that people with MS can benefit greatly from comprehensive, multidisciplinary care—including collaborative psychiatric care—the objective of the present study was to clarify attitudes toward EMR sharing of psychiatric information by people with MS, and how these attitudes relate to experiences of stigma. The first aim of this study was to compare MS patients with and without co-occurring psychiatric diagnoses in terms of their willingness to share their diagnoses and medications through EMRs. The second aim of the study was to examine the association between patients’ experiences of stigma (both self-stigma and societal stigma) and their willingness to share their diagnoses and medications through EMRs. We hypothesized that the majority of participants would be willing to share both medical and psychiatric information, but that those patients who had first-hand knowledge of having a psychiatric illness would be more willing to share their psychiatric records than patients without a psychiatric diagnosis. The implications of this research to inform health care providers about the preferences of their patient regarding sharing of their medical and psychiatric health information can help prevent miscommunication that can negatively impact patients’ healthcare.