gms | German Medical Science

Introduction: Patient-centered care has gained importance in both research and clinical practice. Patient-centeredness is based on concepts such as patient empowerment, patient participation or shared decision-making [1], [2]. Both patient information and patient involvement in care decisions are seen as precondition for patient-centered care.

To facilitate patient information and patient involvement and to support patient-centered care, healthcare organizations are increasingly offering their patients access to the patient data that is stored in the institution-based electronic health record (EHR). The patient can access this data, read and print it, or download and integrate it into any (electronic or paper-based) type of patient-held record [3]. The interface providing EHR access (alone or with additional functionalities) is called a patient portal [4]. A uniform theory or clear evidence of how EHR access might contribute to patient-centered care and related concepts such as patient empowerment or patient participation does not exist. A review of 2012 found that very few studies associated use of the patient portal, or its features, to improved outcomes [5].

The objective of the Cochrane review is to assess the effects of providing access to EHR for adult patients on a range of patient, patient-provider, and health resource consumption outcomes.

Methods: Randomized controlled trials (RCT) on the effects on providing EHR access to adult patients were systematically reviewed. A patient portal taxonomy was developed, describing seven functionalities: Access to health-related data; health care reminders; transactional services; bilateral communication; patient self-documentation and sharing; disease management; and general health-related education.

As primary outcome, we included impact of EHR access on patient knowledge and understanding, patient empowerment, patient adherence, and patient satisfaction as well as adverse events. As secondary outcomes, we included health-related quality of life, health related outcomes, psychosocial health outcomes, health resource consumption and patient-provider communication. We systematically searched in electronic libraries including Medline, Embase and CINAHL, in proceedings of Medinfo, AMIA, and MIE, in major health informatics journals, and also searched for studies cited in systematic reviews on patient portals and in identified RCTs. Data were extracted using the software Covidence regarding study characteristics, risk of bias, and outcome. Details of the protocol have already been published [6].

Results: We identified eleven studies that represent distinct RCTs on EHR access for patients. Identified studies were very heterogeneous regarding diseases of included patients (hypertension, diabetes, asthma, glaucoma, congestive heart failure, IVF patients, or unspecific) and regarding outcome measures (e.g. frequently patient adherence and health related outcomes, less often patient satisfaction and patient empowerment), making meta-analysis challenging. Seven RCTs took place in the U.S., two in Canada, one in Japan, and one in the Netherlands. Data extraction and further analysis are just under way. Most studies were conducted in the years before 2010, indicating a scarcity of newer studies.

Discussion: This review will inform on real world decisions about whether healthcare organizations should offer EHR access to their patients or not, and which impact can be expected on patient-related outcome.

The authors declare that they have no competing interests.

The authors declare that an ethics committee vote is not required.