Opportunities and Challenges for Improving the Patient Experience in the Acute and Post–Acute Care Setting Using Patient Portals: The Patient’s Perspective

To realize the vision of patient-centered care, efforts are focusing on engaging patients and “care partners,” often a family caregiver, by using patient-facing technologies.^1-4 Web-based patient portals linked to the electronic health record (EHR) provide patients and care partners with the ability to access personal health information online and to communicate with clinicians. In recent years, institutions have been increasing patient portal offerings to improve the patient experience, promote safety, and optimize healthcare delivery.^5-7

The adoption of patient portals has been driven by federal incentive programs (Meaningful Use), efforts by the Center for Medicare and Medicaid Services, and the Office of the National Coordinator for Health Information Technology to improve patient outcomes and the transition toward value-based reimbursement.^2,8,9 The vast majority of use has been in ambulatory settings; use for acute care is nascent at best.¹⁰ Among hospitalized patients, few bring an internet-enabled computer or mobile device to access personal health records online.¹¹ However, evidence suggests that care partners will use portals on behalf of acutely ill patients.⁴ As the Caregiver Advise, Record, Enable Act is implemented, hospitals will be required to identify patients’ care partners during hospitalization, inform them when the patient is ready for discharge, and provide self-management instructions during the transition home.¹² In this context, understanding how best to leverage acute care patient portals will be important to institutions, clinicians, and vendors.

The literature regarding acute care patient portals is rapidly growing.^4,10 Hospitalized patients have unmet information and communication needs, and hospital-based clinicians struggle to meet these needs in a timely manner.^13-15 In general, patients feel that using a mobile device to access personal health records has the potential to improve their experience.¹¹ Early studies suggest that acute care patient portals can promote patient-centered communication and collaboration during hospitalization, including in intensive care settings.^4,16,17 Furthermore, the use of acute care patient portals can improve perception of safety and quality, decrease anxiety, and increase understanding of health conditions.^3,14 Although early evidence is promising, considerable knowledge gaps exist regarding patient outcomes over the acute episode of care.^10,18

A clear area of interest is accessing acute care patient portals via mobile technology to engage patients during recovery from hospitalization.^4,11 Although we do not yet know whether use during care transitions will favorably impact outcomes, given the high rate of harm after discharge, this seems likely.¹⁹ The few studies evaluating the effect on validated measures of engagement (Patient Activation Measure) and hospital readmissions have not shown demonstrable improvement to date.^20,21 Clearly, optimizing acute care patient portals with regard to patient-clinician communication, as well as the type, timing, and format of information delivered, will be necessary to maximize value.^4,22

From the patient’s perspective, there is much we can learn.²³ Is the information that is presented pertinent, timely, and easy to understand? Will the use of portals detract from face-to-face interactions? Does greater transparency foster more accountability? Achieving an appropriate balance of digital health-information sharing for hospitalized patients is challenging given the sensitivity of patient data when diagnoses are uncertain and treatments are in flux.^4,24 These questions must be answered as hospitals implement acute care patient portals.

To start addressing knowledge gaps, we established a task force of 21 leading researchers, informatics and policy experts, and clinical leaders. The Acute Care Patient Portal Task Force was a subgroup of the Libretto Consortium, a collaboration of 4 academic medical centers established by the Gordon and Betty Moore Foundation to design, develop, and implement technologies to engage patients, care partners, and providers in preventing harm in hospital settings. Initially, we were challenged with assessing stakeholders’ perspectives from early adopter institutions. We learned that acute care patient portals must offer an integrated experience across care settings, humanize the patient-clinician relationship, enable equitable access, and align with institutional strategy to promote sustainability.¹⁹