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
DRIVERS OF ADOPTION
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.
ACUTE CARE PATIENT PORTAL TASK FORCE
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
The opportunities identified include acclimatizing and assimilating to the hospital environment (reviewing policies and patient rights) and facilitating self-education and preparation by linking to personal health information and providing structured guidance at transitions.4 For example, a care partner of an incapacitated patient may watch a video to orient to the intensive care unit, navigate educational content linked to the patient’s admission diagnosis (pneumonia) entered in the EHR, view the timing of an upcoming imaging study (chest computed tomography scan), and complete a standardized checklist prior to discharge.
The main challenges we identified include ensuring accuracy of hospital-, unit-, and patient-level information, addressing information overload, configuring notification and display settings to optimize the user experience, presenting information at an appropriate health literacy level,4,21 and addressing security and privacy concerns when expanding access to family members.24
Respect and Boundaries
Opportunities identified include supporting individual learning styles by using interactive features of mobile devices to improve comprehension for visual, auditory, and tactile learners and reinforcing learning through the use of various types of digital media.25-27 For example, a visual learner may view a video tutorial for a newly prescribed medication. A tactile learner may prefer to use interactive graphical displays that exploit multidimensional touch capabilities of mobile devices to learn about active conditions or an upcoming procedure. An auditory learner may choose to use intelligent personal assistants to navigate their plan of care (“Hey Siri, what is my schedule for today?”). By addressing the learning preferences of patients and time constraints of clinicians, institutions can use acute care patient portals to promote more respectful interactions and collaborative decision-making during important care processes, such as obtaining surgical consent.28,29
We also identified opportunities to facilitate personalization by tailoring educational content and by enabling the use of patient-generated health data collected from wearable devices. For example, patients may prefer to interact with a virtual advocate to review discharge instructions (“Louis” in Project Re-Engineered Discharge) when personalized to their demographics and health literacy level.30-32 Patients may choose to upload step counts from wearable devices so that clinicians can monitor activity goals in preparation for discharge and while recovering afterwards. When supported in these ways, acute care patient portals allow patients to have more meaningful interactions with clinicians about diagnoses, treatments, prognosis, and goals for recovery.
The main challenges we identified include balancing interactions with technology and clinicians, ensuring clinicians understand how patients from different socioeconomic backgrounds use existing and newer technology to enhance self-management, assessing health and technology literacy, and understanding individual preferences for sharing patient-generated health data. Importantly, we must remain vigilant that patients will express concern about overdependence on technology, especially if it detracts from in-person interaction; our panelists emphasized that technology should never replace “human touch.”
Patient and Family Empowerment
The opportunities identified include promoting patient-centered communication by supporting a real-time and asynchronous dialogue among patients, care partners, and care team members (including ambulatory clinicians) while minimizing conversational silos4,33; displaying names, roles, and pictures of all care team members4,34; fostering transparency by sharing clinician documentation in progress notes and sign-outs35; ensuring accountability for a single plan of care spanning shift changes and handoffs, and providing a mechanism to enable real-time feedback.
Hospitalization can be a vulnerable and isolating experience, perpetuated by a lack of timely and coordinated communication with the care team. We identified opportunities to mitigate anxiety by promoting shared understanding when questions require input from multiple clinicians, when team members change, or when patients wish to communicate with their longitudinal ambulatory providers.4,34 For example, inviting patients to review clinicians’ progress notes should stimulate more open and meaningful communication.35 Furthermore, requesting that patients state their wishes, preferences, and goals could improve overall concordance with care team members.36,37 Empowering patients and care partners to voice their concerns, particularly those related to miscommunication, may mitigate harm propagated by handoffs, shift work, and weekend coverage.38,39 While reporting safety concerns represents a novel mechanism to augment medical-error reporting by clinicians alone,23,40 this strategy will be most effective when aligned with standardized communication initiatives (I-PASS) that have been proven to reduce medical errors and preventable adverse events and are being implemented nationally.41 Finally, by leveraging tools that facilitate instantaneous feedback, patients can be empowered to react to their plan (ranking skilled nursing facility options) as it is developed.
The main challenges we identified include managing expectations regarding the use of communication tools, accurately and reliably identifying care team members in the EHR,34 acknowledging patients as equal partners, ensuring patients receive a consistent message about diagnoses and therapies during handoffs and when multiple consultants have conflicting opinions about the plan,37 and addressing patient concerns fairly and respectfully.
RECOMMENDATIONS AND CONCLUSIONS
In summary, the patient-centered themes we identified serve as guiding principles for institutions, clinicians, and vendors who wish to use patient portals to improve the acute and postacute care patient experience. One central message resonates: Patients do not simply want access to their health information and the ability to communicate with the clinicians who furnish this information; they want to feel supported, respected, and empowered when doing so. It is only through partnership with patients and their advocates that we can fully realize the impact of digital technologies when patients are in their most vulnerable state.
The authors thank their colleagues and the patient and family advocates who contributed to this body of work as part of the Acute Care Patient Portal Task Force and conference: Brittany Couture; Ronen Rozenblum, PhD, MPH; Jennifer Prey, MPhil, MS, PhD; Kristin O’Reilly, RN, BSN, MPH; Patricia Q. Bourie, RN, MS, Cindy Dwyer, RN, BSN,S; Ryan Greysen, MD, MHS, MA; Jeffery Smith, MPP; Michael Gropper, MD, PhD; Patricia Dykes, RN, PhD; Martha B. Carnie; Jeffrey W. Mello; and Jane Webster.
Anuj K. Dalal, MD, David W. Bates, MD, MSc, and Sarah Collins, RN, PhD, are responsible for the conception or design of the work; acquisition, analysis, or interpretation of data; drafting the work or revising it critically for important intellectual content; and final approval of the version to be published. The authors agree to be accountable for all aspects of the work and to ensure that questions related to the accuracy or integrity of the work are appropriately investigated and resolved. This work was supported by a grant from the Gordon and Betty Moore Foundation ([GBMF] #4993). GBMF had no role in the design or conduct of the study; the collection, analysis, or interpretation of data; or preparation or review of the manuscript. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of GBMF. The authors report no conflicts of interest.