Patient Portals and Patient Engagement: A State of the Science Review

Background Patient portals (ie, electronic personal health records tethered to institutional electronic health records) are recognized as a promising mechanism to support greater patient engagement, yet questions remain about how health care leaders, policy makers, and designers can encourage adoption of patient portals and what factors might contribute to sustained utilization. Objective The purposes of this state of the science review are to (1) present the definition, background, and how current literature addresses the encouragement and support of patient engagement through the patient portal, and (2) provide a summary of future directions for patient portal research and development to meaningfully impact patient engagement. Methods We reviewed literature from 2006 through 2014 in PubMed, Ovid Medline, and PsycInfo using the search terms “patient portal” OR “personal health record” OR “electronic personal health record”. Final inclusion criterion dictated that studies report on the patient experience and/or ways that patients may be supported to make competent health care decisions and act on those decisions using patient portal functionality. Results We found 120 studies that met the inclusion criteria. Based on the research questions, explicit and implicit aims of the studies, and related measures addressed, the studies were grouped into five major topics (patient adoption, provider endorsement, health literacy, usability, and utility). We discuss the findings and conclusions of studies that address the five topical areas. Conclusions Current research has demonstrated that patients’ interest and ability to use patient portals is strongly influenced by personal factors such age, ethnicity, education level, health literacy, health status, and role as a caregiver. Health care delivery factors, mainly provider endorsement and patient portal usability also contribute to patient’s ability to engage through and with the patient portal. Future directions of research should focus on identifying specific populations and contextual considerations that would benefit most from a greater degree of patient engagement through a patient portal. Ultimately, adoption by patients and endorsement by providers will come when existing patient portal features align with patients’ and providers’ information needs and functionality.


Weingart [10]
Descriptive 1 New enrollees logged in most frequently in the first month; most often examined laboratory and radiology results and sent clinical messages to their providers. Enrollees were younger and more affluent and had fewer medical problems than non-enrollees.

2007
Hess [102] Mixed-Method 1 Patients felt that the system would enhance communication with the office, and that the reminder system would be helpful; liked having access to laboratory tests remotely; frustrated when tests were not released and messages not answered.

2007
Keselman [11] Mixedmethod 1 1 1 1 Providers' notes, lab test results and radiology reports were the most difficult records sections for lay reviewers; medical terminology, lack of explanations of complex concepts (e.g. lab test ranges) was the most common comprehension barriers. Significant themes: 1) issues about teens' control of their own healthcare 2) enthusiasm about the use of a portal to access providers, seek health information, and make appointments 3) concerns about confidentiality.
2008 Grant [13] RCT 1 1 Pre-visit use of patient portal increased rates of diabetes-related medication adjustment. Low rates of portal registration and good baseline control among participants limited the intervention's impact on overall risk factor control.

2008
Green [105] RCT 1 Pharmacist care management delivered through the portal improved BP control in patients with hypertension verses usual care or portal access only.
2008 Greenhalgh [14] Zickmund [16] Qualitative 1 Interest in the portal was linked to dissatisfaction with provider responsiveness, the difficulty obtaining medical information, and logistical problems with the office. Disinterest in the portal was linked to satisfaction with the provider-patient relationship, difficulty in using the portal, and fear of losing relationships and e-mail contact with providers.
2009 Britto [94] Descriptive Usability testing 1 Despite prior heuristic testing, scenario-based testing demonstrated difficulties in navigation, medical language complexity, error recovery, and provider-based organizational interface design.
2009 Chen [17] Descriptive 1 Annual age/sex-adjusted total office-visit rate decreased 26.2% (n=225,000) at Kaiser Permanente Hawaii between 2004 and 2007. Scheduled telephone visits increased more than eightfold, and secure email messaging, nearly six-fold between 2005 and 2007. 2009 Kim [109] Mix-method 1 47% of patients used the portal only on a single day (n=77). Use highly correlated with the availability of in-person assistance; 77% of user activities occurred while the assistance was available. Residents' ability to use the portal was limited by poor computer and Internet skills, low health and computer literacy, and limited physical/cognitive abilities.

2009
Leveille [108] RCT 1 85% of intervention group (n=121) and 80% (n=120) of the control reported discussing their screened condition during their PCP visit. More intervention than control patients reported their PCP gave them specific advice about their health (94% vs. 84%) and referred them to a specialist (51% vs. 28%). Results showed no differences in detection or management of screened conditions, symptom ratings, and quality of life between groups. Mix-method 1 1 1 Patients perceived the portal as neither useful nor easy to use and its functionality aligned poorly with their expectations and selfmanagement practices. Those who used email-style messaging were positive about its benefits, but enthusiasm apart from the three early adopter clinicians was low.

Kahn [24]
Descriptive 1 Those who rated access to their patient portal as important were more likely to be Hispanic and Internet users and less likely to be age 65 and above or individuals whose doctors always ensured their understanding of their health. Marketing limitations, leadership concerns, and limited staff engagement characterized the low-enrollment in some practices, but not the others. These factors, along with other characteristics such as location and patient demographics, should be explored in future research to identify best practices for successful adoption of a patient portal.

Wen [21]
Descriptive 1 Approximately 86% of participants rated access to patient portal as important (n=7674). However, only 9% of them used the Internet for portal tracking. Those who rated electronic access to their portal as important were more likely to be Hispanic and Internet users and less likely to be age 65 and above or individuals whose doctors always ensured their understanding of their health.

Wiljer [110]
Quasiexperimental 1 311 breast cancer patients completed demographic and pre-assessment questionnaires, 250 registered to use the online intervention, and 125 participants completed all required study elements. Participants generally found the portal easy to use; the perceived value of improved participation was not detected in self-efficacy scores. Having access to personal health information did not increase anxiety levels. Overall, 69% of 7,088 patients enrolled in the patient portal. All minority patients were significantly less likely to enroll than whites: 55% blacks, 64% Latinos and 66% Asians compared with 74% whites. Disparities persisted in adjusted analyses, except for Asians. Younger patients were significantly less likely to solicit provider advice or request medication refills than any other age group in unadjusted and adjusted analyses. Similarly, male patients were less likely to solicit provider advice than women in all analyses. Of the 12,050 office appointments examined, portal registrations within 45 days of the appointment were 11.7% for instructional video, 7.1% for paper instructions, and 2.5% for control respectively. Within 6 months following the interventions, 3.5% in the video cohort, 1.2% in the paper, and 0.75% of the control patients demonstrated portal use by initiating portal messages to their providers.

Sequist
[30] RCT 1 1 1 Of 552 patients randomized to receive the intervention, 296 (54%) viewed the message, and 47 (9%) used the Web-based risk assessment tool. Among those who viewed the electronic message, risk tool users were more likely than nonusers to request screening exams and to be screened. Screening rates were higher at 1 month for patients who received electronic messages than for those who did not, but this difference was no longer significant at 4 months.

Shaw [112]
Descriptive 1 Data from this study suggest that a significant portion of patients (29.7%) with diabetes utilize the portal (n=2190). Clinical outcome results indicated that portal use was not a significant predictor of lowdensity lipoprotein and total cholesterol levels. However, portal use was a statistically significant predictor of glycosylated hemoglobin (HbA1c).

2011
Wynia Results from a national survey of physicians in 2008-09 found 64% had never used a patient portal, 42 % interested in trying it (n=865). Rural physicians expressed much more willingness to use such records compared to urban or suburban physicians. Physicians have concerns about patients' privacy, the accuracy of underlying data, their potential liability for tracking all of the information, and the lack of payment to clinicians for using or reviewing these patient records. Computer use among non-adopters was lower than that among portal users and rejecters. Factors identified by the diffusion of innovation model emerged in the factor analysis: ease of use, relative advantage, observe-ability, and trial-ability. Significant positive predictors of the value of the portal for communicating with the doctor's office: relative advantage, ease of use, trial-ability, perceptions of privacy and security, age, and computer use. The key variable explaining patient willingness to adopt a patient portal was the patient's health literacy as measured by the eHealth Literacy Scale (eHEALS). Adoption and use rates may also depend on the availability of office staff for hands-on training as well as assistance with interpretation of medical information. Following demonstration, the 97% of parents surveyed thought the patient portal was easy to use and planned to view medical records and laboratory results (n=171). They disliked having separate accounts for each child and the lack of a ''symptom checker'' and wanted access to the patient portal via on-site kiosks.

2013
Britto [124] Qualitative 1 Consistent access to their child's medical records provided parents with a sense of control and security and reduced anxiety. Access to lab results enabled parents to be proactive when making treatment decisions, which also helped alleviate anxiety. Some parents felt that information obtained through the portal provided reassurance that they were doing well managing their child's illness and making progress.

2013
Butler [58] Descriptive 1 Rogers' Diffusion of Innovations theory was used to frame perceptions of portal use by clinic staff and likely users. Researchers and care teams promoting adoption among clinicians should consider implementing systems compatible with existing systems. When this isn't possible, teams should demonstrate trial-ability by creating specific, easy procedures for communicating and tracking modification requests. Some participants may have been agents for change in the positive, but others were negative about the system. Teams should use "the tendency for groups to self-organize around agents of change" to encourage patient portal champions within the clinic. For themes identified (relevance, trust and functionality) participants indicated that endorsement and use of the portal by their personal clinician was vital. In particular, participants' comments linked the portal use to: (1) integrating the portal into current care, (2) promoting effective patient-clinician encounters and communication and (3)  New documentation of family health history entered via patient portal was significantly higher than the control group after adjustment for differences in socio-demographic characteristics.

Qualitative 1
Healthcare professionals identified SM as the missing element of complex information landscape and its implementation acted as a catalyst for change. SM was found to have important consequences for access, communication, patient self-report, and patient/provider relationships. Users were more likely than nonusers to be Caucasian/white, have higher incomes, and be privately insured. Users reported using the portal to request prescription refills/reauthorizations and to view their medication list, and they were enthusiastic about the idea of added refill reminder functionality. They were also interested in added functionality that could streamline the refill/reauthorization process, alert providers to fill/refill non-adherence, and provide information about medication side effects and interactions. The two most commonly accessed medical records were lab results and provider notes. Of survey respondents, 94% were satisfied with the access to their medical records, 56% said that provider helped to answer their questions, 56% felt that it made communication better with their physicians, 38% found new and useful information, and 88% said that they would continue to use the portal (n=17).

Ronda [51]
Descriptive 1 Among 128 patients with type 1 diabetes, those with a login (89.8%) were younger and more frequently treated by an internist. In 1,262 patients with type 2 diabetes, fewer patients had a log-in (41.0%). The likelihood of having a login was independently associated with younger age, male gender, higher educational level, and treatment by an internist, longer duration of diabetes, and poly-pharmacy.

Sanders
[50] Descriptive 1 Only 12% respondents (n=654) within safety-net practices had no experience using a computer. Age, sex, and race were not associated with interest in a portal. A majority of patients have access to the Internet and are interested in using a portal to manage their care, but they are not prepared.

2013
Sarkar [118] Descriptive 1 Non-adherence among statin users decreased only among patients initiating occasional or exclusive use of the refill function. In adjusted models, non-adherence declined by an absolute 6% among exclusive users, without significant changes among occasional users (n=8,705). Similar LDL decreases were also seen among exclusive users. 1 Participants in both age groups (middle age and older adults) experienced significant difficulties in using the portal to complete routine health management tasks. Older adults, particularly those with lower numeracy and technology experience, encountered greater problems using the system. Cognitive abilities predicting task performance varied according to the complexity of the task.
2013 VanDerVaart Mix-method 1 1 Interviewed multidisciplinary team identified potential advantages and challenges to patient portal use. Most respondents reported that data on diagnosis, medication, and treatment plan and consultations should be released to patients, but opinions differed considerably about more complex data, clinical notes, lab results and radiological images.

2013
WadeVuturo [117] Mix-method 1 Self-reported benefits of SM within a portal included enhanced patient satisfaction, efficiency and quality of face-to-face visits, and access to clinical care outside traditional face-to-face visits. Self-reported barriers to using SM within a portal included preconceived beliefs or rules about SM and prior negative experiences with SM. Participants' assumptions about providers' opinions about SM and providers' instructions about SM also influenced use. Consumers were most positive about features that increased convenience, such as making appointments and refilling prescriptions.
Consumers raised concerns about a number of potential barriers to usage, such as complex language, complex visual layouts, and poor usability features.

Abramson
[67] Descriptive 1 74% of survey respondents reported that they would use a patient portal and wanted a broad array of functionalities available (n=701). Potential portal use was significantly associated with Internet use at least monthly, a belief that portals may improve the security of health information, and a belief that they may improve quality of care.

Aberger [125]
Case report 1 Description of a telehealth system that incorporates home electronic blood pressure monitoring that uploads to a patient portal coupled with a Web-based dashboard that enables clinical pharmacist collaborative care in a renal transplant clinic. Preliminary results show statistically significant reductions in average systolic and diastolic BP of 6.0 mm Hg and 3.0 mm Hg, respectively, at 30 days after enrollment. 170 patients with a serious mental disorder and a comorbid medical condition treated in a community mental health center were randomly assigned to either a patient portal or usual care. In the patient portal group, the total proportion of eligible preventive services received increased from 24% at baseline to 40% at the 12-month follow-up, whereas it declined in the usual care group, from 25% to 18% (n=85). The significant differences in the quality of medical care may be explained by the increase in the number of outpatient medical visits among portal users. Pilot study 1 Describes the development and validation of a profile mechanism (ALGA-C Profiler) that measures and collects psycho-cognitive information about patients. Techniques for exploiting the constructed patient profile via a patient portal are discussed. Predefined rules will use a patient's profile to personalize the contents of the information presented and to customize users tasks.

Lau [131]
Descriptive 1 The portal provided access to diabetes education material, personal lab values and a messaging system allowing communication with staff. Patients who logged in 1 or more times were defined as portal users. Compared to non-users, a higher proportion of users achieved A1C ≤7% at follow up.
2014 Nazi [130] Descriptive 1 33% of surveyed VA patient portal user respondents knew that clinical notes could be viewed, and nearly 23.5% said that they had viewed their notes at least once (n=37,103). The majority of users agreed that accessing their notes will help them to do a better job of taking medications as prescribed (80.1%) and be better prepared for clinic visits (88.6%). 91% of users agreed that use of visit notes would better help them understand their conditions and remember the plan for their care. Users who had either contacted their provider or healthcare team (11.9%) or planned to (13.5%) primarily wanted to learn more about a health issue, medication, or test results (53.7%). At the time of analysis, 11,352 patients were registered patient portal users for 0-42 months (median 17). More than half became persistent users; the median login was 2 times per month. Supporting patients through the first steps of establishing access to their online records is associated with higher rates of long-term use of patient portal and likely would increase use of other electronic health records provided for patients with chronic disease.

Riippa
[70] Descriptive 1 1 No significant effect of access to patient portal on patient activation was detected. Results suggest that the intervention had greatest effect on patients starting at the highest level of patient activation, and among patients diagnosed within a year of the intervention.