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.     

The Impact of Electronic Patient Portals on Patient Care: A Systematic Review of Controlled Trials

Background

Modern information technology is changing and provides new challenges to health care. The emergence of the Internet and the electronic health record (EHR) has brought new opportunities for patients to play a more active role in his/her care. Although in many countries patients have the right to access their clinical information, access to clinical records electronically is not common. Patient portals consist of provider-tethered applications that allow patients to electronically access health information that are documented and managed by a health care institution. Although patient portals are already being implemented, it is still unclear in which ways these technologies can influence patient care.

Objective

To systematically review the available evidence on the impact of electronic patient portals on patient care.

Methods

A systematic search was conducted using PubMed and other sources to identify controlled experimental or quasi-experimental studies on the impact of patient portals that were published between 1990 and 2011. A total of 1,306 references from all the publication hits were screened, and 13 papers were retrieved for full text analysis.

Results

We identified 5 papers presenting 4 distinct studies. There were no statistically significant changes between intervention and control group in the 2 randomized controlled trials investigating the effect of patient portals on health outcomes. Significant changes in the patient portal group, compared to a control group, could be observed for the following parameters: quicker decrease in office visit rates and slower increase in telephone contacts; increase in number of messages sent; changes of the medication regimen; and better adherence to treatment.

Conclusions

The number of available controlled studies with regard to patient portals is low. Even when patient portals are often discussed as a way to empower patients and improve quality of care, there is insufficient evidence to support this assumption.     

Patient and Provider Attitudes Toward the Use of Patient Portals for the Management of Chronic Disease: A Systematic Review

Background

Patient portals provide patients with the tools to better manage and understand their health status. However, widespread adoption of patient portals faces resistance from patients and providers for a number of reasons, and there is limited evidence evaluating the characteristics of patient portals that received positive remarks from patients and providers.

Objective

The objectives of this systematic review are to identify the shared characteristics of portals that receive favorable responses from patients and providers and to identify the elements that patients and providers believe need improvement.

Methods

The authors conducted a systematic search of the CINAHL and PubMed databases to gather data about the use of patient portals in the management of chronic disease. Two reviewers analyzed the articles collected in the search process in order remove irrelevant articles. The authors selected 27 articles to use in the literature review.

Results

Results of this systematic review conclude that patient portals show significant improvements in patient self-management of chronic disease and improve the quality of care provided by providers. The most prevalent positive attribute was patient-provider communication, which appeared in 10 of 27 articles (37%). This was noted by both patients and providers. The most prevalent negative perceptions are security (concerns) and user-friendliness, both of which occurred in 11 of 27 articles (41%). The user-friendliness quality was a concern for patients and providers who are not familiar with advanced technology and therefore find it difficult to navigate the patient portal. The high cost of installation and maintenance of a portal system, not surprisingly, deters some providers from implementing such technology into their practice, but this was only mentioned in 3 of the 27 articles (11%). It is possible that the incentives for meaningful use assuage the barrier of cost.

Conclusions

This systematic review revealed mixed attitudes from patients and their providers regarding the use of patient portals to manage their chronic disease. The authors suggest that a standard patient portal design providing patients with the resources to understand and manage their chronic conditions will promote the adoption of patient portals in health care organizations.     

Characteristics of Patient Portals Developed in the Context of Health Information Exchanges: Early Policy Effects of Incentives in the Meaningful Use Program in the United States

Background

In 2014, the Centers for Medicare & Medicaid Services in the United States launched the second stage of its Electronic Health Record (EHR) Incentive Program, providing financial incentives to providers to meaningfully use their electronic health records to engage patients online. Patient portals are electronic means to engage patients by enabling secure access to personal medical records, communication with providers, various self-management tools, and administrative functionalities. Outcomes of patient portals have mainly been reported in large integrated health systems. This may now change as the EHR Incentive Program enables and supports the use of patient portals in other types of health systems. In this paper, we focus on Health Information Exchanges (HIE): entities that facilitate data exchange within networks of independent providers.

Objective

In response to the EHR Incentive Program, some Health Information Exchanges in the United States are developing patient portals and offering them to their network of providers. Such patient portals hold high value for patients, especially in fragmented health system contexts, due to the portals’ ability to integrate health information from an array of providers and give patients one access point to this information. Our aim was to report on the early effects of the EHR incentives on patient portal development by HIEs. Specifically, we describe the characteristics of these portals, identify factors affecting adoption by providers during the 2013-2014 time frame, and consider what may be the primary drivers of providers’ adoption of patient portals in the future.

Methods

We identified four HIEs that were developing patient portals as of spring 2014. We collected relevant documents and conducted interviews with six HIE leaders as well as two providers that were implementing the portals in their practices. We performed content analysis on these data to extract information pertinent to our study objectives.

Results

Our findings suggest that there are two primary types of patient portals available to providers in HIEs: (1) portals linked to EHRs of individual providers or health systems and (2) HIE-sponsored portals that link information from multiple providers’ EHRs. The decision of providers in the HIEs to adopt either one of these portals appears to be a trade-off between functionality, connectivity, and cost. Our findings also suggest that while the EHR Incentive Program is influencing these decisions, it may not be enough to drive adoption. Rather, patient demand for access to patient portals will be necessary to achieve widespread portal adoption and realization of potential benefits.

Conclusions

Optimizing patient value should be the main principle underlying policies intending to increase online patient engagement in the third stage of the EHR Incentive Program. We propose a number of features for the EHR Incentive Program that will enhance patient value and thereby support the growth and sustainability of patient portals provided by Health Information Exchanges.     

The Wired Patient: Patterns of Electronic Patient Portal Use Among Patients With Cardiac Disease or Diabetes

Background

As providers develop an electronic health record–based infrastructure, patients are increasingly using Web portals to access their health information and participate electronically in the health care process. Little is known about how such portals are actually used.

Objective

In this paper, our goal was to describe the types and patterns of portal users in an integrated delivery system.

Methods

We analyzed 12 months of data from Web server log files on 2282 patients using a Web-based portal to their electronic health record (EHR). We obtained data for patients with cardiovascular disease and/or diabetes who had a Geisinger Clinic primary care provider and were registered “MyGeisinger” Web portal users. Hierarchical cluster analysis was applied to longitudinal data to profile users based on their frequency, intensity, and consistency of use. User types were characterized by basic demographic data from the EHR.

Results

We identified eight distinct portal user groups. The two largest groups (41.98%, 948/2258 and 24.84%, 561/2258) logged into the portal infrequently but had markedly different levels of engagement with their medical record. Other distinct groups were characterized by tracking biometric measures (10.54%, 238/2258), sending electronic messages to their provider (9.25%, 209/2258), preparing for an office visit (5.98%, 135/2258), and tracking laboratory results (4.16%, 94/2258).

Conclusions

There are naturally occurring groups of EHR Web portal users within a population of adult primary care patients with chronic conditions. More than half of the patient cohort exhibited distinct patterns of portal use linked to key features. These patterns of portal access and interaction provide insight into opportunities for electronic patient engagement strategies.     

The Effects of Web-Based Patient Access to Laboratory Results in British Columbia: A Patient Survey on Comprehension and Anxiety

Background

Web-based patient access to personal health information is limited but increasing in Canada and internationally.

Objective

This exploratory study aimed to increase understanding of how Web-based access to laboratory test results in British Columbia (Canada), which has been broadly available since 2010, affects patients’ experiences.

Methods

In November 2013, we surveyed adults in British Columbia who had had a laboratory test in the previous 12 months. Using a retrospective cohort design, we compared reported wait-time for results, test result comprehension, and anxiety levels of “service users” who had Web-based access to their test results (n=2047) with those of a general population panel that did not have Web-based access (n=1245).

Results

The vast majority of service users (83.99%, 95% CI 82.31-85.67) said they received their results within “a few days”, compared to just over a third of the comparison group (37.84%, 95% CI 34.96-40.73). Most in both groups said they understood their test results, but the rate was lower for service users than the comparison group (75.55%, 95% CI 73.58-77.49 vs 84.69%, 95% CI 82.59-86.81). There was no significant difference between groups in levels of reported anxiety after receiving test results.

Conclusions

While most patients who received their laboratory test results online reported little anxiety after receiving their results and were satisfied with the service, there may be opportunities to improve comprehension of results.     

Impact of mHealth Chronic Disease Management on Treatment Adherence and Patient Outcomes: A Systematic Review

Background

Adherence to chronic disease management is critical to achieving improved health outcomes, quality of life, and cost-effective health care. As the burden of chronic diseases continues to grow globally, so does the impact of non-adherence. Mobile technologies are increasingly being used in health care and public health practice (mHealth) for patient communication, monitoring, and education, and to facilitate adherence to chronic diseases management.

Objective

We conducted a systematic review of the literature to evaluate the effectiveness of mHealth in supporting the adherence of patients to chronic diseases management (“mAdherence”), and the usability, feasibility, and acceptability of mAdherence tools and platforms in chronic disease management among patients and health care providers.

Methods

We searched PubMed, Embase, and EBSCO databases for studies that assessed the role of mAdherence in chronic disease management of diabetes mellitus, cardiovascular disease, and chronic lung diseases from 1980 through May 2014. Outcomes of interest included effect of mHealth on patient adherence to chronic diseases management, disease-specific clinical outcomes after intervention, and the usability, feasibility, and acceptability of mAdherence tools and platforms in chronic disease management among target end-users.

Results

In all, 107 articles met all inclusion criteria. Short message service was the most commonly used mAdherence tool in 40.2% (43/107) of studies. Usability, feasibility, and acceptability or patient preferences for mAdherence interventions were assessed in 57.9% (62/107) of studies and found to be generally high. A total of 27 studies employed randomized controlled trial (RCT) methods to assess impact on adherence behaviors, and significant improvements were observed in 15 of those studies (56%). Of the 41 RCTs that measured effects on disease-specific clinical outcomes, significant improvements between groups were reported in 16 studies (39%).

Conclusions

There is potential for mHealth tools to better facilitate adherence to chronic disease management, but the evidence supporting its current effectiveness is mixed. Further research should focus on understanding and improving how mHealth tools can overcome specific barriers to adherence.     

Spanish-Language Consumer Health Information Technology Interventions: A Systematic Review

BackgroundAs consumer health information technology (IT) becomes more thoroughly integrated into patient care, it is critical that these tools are appropriate for the diverse patient populations whom they are intended to serve. Cultural differences associated with ethnicity are one aspect of diversity that may play a role in user-technology interactions.ObjectiveOur aim was to evaluate the current scope of consumer health IT interventions targeted to the US Spanish-speaking Latino population and to characterize these interventions in terms of technological attributes, health domains, cultural tailoring, and evaluation metrics.MethodsA narrative synthesis was conducted of existing Spanish-language consumer health IT interventions indexed within health and computer science databases. Database searches were limited to English-language articles published between January 1990 and September 2015. Studies were included if they detailed an assessment of a patient-centered electronic technology intervention targeting health within the US Spanish-speaking Latino population. Included studies were required to have a majority Latino population sample. The following were extracted from articles: first author’s last name, publication year, population characteristics, journal domain, health domain, technology platform and functionality, available languages of intervention, US region, cultural tailoring, intervention delivery location, study design, and evaluation metrics.ResultsWe included 42 studies in the review. Most of the studies were published between 2009 and 2015 and had a majority percentage of female study participants. The mean age of participants ranged from 15 to 68. Interventions most commonly focused on urban population centers and within the western region of the United States. Of articles specifying a technology domain, computer was found to be most common; however, a fairly even distribution across all technologies was noted. Cancer, diabetes, and child, infant, or maternal health were the most common health domains targeted by consumer health IT interventions. More than half of the interventions were culturally tailored. The most frequently used evaluation metric was behavior/attitude change, followed by usability and knowledge retention.ConclusionsThis study characterizes the existing body of research exploring consumer health IT interventions for the US Spanish-speaking Latino population. In doing so, it reveals three primary needs within the field. First, while the increase in studies targeting the Latino population in the last decade is a promising advancement, future research is needed that focuses on Latino subpopulations previously overlooked. Second, preliminary steps have been taken to culturally tailor consumer health IT interventions for the US Spanish-speaking Latino population; however, focus must expand beyond intervention content. Finally, the field should work to promote long-term evaluation of technology efficacy, moving beyond intermediary measures toward measures of health outcomes.     

Features of Computer-Based Decision Aids: Systematic Review,Thematic Synthesis,and Meta-Analyses

BackgroundPatient information and education, such as decision aids, are gradually moving toward online, computer-based environments. Considerable research has been conducted to guide content and presentation of decision aids. However, given the relatively new shift to computer-based support, little attention has been given to how multimedia and interactivity can improve upon paper-based decision aids.ObjectiveThe first objective of this review was to summarize published literature into a proposed classification of features that have been integrated into computer-based decision aids. Building on this classification, the second objective was to assess whether integration of specific features was associated with higher-quality decision making.MethodsRelevant studies were located by searching MEDLINE, Embase, CINAHL, and CENTRAL databases. The review identified studies that evaluated computer-based decision aids for adults faced with preference-sensitive medical decisions and reported quality of decision-making outcomes. A thematic synthesis was conducted to develop the classification of features. Subsequently, meta-analyses were conducted based on standardized mean differences (SMD) from randomized controlled trials (RCTs) that reported knowledge or decisional conflict. Further subgroup analyses compared pooled SMDs for decision aids that incorporated a specific feature to other computer-based decision aids that did not incorporate the feature, to assess whether specific features improved quality of decision making.ResultsOf 3541 unique publications, 58 studies met the target criteria and were included in the thematic synthesis. The synthesis identified six features: content control, tailoring, patient narratives, explicit values clarification, feedback, and social support. A subset of 26 RCTs from the thematic synthesis was used to conduct the meta-analyses. As expected, computer-based decision aids performed better than usual care or alternative aids; however, some features performed better than others. Integration of content control improved quality of decision making (SMD 0.59 vs 0.23 for knowledge; SMD 0.39 vs 0.29 for decisional conflict). In contrast, tailoring reduced quality of decision making (SMD 0.40 vs 0.71 for knowledge; SMD 0.25 vs 0.52 for decisional conflict). Similarly, patient narratives also reduced quality of decision making (SMD 0.43 vs 0.65 for knowledge; SMD 0.17 vs 0.46 for decisional conflict). Results were varied for different types of explicit values clarification, feedback, and social support.ConclusionsIntegration of media rich or interactive features into computer-based decision aids can improve quality of preference-sensitive decision making. However, this is an emerging field with limited evidence to guide use. The systematic review and thematic synthesis identified features that have been integrated into available computer-based decision aids, in an effort to facilitate reporting of these features and to promote integration of such features into decision aids. The meta-analyses and associated subgroup analyses provide preliminary evidence to support integration of specific features into future decision aids. Further research can focus on clarifying independent contributions of specific features through experimental designs and refining the designs of features to improve effectiveness.     

Electronic Symptom Reporting Between Patient and Provider for Improved Health Care Service Quality: A Systematic Review of Randomized Controlled Trials. Part 2: Methodological Quality and Effects

Background

We conducted in two parts a systematic review of randomized controlled trials (RCTs) on electronic symptom reporting between patients and providers to improve health care service quality. Part 1 reviewed the typology of patient groups, health service innovations, and research targets. Four innovation categories were identified: consultation support, monitoring with clinician support, self-management with clinician support, and therapy.

Objective

To assess the methodological quality of the RCTs, and summarize effects and benefits from the methodologically best studies.

Methods

We searched Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore for original studies presented in English-language articles between 1990 and November 2011. Risk of bias and feasibility were judged according to the Cochrane recommendation, and theoretical evidence and preclinical testing were evaluated according to the Framework for Design and Evaluation of Complex Interventions to Improve Health. Three authors assessed the risk of bias and two authors extracted the effect data independently. Disagreement regarding bias assessment, extraction, and interpretation of results were resolved by consensus discussions.

Results

Of 642 records identified, we included 32 articles representing 29 studies. No articles fulfilled all quality requirements. All interventions were feasible to implement in a real-life setting, and theoretical evidence was provided for almost all studies. However, preclinical testing was reported in only a third of the articles. We judged three-quarters of the articles to have low risk for random sequence allocation and approximately half of the articles to have low risk for the following biases: allocation concealment, incomplete outcome data, and selective reporting. Slightly more than one fifth of the articles were judged as low risk for blinding of outcome assessment. Only 1 article had low risk of bias for blinding of participants and personnel. We excluded 12 articles showing high risk or unclear risk for both selective reporting and blinding of outcome assessment from the effect assessment. The authors’ hypothesis was confirmed for 13 (65%) of the 20 remaining articles. Articles on self-management support were of higher quality, allowing us to assess effects in a larger proportion of studies. All except one self-management interventions were equally effective to or better than the control option. The self-management articles document substantial benefits for patients, and partly also for health professionals and the health care system.

Conclusion

Electronic symptom reporting between patients and providers is an exciting area of development for health services. However, the research generally is of low quality. The field would benefit from increased focus on methods for conducting and reporting RCTs. It appears particularly important to improve blinding of outcome assessment and to precisely define primary outcomes to avoid selective reporting. Supporting self-management seems to be especially promising, but consultation support also shows encouraging results.     

Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

Background

Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries.

Objective

This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis.

Methods

Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system.

Results

ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback was encouraging and positive, with most patients reporting that they found ePOCS easy to use and that, if asked, they would continue using the system long-term (86.2%, 361/419). ePOCS was not administratively burdensome to run day-to-day, and patient-initiated inquiries averaged just 11 inquiries per month.

Conclusions

The informatics underlying the ePOCS system demonstrated successful proof-of-concept – the system successfully linked PROs with registry data for 100% of the patients. The majority of patients were keen to engage. Participation rates are likely to improve as the Internet becomes more universally adopted. ePOCS can help overcome the challenges of routinely collecting PROs and linking with clinical data, which is integral for treatment and supportive care planning and for targeting service provision.     

Ability to Generate Patient Registries Among Practices With and Without Electronic Health Records

Background

The ability to generate registries of patients with particular clinical attributes, such as diagnoses or medications taken, is central to measuring and improving the quality of health care. However, it is not known how many providers have the ability to generate such registries.

Objectives

To assess the proportion of physician practices that can construct registries of patients with specific diagnoses, laboratory results, or medications, and to determine the relationship between electronic health record (EHR) usage and the ability to perform registry functions.

Methods

We conducted a mail survey of a stratified random sample of physician practices in Massachusetts in the northeastern United States (N = 1884). The survey included questions about the physicians’ ability to generate diagnosis, laboratory result, and medication registries; the presence of EHR; and usage of specific EHR features.

Results

The response rate was 71% (1345/1884). Overall, 79.8% of physician practices reported being able to generate registries of patients by diagnosis; 56.1% by laboratory result; and 55.8% by medication usage. In logistic regression analyses, adjusting for urban/rural location, practice size and ownership, teaching status, hospital affiliation, and specialty, physician practices with an EHR were more likely to be able to construct diagnosis registries (adjusted odds ratio [OR] 1.53, 95% confidence interval [CI] 1.25 - 1.86), laboratory registries (OR 1.42, 95% CI 1.22 - 1.66), and medication registries (OR 2.30, 95% CI 1.96 - 2.70).

Conclusions

Many physician practices were able to generate registries, but this capability is far from universal. Adoption of EHRs appears to be a useful step toward this end, and practices with EHRs are considerably more likely to be able to carry out registry functions. Because practices need registries to perform broad-based quality improvement, they should consider adopting EHRs that have built-in registry functionality.     

Electronic Symptom Reporting Between Patient and Provider for Improved Health Care Service Quality: A Systematic Review of Randomized Controlled Trials. Part 1: State of the Art

Background

Over the last two decades, the number of studies on electronic symptom reporting has increased greatly. However, the field is very heterogeneous: the choices of patient groups, health service innovations, and research targets seem to involve a broad range of foci. To move the field forward, it is necessary to build on work that has been done and direct further research to the areas holding most promise. Therefore, we conducted a comprehensive review of randomized controlled trials (RCTs) focusing on electronic communication between patient and provider to improve health care service quality, presented in two parts. Part 2 investigates the methodological quality and effects of the RCTs, and demonstrates some promising benefits of electronic symptom reporting.

Objective

To give a comprehensive overview of the most mature part of this emerging field regarding (1) patient groups, (2) health service innovations, and (3) research targets relevant to electronic symptom reporting.

Methods

We searched Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore for original studies presented in English-language articles published from 1990 to November 2011. Inclusion criteria were RCTs of interventions where patients or parents reported health information electronically to the health care system for health care purposes and were given feedback.

Results

Of 642 records identified, we included 32 articles representing 29 studies. The included articles were published from 2002, with 24 published during the last 5 years. The following five patient groups were represented: respiratory and lung diseases (12 studies), cancer (6), psychiatry (6), cardiovascular (3), and diabetes (1). In addition to these, 1 study had a mix of three groups. All included studies, except 1, focused on long-term conditions. We identified four categories of health service innovations: consultation support (7 studies), monitoring with clinician support (12), self-management with clinician support (9), and therapy (1). Most of the research (21/29, 72%) was conducted within four combinations: consultation support innovation in the cancer group (5/29, 17%), monitoring innovation in the respiratory and lung diseases group (8/29, 28%), and self-management innovations in psychiatry (4/29, 14%) and in the respiratory and lung diseases group (4/29, 14%). Research targets in the consultation support studies focused on increased patient centeredness, while monitoring and self-management mainly aimed at documenting health benefits. All except 1 study aiming for reduced health care costs were in the monitoring group.

Conclusion

RCT-based research on electronic symptom reporting has developed enormously since 2002. Research including additional patient groups or new combinations of patient groups with the four identified health service innovations can be expected in the near future. We suggest that developing a generic model (not diagnosis specific) for electronic patient symptom reporting for long-term conditions may benefit the field.     

Positive Psychological Constructs and Health Outcomes in Hematopoietic Stem Cell Transplantation Patients: A Systematic Review

Positive psychological constructs (eg, optimism, positive affect) have been independently associated with superior health outcomes across many medical populations. However, there has been little synthesis of the literature examining these associations among patients with hematologic malignancies receiving hematopoietic stem cell transplantation (HSCT). To address this gap we completed a systematic review, using Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, of studies examining relationships between positive psychological constructs and health-related outcomes (eg, psychiatric symptoms, function, health-related quality of life [HRQoL], or treatment compliance) after HSCT. Eighteen eligible studies (N?=?4201; 47% women; mean age, 47.1) were identified. Optimism (n?=?12 studies) was the most frequently studied positive construct and HRQoL (examined in n?=?11 studies) the most common outcome. All 17 studies with quantitative analyses found a significant (P < .05) association between a positive psychological construct and a health outcome; most but not all controlled for 1 or more relevant covariates. Among patients with hematologic malignancies who receive HSCT, positive psychological constructs appear to be associated with improved HRQoL and other health outcomes. Further work is warranted to more comprehensively understand the independent effects of positive psychological constructs on a variety of health outcomes and to develop interventions to promote well-being that are adapted to the needs of this population.     

The Impact of Internet Health Information on Patient Compliance: A Research Model and an Empirical Study

Background

Patients have been increasingly seeking and using Internet health information to become more active in managing their own health in a partnership with their physicians. This trend has both positive and negative effects on the interactions between patients and their physicians. Therefore, it is important to understand the impact that the increasing use of Internet health information has on the patient-physician relationship and patients’ compliance with their treatment regimens.

Objective

This study examines the impact of patients’ use of Internet health information on various elements that characterize the interactions between a patient and her/his physician through a theoretical model based on principal-agent theory and the information asymmetry perspective.

Methods

A survey-based study consisting of 225 participants was used to validate a model through various statistical techniques. A full assessment of the measurement model and structural model was completed in addition to relevant post hoc analyses.

Results

This research revealed that both patient-physician concordance and perceived information asymmetry have significant effects on patient compliance, with patient-physician concordance exhibiting a considerably stronger relationship. Additionally, both physician quality and Internet health information quality have significant effects on patient-physician concordance, with physician quality exhibiting a much stronger relationship. Finally, only physician quality was found to have a significant impact on perceived information asymmetry, whereas Internet health information quality had no impact on perceived information asymmetry.

Conclusions

Overall, this study found that physicians can relax regarding their fears concerning patient use of Internet health information because physician quality has the greatest impact on patients and their physician coming to an agreement on their medical situation and recommended treatment regimen as well as patient’s compliance with their physician’s advice when compared to the impact that Internet health information quality has on these same variables. The findings also indicate that agreement between the patient and physician on the medical situation and treatment is much more important to compliance than the perceived information gap between the patient and physician (ie, the physician having a higher level of information in comparison to the patient). In addition, the level of agreement between a patient and their physician regarding the medical situation is more reliant on the perceived quality of their physician than on the perceived quality of Internet health information used. This research found that only the perceived quality of the physician has a significant relationship with the perceived information gap between the patient and their physician and the quality of the Internet health information has no relationship with this perceived information gap.     

Social Media and Rating Sites as Tools to Understanding Quality of Care: A Scoping Review

Background

Insight into the quality of health care is important for any stakeholder including patients, professionals, and governments. In light of a patient-centered approach, it is essential to assess the quality of health care from a patient’s perspective, which is commonly done with surveys or focus groups. Unfortunately, these “traditional” methods have significant limitations that include social desirability bias, a time lag between experience and measurement, and difficulty reaching large groups of people. Information on social media could be of value to overcoming these limitations, since these new media are easy to use and are used by the majority of the population. Furthermore, an increasing number of people share health care experiences online or rate the quality of their health care provider on physician rating sites. The question is whether this information is relevant to determining or predicting the quality of health care.

Objective

The goal of our research was to systematically analyze the relation between information shared on social media and quality of care.

Methods

We performed a scoping review with the following goals: (1) to map the literature on the association between social media and quality of care, (2) to identify different mechanisms of this relationship, and (3) to determine a more detailed agenda for this relatively new research area. A recognized scoping review methodology was used. We developed a search strategy based on four themes: social media, patient experience, quality, and health care. Four online scientific databases were searched, articles were screened, and data extracted. Results related to the research question were described and categorized according to type of social media. Furthermore, national and international stakeholders were consulted throughout the study, to discuss and interpret results.

Results

Twenty-nine articles were included, of which 21 were concerned with health care rating sites. Several studies indicate a relationship between information on social media and quality of health care. However, some drawbacks exist, especially regarding the use of rating sites. For example, since rating is anonymous, rating values are not risk adjusted and therefore vulnerable to fraud. Also, ratings are often based on only a few reviews and are predominantly positive. Furthermore, people providing feedback on health care via social media are presumably not always representative for the patient population.

Conclusions

Social media and particularly rating sites are an interesting new source of information about quality of care from the patient’s perspective. This new source should be used to complement traditional methods, since measuring quality of care via social media has other, but not less serious, limitations. Future research should explore whether social media are suitable in practice for patients, health insurers, and governments to help them judge the quality performance of professionals and organizations.     

Low Health Literacy and Evaluation of Online Health Information: A Systematic Review of the Literature

Background

Recent years have witnessed a dramatic increase in consumer online health information seeking. The quality of online health information, however, remains questionable. The issue of information evaluation has become a hot topic, leading to the development of guidelines and checklists to design high-quality online health information. However, little attention has been devoted to how consumers, in particular people with low health literacy, evaluate online health information.

Objective

The main aim of this study was to review existing evidence on the association between low health literacy and (1) people’s ability to evaluate online health information, (2) perceived quality of online health information, (3) trust in online health information, and (4) use of evaluation criteria for online health information.

Methods

Five academic databases (MEDLINE, PsycINFO, Web of Science, CINAHL, and Communication and Mass-media Complete) were systematically searched. We included peer-reviewed publications investigating differences in the evaluation of online information between people with different health literacy levels.

Results

After abstract and full-text screening, 38 articles were included in the review. Only four studies investigated the specific role of low health literacy in the evaluation of online health information. The other studies examined the association between educational level or other skills-based proxies for health literacy, such as general literacy, and outcomes. Results indicate that low health literacy (and related skills) are negatively related to the ability to evaluate online health information and trust in online health information. Evidence on the association with perceived quality of online health information and use of evaluation criteria is inconclusive.

Conclusions

The findings indicate that low health literacy (and related skills) play a role in the evaluation of online health information. This topic is therefore worth more scholarly attention. Based on the results of this review, future research in this field should (1) specifically focus on health literacy, (2) devote more attention to the identification of the different criteria people use to evaluate online health information, (3) develop shared definitions and measures for the most commonly used outcomes in the field of evaluation of online health information, and (4) assess the relationship between the different evaluative dimensions and the role played by health literacy in shaping their interplay.