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 Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers

Background

A critical problem for patients with chronic conditions who see multiple health care providers is incomplete or inaccurate information, which can contribute to lack of care coordination, low quality of care, and medical errors.

Objective

As part of a larger project on applications of consumer health information technology (HIT) and barriers to its use, we conducted a semistructured interview study with patients with multiple chronic conditions (MCC) with the objective of exploring their role in managing their personal health information.

Methods

Semistructured interviews were conducted with patients and providers. Patients were eligible if they had multiple chronic conditions and were in regular care with one of two medical organizations in New York City; health care providers were eligible if they had experience caring for patients with multiple chronic conditions. Analysis was conducted from a grounded theory perspective, and recruitment was concluded when saturation was achieved.

Results

A total of 22 patients and 7 providers were interviewed; patients had an average of 3.5 (SD 1.5) chronic conditions and reported having regular relationships with an average of 5 providers. Four major themes arose: (1) Responsibility for managing medical information: some patients perceived information management and sharing as the responsibility of health care providers; others—particularly those who had had bad experiences in the past—took primary responsibility for information sharing; (2) What information should be shared: although privacy concerns did influence some patients’ perceptions of sharing of medical data, decisions about what to share were also heavily influenced by their understanding of health and disease and by the degree to which they understood the health care system; (3) Methods and tools varied: those patients who did take an active role in managing their records used a variety of electronic tools, paper tools, and memory; and (4) Information management as invisible work: managing transfers of medical information to solve problems was a tremendous amount of work that was largely unrecognized by the medical establishment.

Conclusions

We conclude that personal health information management should be recognized as an additional burden that MCC places upon patients. Effective structural solutions for information sharing, whether institutional ones such as care management or technological ones such as electronic health information exchange, are likely not only to improve the quality of information shared but reduce the burden on patients already weighed down by MCC.     

Personal Electronic Health Records: Understanding User Requirements and Needs in Chronic Cancer Care

Background

The integration of new information and communication technologies (ICTs) is becoming increasingly important in reorganizing health care. Adapting ICTs as supportive tools to users'' needs and daily practices is vital for adoption and use.

Objective

In order to develop a Web-based personal electronic health record (PEPA), we explored user requirements and needs with regard to desired information and functions.

Methods

A qualitative study across health care sectors and health professions was conducted in a regional health care setting in Germany. Overall, 10 semistructured focus groups were performed, collecting views of 3 prospective user groups: patients with colorectal cancer (n=12) and representatives from patient support groups (n=2), physicians (n=17), and non-medical HCPs (n=16). Data were audio- and videotaped, transcribed verbatim, and thematically analyzed using qualitative content analysis.

Results

For both patients and HCPs, it was central to have a tool representing the chronology of illness and its care processes, for example, patients wanted to track their long-term laboratory findings (eg, tumor markers). Designing health information in a patient accessible way was highlighted as important. Users wanted to have general and tumor-specific health information available in a PEPA. Functions such as filtering information and adding information by patients (eg, on their well-being or electronic communication with HCPs via email) were discussed.

Conclusions

In order to develop a patient/user centered tool that is tailored to user needs, it is essential to address their perspectives. A challenge for implementation will be how to design PEPA’s health data in a patient accessible way. Adequate patient support and technical advice for users have to be addressed.     

Personal Health Record Use in the United States: Forecasting Future Adoption Levels

BackgroundPersonal health records (PHRs) offer a tremendous opportunity to generate consumer support in pursing the triple aim of reducing costs, increasing access, and improving care quality. Moreover, surveys in the United States indicate that consumers want Web-based access to their medical records. However, concerns that consumers’ low health information literacy levels and physicians’ resistance to sharing notes will limit PHRs’ utility to a relatively small portion of the population have reduced both the product innovation and policy imperatives.ObjectiveThe purpose of our study was 3-fold: first, to report on US consumers’ current level of PHR activity; second, to describe the roles of imitation and innovation influence factors in determining PHR adoption rates; and third, to forecast future PHR diffusion uptake among US consumers under 3 scenarios.MethodsWe used secondary data from the Health Information National Trends Survey (HINTS) of US citizens for the survey years 2008, 2011, and 2013. Applying technology diffusion theory and Bass modeling, we evaluated 3 future PHR adoption scenarios by varying the introduction dates.ResultsAll models displayed the characteristic diffusion S-curve indicating that the PHR technology is likely to achieve significant market penetration ahead of meaningful use goals. The best-performing model indicates that PHR adoption will exceed 75% by 2020. Therefore, the meaningful use program targets for PHR adoption are below the rates likely to occur without an intervention.ConclusionsThe promise of improved care quality and cost savings through better consumer engagement prompted the US Institute of Medicine to call for universal PHR adoption in 1999. The PHR products available as of 2014 are likely to meet and exceed meaningful use stage 3 targets before 2020 without any incentive. Therefore, more ambitious uptake and functionality availability should be incorporated into future goals.     

Barriers and Facilitators to Online Portal Use Among Patients and Caregivers in a Safety Net Health Care System: A Qualitative Study

Background

Patient portals have the potential to support self-management for chronic diseases and improve health outcomes. With the rapid rise in adoption of patient portals spurred by meaningful use incentives among safety net health systems (a health system or hospital providing a significant level of care to low-income, uninsured, and vulnerable populations), it is important to understand the readiness and willingness of patients and caregivers in safety net settings to access their personal health records online.

Objective

To explore patient and caregiver perspectives on online patient portal use before its implementation at San Francisco General Hospital, a safety net hospital.

Methods

We conducted 16 in-depth interviews with chronic disease patients and caregivers who expressed interest in using the Internet to manage their health. Discussions focused on health care experiences, technology use, and interest in using an online portal to manage health tasks. We used open coding to categorize all the barriers and facilitators to portal use, followed by a second round of coding that compared the categories to previously published findings. In secondary analyses, we also examined specific barriers among 2 subgroups: those with limited health literacy and caregivers.

Results

We interviewed 11 patients and 5 caregivers. Patients were predominantly male (82%, 9/11) and African American (45%, 5/11). All patients had been diagnosed with diabetes and the majority had limited health literacy (73%, 8/11). The majority of caregivers were female (80%, 4/5), African American (60%, 3/5), caregivers of individuals with diabetes (60%, 3/5), and had adequate health literacy (60%, 3/5). A total of 88% (14/16) of participants reported interest in using the portal after viewing a prototype. Major perceived barriers included security concerns, lack of technical skills/interest, and preference for in-person communication. Facilitators to portal use included convenience, health monitoring, and improvements in patient-provider communication. Participants with limited health literacy discussed more fundamental barriers to portal use, including challenges with reading and typing, personal experience with online security breaches/viruses, and distrust of potential security measures. Caregivers expressed high interest in portal use to support their roles in interpreting health information, advocating for quality care, and managing health behaviors and medical care.

Conclusions

Despite concerns about security, difficulty understanding medical information, and satisfaction with current communication processes, respondents generally expressed enthusiasm about portal use. Our findings suggest a strong need for training and support to assist vulnerable patients with portal registration and use, particularly those with limited health literacy. Efforts to encourage portal use among vulnerable patients should directly address health literacy and security/privacy issues and support access for caregivers.     

Patient Perceptions of a Personal Health Record: A Test of the Diffusion of Innovation Model

Background

Personal health records (PHRs) have emerged as an important tool with which patients can electronically communicate with their doctors and doctor’s offices. However, there is a lack of theoretical and empirical research on how patients perceive the PHR and the differences in perceptions between users and non-users of the PHR.

Objective

To apply a theoretical model, the diffusion of innovation model, to the study of PHRs and conduct an exploratory empirical study on the applicability of the model to the study of perceptions of PHRs. A secondary objective was to assess whether perceptions of PHRs predict the perceived value of the PHR for communicating with the doctor’s office.

Methods

We first developed a survey capturing perceptions of PHR use and other factors such as sociodemographic characteristics, access and use of technology, perceived innovativeness in the domain of information technology, and perceptions of privacy and security. We then conducted a cross-sectional survey (N = 1500). Patients were grouped into five groups of 300: PHR users (innovators, other users, and laggards), rejecters, and non-adopters. We applied univariate statistical analysis (Pearson chi-square and one-way ANOVA) to assess differences among groups and used multivariate statistical techniques (factor analysis and multiple regression analysis) to assess the presence of factors identified by the diffusion of innovation model and the predictors of our dependent variable (value of PHR for communicating with the doctor’s office).

Results

Of the 1500 surveys, 760 surveys were returned for an overall response rate of 51%. Computer use among non-adopters (75%) was lower than that among PHR users (99%) and rejecters (92%) (P < .001). Non-adopters also reported a lower score on personal innovativeness in information technology (mean = 2.8) compared to 3.6 and 3.1, respectively, for users and rejecters (P < .001). Four factors identified by the diffusion of innovation model emerged in the factor analysis: ease of use, relative advantage, observability, and trialability. PHR users perceived greater ease of use and relative advantage of the PHR than rejecters and non-adopters (P<.001). Multiple regression analysis showed the following factors as significant positive predictors of the value of PHR for communicating with the doctor’s office: relative advantage, ease of use, trialability, perceptions of privacy and security, age, and computer use.

Conclusion

Our study found that the diffusion of innovation model fits the study of perceptions of the PHR and provides a suitable theoretical and empirical framework to identify the factors that distinguish PHR users from non-users. The ease of use and relative advantage offered by the PHR emerged as the most important domains among perceptions of PHR use and in predicting the value of the PHR. Efforts to improve uptake and use of PHRs should focus on strategies that enhance the ease of use of PHRs and that highlight the relative advantages of PHRs.     

Public Health in an Era of Personal Health Records: Opportunities for Innovation and New Partnerships

In the near future, citizens will be able to control and manage their own health information through electronic personal health record systems and tools. The clinical benefits of this innovation, such as cost savings, error reduction, and improved communication, have been discussed in the literature and public forums, as have issues related to privacy and confidentiality. Receiving little attention are the benefits these will have for public health. The benefits and potential for innovation are broad and speak directly to core public health functions such as health monitoring, outbreak management, empowerment, linking to services, and research. Coupled with this is a new relationship with citizens as key partners in protecting and promoting the public’s health.     

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.     

Reasons and Barriers for Using a Patient Portal: Survey Among Patients With Diabetes Mellitus

Background

The use of a Web portal for patients with diabetes mellitus to access their own personal health record may result in improved diabetes outcomes. However, the adoption by patients is slow. This may be caused by patient characteristics, but also by the content, layout, and promotion of the portal. Detailed knowledge about this could help increase patients’ participation in Web portals.

Objective

The aim was to study the opinions of patients with diabetes and identify perceived barriers to using a Web portal to optimize its use.

Methods

We conducted a survey among patients with type 1 and type 2 diabetes mellitus from 62 primary care practices and 1 outpatient hospital clinic in the central area of the Netherlands who all used the same electronic health record with a Web portal. Questionnaires about patient characteristics, opinions about reasons for use or nonuse, and about portal content were sent to 1500 patients with a login and 3000 patients without a login to the Web portal. Patient groups were stratified according to login frequency. Demographic and diabetes-related variables were analyzed with multivariable regression analysis.

Results

The total response rate was 66.63% (2391/4399); 1390 of 4399 patients (31.60%) were eligible for analysis. There were 413 regular users (login frequency more than once) and 758 nonusers (no login). Most nonusers (72.4%) stated that the main reason for not requesting a login was that they were unaware of the existence of the portal. Other barriers reported by patients were disinterest in managing their own disease (28.5%, 216/758) and feelings of inadequacy with the use of computers and Internet (11.6%, 88/758). Patients treated by a general practitioner were more frequently nonusers compared to patients treated by an internist (78.8%, 666/846 vs 28.3%, 92/325; P<.001) and more users than nonusers became aware of the Web portal through their physician (94.9%, 392/413 vs 48.8%, 102/209; P<.001). Nonusers perceived specific portal content as not as useful as regular users did, especially access to laboratory values (71.7%, 383/534 vs 92.3%, 372/403), rereading clinic visits (61.3%, 320/522 vs 89.6%, 360/402), e-messaging (52.0%, 262/504 vs 74.6%, 299/401), and uploading results to the glucose diary (45.3%, 229/506 vs 74.0%, 288/400; all P<.001).

Conclusions

Our study shows that unawareness of the patient portal is the main barrier of enrollment. Users and nonusers perceive the usefulness of the portal differently and do not have the same recommendations for additional functionalities. To increase patients’ participation in a Web portal, the unawareness of its existence and its possibilities need to be addressed by their health care professionals.     

Impact of Patient Access to Internet Health Records on Glaucoma Medication: Randomized Controlled Trial

Background

Glaucoma is one of the leading causes of blindness. Reduction of intraocular pressure is the only proven way to prevent progression of glaucomatous optic neuropathy. The majority of glaucoma patients need to use antiglaucoma ophthalmic solutions over the course of their life. Thus, good adherence and persistency of glaucoma treatment are important factors for better glaucoma care.

Objective

The purpose of this study was to investigate the impact of an Internet-based glaucoma care support system on glaucoma medication use.

Methods

Patients were randomly divided into two groups. The non–Internet access (NIA) group consisted of patients who had access to the Internet-based glaucoma care support system during the 4-year period only when they were examined by ophthalmologists. The Internet access (IA) group consisted of patients who had the same Internet-based glaucoma care support system access as the NIA group for the first 2 years following enrollment but who were also given free access to the glaucoma care support system for the remaining 2 years. Changes in glaucoma medication use were investigated.

Results

In total, 81 patients in the IA group and 90 patients in the NIA group satisfied the study protocol. The number of antiglaucoma ophthalmic solutions used during the study period significantly increased in the NIA group (P<.03) but not in the IA group. The percentages of patients with unchanged, increased, and decreased antiglaucoma ophthalmic solution use during the study period were 61.1% (55/90), 17.8% (16/90), and 3.3% (3/90), respectively, in the NIA group, and 56.8% (46/81), 8.6% (7/81), and 13.6% (11/81), respectively, in the IA group (P<.001). Internet access significantly shifted from an increasing intraocular pressure trend to a decreasing trend in the IA group (P=.002) among the patients who did not have any medication changes.

Conclusions

Allowing patients to browse their medical data may reduce the use and improve the effectiveness of glaucoma medication.

Trial Registration

UMIN-CTR Clinical Trial Number: UMIN000006982; https://upload.umin.ac.jp/cgi-open-bin/ctr/ctr.cgi?function=brows&action=brows&type=summary&recptno=R000008238&language=E (Archived by WebCite at http://www.webcitation.org/6MRPQeEAv).     

基于HL7标准的居民健康档案研究

目的随着医疗信息化的不断深入,医院内以及区域医疗信息共享已成为全球医疗卫生信息化的发展趋势。为临床医学科研提供更为准确和高效的信息检索与分析功能,是居民健康档案未来的发展方向。方法本文基于HL7（Health Level7）标准及可扩展标记语言（extensible markup language,XML）技术,在介绍居民健康档案功能和特点基础上,分析了健康档案的数据模型设计和实现方案,包括数据存储模式、XML存储方式选型、数据库选型等。结果通过运用XML技术和HL7标准的数据转换,可实现医院内部多个系统的无缝集成。结论在实际应用中,基于HL7标准的居民健康档案可以较好地保证数字化医疗信息的完整性、一致性,实现医疗信息共享。     

The Impact of an Incentive on the Use of an Online Self-Directed Wellness and Self-Management Program

Background

Those who pay for health care are increasingly looking for strategies to influence individuals to take a more active role in managing their health. Incenting health plan members and/or employees to participate in wellness programs is a widely used approach.

Objective

In this study, we examine financial incentives to health plan members to participate in an online self-management/wellness program—US $20 for completing the patient activation measure (PAM) and an additional US $40 for completing 8 learning modules. We examined whether the characteristics of plan members differed by the degree to which they responded to the incentives. Further, we examined whether participation in the wellness program was associated with improvements in PAM scores and changes in health care utilization.

Methods

This retrospective study compared demographic characteristics and change in PAM scores and health utilization for 144,625 health plan members in 2011. Four groups were compared: (1) those who were offered the incentives but chose not to participate (n=128,634), (2) those who received the initial incentive (PAM only) but did not complete 8 topics (n=7099), (3) those who received both incentives (completing 8 topics but no more) (n=2693), and (4) those who received both incentives and continued using the online program beyond what was required by the incentives (n=6249).

Results

The vast majority of health plan members did not participate in the program (88.91%, 128,634/144,675). Of those who participated, only 7099 of 16,041 (44.25%) completed the PAM for the first incentive, 2693 (16.79%) completed 8 topics for the second incentive, and 6249 (38.96%) received both incentives and continued using the program beyond the incentive requirements. Nonparticipants were more likely to be men and to have lower health risk scores on average than the other three groups of participants (P<.001). In multivariate regression models, those who used the online program (8 topics or beyond) increased their PAM score by approximately 1 point more than those who only took the PAM and did not use the wellness program (P<.03). In addition, emergency department visits were lower for all groups who responded to any level of the incentive as compared to those who did not (P<.01). No differences were found in other types of utilization.

Conclusions

The incentive was not sufficient to spark most health plan members to use the wellness program. However, the fact that many program participants went beyond the incentive in their use of the online wellness program suggests that the users of the online program found value in using it, and it was their own internal motivation that stimulated this additional use. Providing an incentive for program participation may be an effective pathway for working with less activated patients, particularly if the program is tailored to the needs of the less activated.     

Online Prediction of Health Care Utilization in the Next Six Months Based on Electronic Health Record Information: A Cohort and Validation Study

Background

The increasing rate of health care expenditures in the United States has placed a significant burden on the nation’s economy. Predicting future health care utilization of patients can provide useful information to better understand and manage overall health care deliveries and clinical resource allocation.

Objective

This study developed an electronic medical record (EMR)-based online risk model predictive of resource utilization for patients in Maine in the next 6 months across all payers, all diseases, and all demographic groups.

Methods

In the HealthInfoNet, Maine’s health information exchange (HIE), a retrospective cohort of 1,273,114 patients was constructed with the preceding 12-month EMR. Each patient’s next 6-month (between January 1, 2013 and June 30, 2013) health care resource utilization was retrospectively scored ranging from 0 to 100 and a decision tree–based predictive model was developed. Our model was later integrated in the Maine HIE population exploration system to allow a prospective validation analysis of 1,358,153 patients by forecasting their next 6-month risk of resource utilization between July 1, 2013 and December 31, 2013.

Results

Prospectively predicted risks, on either an individual level or a population (per 1000 patients) level, were consistent with the next 6-month resource utilization distributions and the clinical patterns at the population level. Results demonstrated the strong correlation between its care resource utilization and our risk scores, supporting the effectiveness of our model. With the online population risk monitoring enterprise dashboards, the effectiveness of the predictive algorithm has been validated by clinicians and caregivers in the State of Maine.

Conclusions

The model and associated online applications were designed for tracking the evolving nature of total population risk, in a longitudinal manner, for health care resource utilization. It will enable more effective care management strategies driving improved patient outcomes.     

Systems Medicine 2.0: Potential Benefits of Combining Electronic Health Care Records With Systems Science Models

BackgroundThe global burden of disease is increasingly dominated by non-communicable diseases.These diseases are less amenable to curative and preventative interventions than communicable disease. This presents a challenge to medical practice and medical research, both of which are experiencing diminishing returns from increasing investment.ObjectiveOur aim was to (1) review how medical knowledge is generated, and its limitations, (2) assess the potential for emerging technologies and ideas to improve medical research, and (3) suggest solutions and recommendations to increase medical research efficiency on non-communicable diseases.MethodsWe undertook an unsystematic review of peer-reviewed literature and technology websites.ResultsOur review generated the following conclusions and recommendations. (1) Medical knowledge continues to be generated in a reductionist paradigm. This oversimplifies our models of disease, rendering them ineffective to sufficiently understand the complex nature of non-communicable diseases. (2) Some of these failings may be overcome by adopting a “Systems Medicine” paradigm, where the human body is modeled as a complex adaptive system. That is, a system with multiple components and levels interacting in complex ways, wherein disease emerges from slow changes to the system set-up. Pursuing systems medicine research will require larger datasets. (3) Increased data sharing between researchers, patients, and clinicians could provide this unmet need for data. The recent emergence of electronic health care records (EHR) could potentially facilitate this in real-time and at a global level. (4) Efforts should continue to aggregate anonymous EHR data into large interoperable data silos and release this to researchers. However, international collaboration, data linkage, and obtaining additional information from patients will remain challenging. (5) Efforts should also continue towards “Medicine 2.0”. Patients should be given access to their personal EHR data. Subsequently, online communities can give researchers the opportunity to ask patients for direct access to the patient’s EHR data and request additional study-specific information. However, selection bias towards patients who use Web 2.0 technology may be difficult to overcome.ConclusionsSystems medicine, when combined with large-scale data sharing, has the potential to raise our understanding of non-communicable diseases, foster personalized medicine, and make substantial progress towards halting, curing, and preventing non-communicable diseases. Large-scale data amalgamation remains a core challenge and needs to be supported. A synthesis of “Medicine 2.0” and “Systems Science” concepts into “Systems Medicine 2.0” could take decades to materialize but holds much promise.