Susan Woods

Patient Experiences With Full Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot: Qualitative Study

Background Full sharing of the electronic health record with patients has been identified as an important opportunity to engage patients in their health and health care. The My HealtheVet Pilot, the initial personal health record of the US Department of Veterans Affairs, allowed patients and their delegates to view and download content in their electronic health record, including clinical notes, laboratory tests, and imaging reports. Objective A qualitative study with purposeful sampling sought to examine patients’ views and experiences with reading their health records, including their clinical notes, online. Methods Five focus group sessions were conducted with patients and family members who enrolled in the My HealtheVet Pilot at the Portland Veterans Administration Medical Center, Oregon. A total of 30 patients enrolled in the My HealtheVet Pilot, and 6 family members who had accessed and viewed their electronic health records participated in the sessions. Results Four themes characterized patient experiences with reading the full complement of their health information. Patients felt that seeing their records positively affected communication with providers and the health system, enhanced knowledge of their health and improved self-care, and allowed for greater participation in the quality of their care such as follow-up of abnormal test results or decision-making on when to seek care. While some patients felt that seeing previously undisclosed information, derogatory language, or inconsistencies in their notes caused challenges, they overwhelmingly felt that having more, rather than less, of their health record information provided benefits. Conclusions Patients and their delegates had predominantly positive experiences with health record transparency and the open sharing of notes and test results. Viewing their records appears to empower patients and enhance their contributions to care, calling into question common provider concerns about the effect of full record access on patient well-being. While shared records may or may not impact overall clinic workload, it is likely to change providers’ work, necessitating new types of skills to communicate and partner with patients.

Patient interest in sharing personal health record information: a web-based survey.

BACKGROUND Electronic personal health record (PHR) systems are proliferating but largely have not realized their potential for enhancing communication among patients and their network of care providers. OBJECTIVE To explore preferences about sharing electronic health information among users of the U.S. Department of Veterans Affairs (VA) PHR system, My HealtheVet. DESIGN Web-based survey of a convenience sample. SETTING My HealtheVet Web site from 7 July through 4 October 2010. PARTICIPANTS 18 471 users of My HealtheVet. MEASUREMENTS Interest in shared PHR access and preferences about who would receive access, the information that would be shared, and the activities that users would delegate. RESULTS Survey respondents were predominantly men (92%) and aged 50 to 64 years (51%) or 65 years or older (39%); approximately 39% reported poor or fair health status. Almost 4 of 5 respondents (79%) were interested in sharing access to their PHR with someone outside of their health system (62% with a spouse or partner, 23% with a child, 15% with another family member, and 25% with a non-VA health care provider). Among those who selected a family member other than a spouse or partner, 47% lived apart from the specified person. Preferences about degree of access varied on the basis of the type of information being shared, the type of activity being performed, and the respondents relationship with the selected person. LIMITATIONS The survey completion rate was 40.8%. Results might not be generalizable to all My HealtheVet users. CONCLUSION In a large survey of PHR users in the VA system, most respondents were interested in sharing access to their electronic health information with caregivers and non-VA providers. Existing and evolving PHR systems should explore secure mechanisms for shared PHR access to improve information exchange among patients and the multiple persons involved in their health care. PRIMARY FUNDING SOURCE Veterans Health Administration and The Robert Wood Johnson Foundation Clinical Scholars Program.

Evaluating patient access to Electronic Health Records: results from a survey of veterans.

Objective: Personal Health Records (PHRs) tethered to an Electronic Health Record (EHR) offer patients unprecedented access to their personal health information. At the Department of Veteran Affairs (VA), the My HealtheVet Pilot Program was an early PHR prototype enabling patients to import 18 types of information, including clinical notes and laboratory test results, from the VA EHR into a secure PHR portal. The goal of this study was to explore Veteran perceptions about this access to their medical records, including perceived value and effect on satisfaction, self-care, and communication. Methods: Patients enrolled in the pilot program were invited to participate in a web-based survey. Results: Among 688 Veteran respondents, there was a high degree of satisfaction with the pilot program, with 84% agreeing that the information and services were helpful. The most highly ranked feature was access to personal health information from the VA EHR. The majority of respondents (72%) indicated that the pilot Web site made it easy for them to locate relevant information. Most participants (66%) agreed that the pilot program helped improve their care, with 90% indicating that they would recommend it to another Veteran. Conclusions: Veterans’ primary motivation for use of the pilot Web site was the ability to access their own personal health information from the EHR. With patients viewing such access as beneficial to their health and care, PHRs with access to EHR data are positioned to improve health care quality. Making additional information accessible to patients is crucial to meet their needs and preferences.

VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes

OBJECTIVE To explore the experience of early patient adopters who accessed their clinical notes online using the Blue Button feature of the My HealtheVet portal. METHODS A web-based survey of VA patient portal users from June 22 to September 15, 2013. RESULTS 33.5% of respondents knew that clinical notes could be viewed, and nearly one in four (23.5%) said that they had viewed their notes at least once. The majority of VA Notes 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%). Nine out of 10 users agreed that use of visit notes will help them understand their conditions better (91.8%), and better remember the plan for their care (91.9%). In contrast, 87% disagreed that VA Notes will make them worry more, and 88.4% disagreed that access to VA Notes will be more confusing than helpful. 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%). CONCLUSIONS Initial assessment of the patient experience within the first 9 months of availability provides evidence that patients both value and benefit from online access to clinical notes. These findings are congruent with OpenNotes study findings on a broader scale. Additional outreach and education is needed to enhance patient awareness. Healthcare professionals should author notes keeping in mind the opportunity patient access presents for enhanced communication.

Outcomes From Health Information Exchange: Systematic Review and Future Research Needs

Background Health information exchange (HIE), the electronic sharing of clinical information across the boundaries of health care organizations, has been promoted to improve the efficiency, cost-effectiveness, quality, and safety of health care delivery. Objective To systematically review the available research on HIE outcomes and analyze future research needs. Methods Data sources included citations from selected databases from January 1990 to February 2015. We included English-language studies of HIE in clinical or public health settings in any country. Data were extracted using dual review with adjudication of disagreements. Results We identified 34 studies on outcomes of HIE. No studies reported on clinical outcomes (eg, mortality and morbidity) or identified harms. Low-quality evidence generally finds that HIE reduces duplicative laboratory and radiology testing, emergency department costs, hospital admissions (less so for readmissions), and improves public health reporting, ambulatory quality of care, and disability claims processing. Most clinicians attributed positive changes in care coordination, communication, and knowledge about patients to HIE. Conclusions Although the evidence supports benefits of HIE in reducing the use of specific resources and improving the quality of care, the full impact of HIE on clinical outcomes and potential harms are inadequately studied. Future studies must address comprehensive questions, use more rigorous designs, and employ a standard for describing types of HIE. Trial Registration PROSPERO Registry No CRD42014013285; http://www.crd.york.ac.uk/PROSPERO/ display_record.asp?ID=CRD42014013285 (Archived by WebCite at http://www.webcitation.org/6dZhqDM8t).

Barriers and facilitators to exchanging health information: a systematic review.

OBJECTIVES We conducted a systematic review of studies assessing facilitators and barriers to use of health information exchange (HIE). METHODS We searched MEDLINE, PsycINFO, CINAHL, and the Cochrane Library databases between January 1990 and February 2015 using terms related to HIE. English-language studies that identified barriers and facilitators of actual HIE were included. Data on study design, risk of bias, setting, geographic location, characteristics of the HIE, perceived barriers and facilitators to use were extracted and confirmed. RESULTS Ten cross-sectional, seven multiple-site case studies, and two before-after studies that included data from several sources (surveys, interviews, focus groups, and observations of users) evaluated perceived barriers and facilitators to HIE use. The most commonly cited barriers to HIE use were incomplete information, inefficient workflow, and reports that the exchanged information that did not meet the needs of users. The review identified several facilitators to use. DISCUSSION Incomplete patient information was consistently mentioned in the studies conducted in the US but not mentioned in the few studies conducted outside of the US that take a collective approach toward healthcare. Individual patients and practices in the US may exercise the right to participate (or not) in HIE which effects the completeness of patient information available to be exchanged. Workflow structure and user roles are key but understudied. CONCLUSIONS We identified several facilitators in the studies that showed promise in promoting electronic health data exchange: obtaining more complete patient information; thoughtful workflow that folds in HIE; and inclusion of users early in implementation.

Consumer Health Informatics: Engaging and Empowering Patients and Families

Technological advances, coupled with a shift toward patient-centered care and unprecedented consumer access to information, have created a new era of consumer engagement, empowerment, and activation. This transformation has striking implications and opportunities for clinical informaticians, including the emergence and evolution of the interdisciplinary field of Consumer Health Informatics. In this chapter, we explore the fundamentals based on a sociotechnical perspective, major drivers, factors which influence consumer adoption and use, and key elements and strategies associated with implementation. We provide an overview of evidence in the literature and methods for assessing impact, and conclude with a discussion of emerging trends.

The Association of Patient Factors, Digital Access, and Online Behavior on Sustained Patient Portal Use: A Prospective Cohort of Enrolled Users

Background As electronic health records and computerized workflows expand, there are unprecedented opportunities to digitally connect with patients using secure portals. To realize the value of patient portals, initial reach across populations will need to be demonstrated, as well as sustained usage over time. Objective The study aim was to identify patient factors associated with short-term and long-term portal usage after patients registered to access all portal functions. Methods We prospectively followed a cohort of patients at a large Department of Veterans Affairs (VA) health care facility who recently completed identity proofing to use the VA patient portal. Information collected at baseline encompassed patient factors potentially associated with portal usage, including: demographics, Internet access and use, health literacy, patient activation, and self-reported health conditions. The primary outcome was the frequency of portal log-ins during 6-month and 18-month time intervals after study enrollment. Results A total of 270 study participants were followed prospectively. Almost all participants (260/268, 97.0%) reported going online, typically at home (248/268, 92.5%). At 6 months, 84.1% (227/270) of participants had visited the portal, with some variation in usage across demographic and health-related subgroups. There were no significant differences in portal log-ins by age, gender, education, marital status, race/ethnicity, distance to a VA facility, or patient activation measure. Significantly higher portal usage was seen among participants using high-speed broadband at home, greater self-reported ability using the Internet, and routinely going online. By 18 months, 91% participants had logged in to the portal, and no significant associations were found between usage and demographics, health status, or patient activation. When examining portal activity between 6 and 18 months, patients who were infrequent or high portal users remained in those categories, respectively. Conclusions Short-term and long-term portal usage was associated with having broadband at home, high self-rated ability when using the Internet, and overall online behavior. Digital inclusion, or ready access to the Internet and digital skills, appears to be a social determinant in patient exposure to portal services.

Health Information Exchange Use (1990-2015): A Systematic Review

Background: In June 2014, the Office of the National Coordinator for Health Information Technology published a 10-year roadmap for the United States to achieve interoperability of electronic health records (EHR) by 2024. A key component of this strategy is the promotion of nationwide health information exchange (HIE). The 2009 Health Information Technology for Economic and Clinical Health (HITECH) Act provided significant investments to achieve HIE. Objective: We conducted a systematic literature review to describe the use of HIE through 2015. Methods: We searched MEDLINE, PsycINFO, CINAHL, and Cochrane databases (1990 – 2015); reference lists; and tables of contents of journals not indexed in the databases searched. We extracted data describing study design, setting, geographic location, characteristics of HIE implementation, analysis, follow-up, and results. Study quality was dual-rated using pre-specified criteria and discrepancies resolved through consensus. Results: We identified 58 studies describing either level of use or primary uses of HIE. These were a mix of surveys, retrospective database analyses, descriptions of audit logs, and focus groups. Settings ranged from community-wide to multinational. Results suggest that HIE use has risen substantially over time, with 82% of non-federal hospitals exchanging information (2015), 38% of physician practices (2013), and 17-23% of long-term care facilities (2013). Statewide efforts, originally funded by HITECH, varied widely, with a small number of states providing the bulk of the data. Characteristics of greater use include the presence of an EHR, larger practice size, and larger market share of the health-system. Conclusions: Use of HIE in the United States is growing but is still limited. Opportunities remain for expansion. Characteristics of successful implementations may provide a path forward.

An analysis of patient-provider secure messaging at two Veterans Health Administration medical centers: message content and resolution through secure messaging

Objective We sought to understand how patients and primary care teams use secure messaging (SM) to communicate with one another by analyzing secure message threads from 2 Department of Veterans Affairs facilities. Methods We coded 1000 threads of SM communication sampled from 40 primary care teams. Results Most threads (94.5%) were initiated by patients (90.4%) or caregivers (4.1%); only 5.5% were initiated by primary care team members proactively reaching out to patients. Medication renewals and refills (47.2%), scheduling requests (17.6%), medication issues (12.9%), and health issues (12.7%) were the most common patient-initiated requests, followed by referrals (7.0%), administrative issues (6.5%), test results (5.4%), test issues (5.2%), informing messages (4.9%), comments about the patient portal or SM (4.1%), appreciation (3.9%), self-reported data (2.8%), life issues (1.5%), and complaints (1.5%). Very few messages were clinically urgent (0.7%) or contained other potentially challenging content. Message threads were mostly short (2.7 messages), comprising an average of 1.35 discrete content types. A substantial proportion of issues (24.2%) did not show any evidence of being resolved through SM. Time to response and extent of resolution via SM varied by message content. Proactive SM use by teams varied, but was most often for test results (32.7%), medication-related issues (21.8%), medication renewals (16.4%), or scheduling issues (18.2%). Conclusions The majority of messages were transactional and initiated by patients or caregivers. Not all content categories were fully addressed over SM. Further education and training for both patients and clinical teams could improve the quality and efficiency of SM communication.