An Extraordinary Voice Expressed Through Humor: A Tribute to Casey Quinlan.

The Journal of Participatory Medicine introduces Extraordinary Lives, a new journal section celebrating the voices and work of steadfast advocates of participatory medicine that we have lost. This inaugural essay spotlights Casey Quinlan, a patient activist who effectively used her humor and incisive analysis of health care to encourage others to strive for meaningful change. A first-generation "professional patient," Casey served as a role model who inspired many to share their stories and achieve genuine partnerships in care delivery. A maker of "good trouble," her voice and stance were part of her power and influence in disrupting the status quo. We present her fight for personal access to health data, her aspiration for personally customized evidence, and her drive for all people to control their health and their health care.

Protecting healing relationships in the age of electronic health records: report from an international conference.

We present findings of an international conference of diverse participants exploring the influence of electronic health records (EHRs) on the patient-practitioner relationship. Attendees united around a belief in the primacy of this relationship and the importance of undistracted attention. They explored administrative, regulatory, and financial requirements that have guided United States (US) EHR design and challenged patient-care documentation, usability, user satisfaction, interconnectivity, and data sharing. The United States experience was contrasted with those of other nations, many of which have prioritized patient-care documentation rather than billing requirements and experienced high user satisfaction. Conference participants examined educational methods to teach diverse learners effective patient-centered EHR use, including alternative models of care delivery and documentation, and explored novel ways to involve patients as healthcare partners like health-data uploading, chart co-creation, shared practitioner notes, applications, and telehealth. Future best practices must preserve human relationships, while building an effective patient-practitioner (or team)-EHR triad.

Predictors of viewing progress notes among users of VA's electronic health portal who receive mental health care.

OBJECTIVE: Consistent with the OpenNotes movement, the Veterans Health Administration (VHA) offers patients online access to their clinical notes through the Blue Button feature in its electronic patient health portal, My HealtheVet. We identified demographic, diagnostic, and knowledge-related predictors of viewing clinical notes among veterans receiving VHA mental health care who recently used My HealtheVet. MATERIALS AND METHODS: Three hundred and thirty-eight patients receiving mental health care from 1 VHA medical center who had logged into My HealtheVet in the prior 6 months completed self-report questionnaires assessing their viewing of clinical notes. Additional data were extracted from VHA's Patient Care Database. Multivariable logistic regression was used to examine predictors of viewing notes. RESULTS: Fifty percent of respondents reported having read their notes. In the final multivariable model, post-traumatic stress disorder (PTSD) diagnosis [odds ratio (OR) = 2.30 (1.31-4.07)], speaking with their mental health clinician about their ability to view notes [OR = 3.84 (1.69-8.72)], and being very or extremely confident in understanding the purpose and uses of Blue Button [OR = 9.80 (2.23-43.07) and OR = 13.36 (2.74-65.20), respectively] were associated with viewing notes. DISCUSSION: Patient recall of mental health clinicians speaking to them about their ability to view notes, and confidence in understanding the use and purposes of Blue Button, were stronger predictors of viewing notes than demographic variables. PTSD diagnosis was the only clinical characteristic associated with viewing notes. CONCLUSION: The findings support the value of mental health clinicians openly discussing the availability of notes with patients if they wish to help them take advantage of their potential benefits.

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.

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.

Integrating patient voices into health information for self-care and patient-clinician partnerships: Veterans Affairs design recommendations for patient-generated data applications.

Electronic health record content is created by clinicians and is driven largely by intermittent and brief encounters with patients. Collecting data directly from patients in the form of patient-generated data (PGD) provides an unprecedented opportunity to capture personal, contextual patient information that can supplement clinical data and enhance patients' self-care. The US Department of Veterans Affairs (VA) is striving to implement the enterprise-wide capability to collect and use PGD in order to partner with patients in their care, improve the patient healthcare experience, and promote shared decision making. Through knowledge gained from Veterans' and healthcare teams' perspectives, VA created a taxonomy and an evolving framework on which to design and develop applications that capture and help physicians utilize PGD. Ten recommendations for effectively collecting and integrating PGD into patient care are discussed, addressing health system culture, data value, architecture, policy, data standards, clinical workflow, data visualization, and analytics and population reach.

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).

Health Information Exchange.

OBJECTIVES: This review sought to systematically review the available literature on health information exchange (HIE), the electronic sharing of clinical information across the boundaries of health care organizations. HIE has been promoted as an important application of technology in medicine that can improve the efficiency, cost-effectiveness, quality, and safety of health care delivery. However, HIE also requires considerable investment by sponsors, which have included governments as well as health care organizations. This review aims to synthesize the currently available research addressing HIE effectiveness, use, usability, barriers and facilitators to actual use, implementation, and sustainability, and to present this information as a foundation on which future implementation, expansion, and research can be based. DATA SOURCES: A research librarian designed and conducted searches of electronic databases, including MEDLINE® (1990 to February 2015), PsycINFO® (1990 to February 2015), CINAHL® (1990 through February 2015), the Cochrane Central Register of Controlled Trials (through January 2015), the Cochrane Database of Systematic Reviews (through January 2015), the Database of Abstracts of Reviews of Effects (through the first quarter of 2015), and the National Health Sciences Economic Evaluation Database (through the first quarter of 2015). The searches were supplemented by reviewing reference lists and the table of contents of journals not indexed in the databases we searched. REVIEW METHODS: Two investigators reviewed abstracts and the selected full-text articles for inclusion based on predefined criteria. Discrepancies were resolved through discussion and consensus, with a third investigator making the final decision as needed. Data were abstracted from each included article by one person and verified by another. All analyses were qualitative, and they were customized according to the topic. RESULTS: We included 136 studies overall, with 34 on effectiveness, 26 of which reported intermediate clinical, economic, or patient outcomes, and 8 that reported on clinical perceptions of HIE. We also found 58 studies on the use of HIE, 22 on usability and other facilitators and barriers to actual use of HIE, 45 on facilitators or barriers to HIE implementation, and 17 on factors related to sustainability of HIE.No studies of HIE effectiveness reported impact on primary clinical outcomes (e.g., mortality and morbidity) or identified harms. Low-quality evidence somewhat supports the value of HIE for reducing duplicative laboratory and radiology test ordering, lowering emergency department costs, reducing hospital admissions (less so for readmissions), improving public health reporting, increasing ambulatory quality of care, and improving disability claims processing. In studies of clinician perceptions of HIE, most respondents attributed positive changes to HIE, such as improvements in coordination, communication, and knowledge about the patient. However in one study clinicians reported that the HIE did not save time and may not be worth the cost.Studies of HIE use found that HIE adoption has increased over time, with 76 percent of U.S. hospitals exchanging information in 2014, an 85-percent increase since 2008 and a 23-percent increase since 2013. HIE systems were used by 38 percent of office-based physicians in 2012, while use remains low, less than 1 percent, among long-term care providers.Within organizations with HIE, the number of users or the number of visits in which the HIE was used was generally very low. The degree of usability of an HIE was associated with increased rates of use but was not associated with effectiveness outcomes. The most commonly cited barriers to HIE use were lack of critical mass electronically exchanging data, inefficient workflow, and poorly designed interface and update features. Information was insufficient to allow us to assess usability by HIE function or architecture.Studies provided information on both external environmental and internal organizational characteristics that affect implementation and sustainability. General characteristics of the HIE organization (e.g., strong leadership) or specific characteristics of the HIE system were the most frequently cited facilitators, while disincentives such as competition or lack of a business case for HIE were the most frequently identified barriers. LIMITATIONS: The scope of studies identified was limited compared with the actual uses and capabilities of HIE. The outcomes measured and methods of measurement and analysis, for example, were limited and narrowly defined; the issue of potential confounders was not addressed in most studies of effectiveness, and harms were not adequately studied. There was a high degree of heterogeneity in study designs, outcomes, HIE types, and settings across the studies, limiting the ability to synthesize the evidence; no quantitative analyses were possible. The applicability of this evidence base is uncertain because the HIE systems studied were so diverse, and many in existence have not contributed to research in this field. CONCLUSIONS: The full impact of HIE on clinical outcomes and potential harms is inadequately studied, although evidence provides some support for benefit in reducing use of some specific resources and achieving improvements in quality-of-care measures. Use of HIE has risen over time, and is highest in hospitals and lowest in long-term care settings. However, use of HIE within organizations that offer it is still low. Barriers to HIE use include lack of critical mass participating in the exchange, inefficient workflow, and poorly designed interface and update features. Studies have identified numerous facilitators and barriers to implementation and sustainability, but the studies have not ranked or compared their impact. To advance our understanding of HIE, future studies need to address comprehensive questions, use more rigorous designs, use a standard for describing types of HIE, and be part of a coordinated systematic approach to studying HIE.

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.

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.

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.

Transfer of information from personal health records: a survey of veterans using My HealtheVet.

OBJECTIVE: Personal health records provide patients with ownership of their health information and allow them to share information with multiple healthcare providers. However, the usefulness of these records relies on patients understanding and using their records appropriately. My HealtheVet is a Web-based patient portal containing a personal health record administered by the Veterans Health Administration. The goal of this study was to explore veterans' interest and use of My HealtheVet to transfer and share information as well as to identify opportunities to increase veteran use of the My HealtheVet functions. MATERIALS AND METHODS: Two waves of data were collected in 2010 through an American Customer Satisfaction Index Web-based survey. A random sample of veterans using My HealtheVet was invited to participate in the survey conducted on the My HealtheVet portal through a Web-based pop-up browser window. RESULTS: Wave One results (n=25,898) found that 41% of veterans reported printing information, 21% reported saving information electronically, and only 4% ever sent information from My HealtheVet to another person. In Wave Two (n=18,471), 30% reported self-entering medication information, with 18% sharing this information with their Veterans Affairs (VA) provider and 9.6% sharing with their non-VA provider. CONCLUSION: Although veterans are transferring important medical information from their personal health records, increased education and awareness are needed to increase use. Personal health records have the potential to improve continuity of care. However, more research is needed on both the barriers to adoption as well as the actual impact on patient health outcomes and well-being.

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 respondent's 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.

Promise of and potential for patient-facing technologies to enable meaningful use.

Patients are using healthcare technologies for a variety of reasons. Recently, the Meaningful-Use rule was released by the Centers for Medicare and Medicaid Services, providing some initial guidance for patient-facing technologies. There needs to be more of an understanding of patients' needs and how these technologies can be utilized effectively. This article provides a framework for organizing patient-facing technologies into categories of meaningful use, and how these technologies can improve healthcare quality, safety, and population health. Barriers to achieving meaningful use of HIT and unintended consequences of patient-facing technologies are discussed. The success of healthcare reform is predicated on achieving improved health outcomes and reduced costs, which can be accomplished only by activating patients to become more engaged in their own care. Patient-facing technologies are likely to play a critical role in supporting patients to become more informed and activated and may also improve efficiencies. Further research is needed to identify the most useful and effective technologies for patients.

MyHealtheVet PHR: a description of users and patient portal use.

The My HealtheVet Personal Health Record (PHR) continues to demonstrate significant growth, with more than 630,000 registered users logging more than 20 million visits to the site. Understanding patient user characteristics, use of and satisfaction with current features, and desires for new online services reveals important user perceptions that will further inform PHR development.

Using the six sigma process to implement the Centers for Disease Control and Prevention Guideline for Hand Hygiene in 4 intensive care units.

BACKGROUND: The Centers for Disease Control and Prevention (CDC) Guideline for Hand Hygiene in Health Care Settings was issued in 2002. In 2003, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) established complying with the CDC Guideline as a National Patient Safety Goal for 2004. This goal has been maintained through 2006. The CDC's emphasis on the use of alcohol-based hand rubs (ABHRs) rather than soap and water was an opportunity to improve compliance, but the Guideline contained over 40 specific recommendations to implement. OBJECTIVE: To use the Six Sigma process to examine hand hygiene practices and increase compliance with the CDC hand hygiene recommendations required by JCAHO. DESIGN: Six Sigma Project with pre-post design. PARTICIPANTS: Physicians, nurses, and other staff working in 4 intensive care units at 3 hospitals. MEASUREMENTS: Observed compliance with 10 required hand hygiene practices, mass of ABHR used per month per 100 patient-days, and staff attitudes and perceptions regarding hand hygiene reported by questionnaire. RESULTS: Observed compliance increased from 47% to 80%, based on over 4,000 total observations. The mass of ABHR used per 100 patient-days in 3 intensive care units (ICUs) increased by 97%, 94%, and 70%; increases were sustained for 9 months. Self-reported compliance using the questionnaire did not change. Staff reported increased use of ABHR and increased satisfaction with hand hygiene practices and products. CONCLUSIONS: The Six Sigma process was effective for organizing the knowledge, opinions, and actions of a group of professionals to implement the CDC's evidence-based hand hygiene practices in 4 ICUs. Several tools were developed for widespread use.