Learning Library

Our Learning Library is intended as a virtual resource center where professionals can go for a broad range of information relating to interoperability, information-sharing and the six domains in which NIC primarily works: human services, education, public health, public safety, health information technology and emergency services. We have vetted and aggregated numerous studies, guidance documents and other materials, which can be sorted in a variety of ways for easy access and use – and we will add resources continually over time. The Learning Library is available to all professionals interested in the subject matter.

To make the Learning Library as robust and beneficial as possible, we welcome recommendations of relevant content that users encounter elsewhere, that they have produced themselves or that they are already utilizing. Please fill out and submit the form below to provide your suggestions and comments, or send an email to info@stewardsofchange.org.

02-11-2019 Report

National Drug Control Strategy: A Report by the Office of National Drug Control Policy

Jim Carroll, the newly sworn-in Director of the White House Office of National Drug Control Policy (ONDCP), released the Administration’s National Drug Control Strategy January 31, 2019, which establishes the President’s priorities for addressing the challenge of drug trafficking and use.

“Our number one goal is to save American lives, and this comprehensive plan reaffirms President Trump’s commitment to addressing the opioid crisis aggressively and in partnership with our partners across the nation. We must be relentless in our efforts to tackle the scourge of addiction that has affected so many families and communities across the United States. The Strategy builds upon our current whole-of-government approach that educates Americans about the dangers of drug abuse, ensures those struggling with addiction get the help they need, and stops the flow of illegal drugs across our borders,” ONDCP Director Jim Carroll said.

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02-11-2019 Agenda

Facilitating out-of-home caregiving through health information technology: survey of informal caregivers’ current practices, interests, and perceived barriers

BACKGROUND: Many patients with chronic conditions are supported by out-of-home informal caregivers-family members, friends, and other individuals who provide care and support without pay-who, if armed with effective consumer health information technology, could inexpensively facilitate their care. OBJECTIVE: We sought to understand caregivers’ use of, interest in, and perceived barriers to health information technology for out-of-home caregiving. METHODS: We conducted 2 sequential Webbased surveys with a national sample of individuals who provide out-of-home caregiving to an adult family member or friend with a chronic illness. We queried respondents about their use of health information technology for out-of-home caregiving and used multivariable regression to investigate caregiver and care-recipient characteristics associated with caregivers’ technology use for caregiving. RESULTS: Among 316 out-of-home caregiver respondents, 34.5% (109/316) reported using health information technology for caregiving activities. The likelihood of a caregiver using technology increased significantly with intensity of caregiving (as measured by number of out-ofhome caregiving activities). Compared with very low intensity caregivers, the adjusted odds ratio (OR) of technology use was 1.88 (95% CI 1.01-3.50) for low intensity caregivers, 2.39 (95% CI 1.11-5.15) for moderate intensity caregivers, and 3.70 (95% CI 1.62-8.45) for high intensity caregivers. Over 70% (149/207) of technology nonusers reported interest in using technology in the future to support caregiving. The most commonly cited barriers to technology use for caregiving were health system privacy rules that restrict access to care-recipients’ health information and lack of familiarity with programs or websites that facilitate out-of-home caregiving. CONCLUSIONS: Health information technology use for out-of-home caregiving is common, especially among individuals who provide more intense caregiving. Health care systems can address the mismatch between caregivers’ interest in and use of technology by modifying privacy policies that impede information exchange.

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02-11-2019 Article

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.

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02-11-2019 Article

An Environmental Scan of Shared Access to the Patient Portal

We sought to understand the comprehensiveness of consumer-oriented information describing the availability of shared access to adult patient portals from publicly reported information on institutional websites of 20 large and geographically diverse health systems. All 20 health systems reported that they offer patients the ability to share access to their patient portal account with a family member or friend; however, the comprehensiveness of information regarding registration procedures, features, and terminology varied widely. Half of the systems (n = 10) reported having shared access available on their patient portal registration webpage. Few systems (n = 2) reported affording patients the ability to differentiate specific role-based privileges. No systems reported uptake of shared access among adult patients, which was variably described as “proxy,” “caregiver,” “parental,” or “delegate” access. Findings suggest that engaging families through health information technology will require greater efforts to promote awareness and differentiate ges that respect patients’ choice and control in information-sharing preferences.

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02-11-2019 Article

Patients, care partners, and shared access to the patient portal: online practices at an integrated health system.

OBJECTIVE: To describe the characteristics and online practices of patients and “care partners” who share explicit access to a patient portal account at a large integrated health system that implemented shared access functionality in 2003. MATERIALS AND METHODS: Survey of 323 patients and 389 care partners at Geisinger Health System with linked information regarding access and use of patient portal functionality. RESULTS: Few (0.4%) registered adult patient portal users shared access to their account. Patients varied in age (range: 18-102); more than half had a high school education or less (53.6%). Patient motivations for sharing access included: to help manage care (41.9%), for emergency reasons (29.7%), lack of technology experience (18.4%), or care partner request (10.0%). Care partners were parents (39.8%), adult children (27.9%), spouses (26.2%), and other relatives (6.1%). Patients were more likely than care partners to have inadequate health literacy (54.8% versus 8.8%,P < .001) and less confident in their ability to manage their care (53.0% versus 88.1%;P < .001). Care partners were more likely than patients to perform health management activities electronically (95.5% versus 48.4%;P < .001), access the patient portal (89.2% versus 30.3%;P < .001), and use patient portal functionality such as secure messaging (39.6% versus 13.9%;P < .001). Care partners used their own credentials (89.1%) and patient credentials (23.3%) to access the patient portal. DISCUSSION AND CONCLUSION: Shared access is an underused strategy that may bridge patients' health literacy deficits and lack of technology experience and that helps but does not fully resolve concerns regarding patient and care partner identity credentials.

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02-11-2019 Article

Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records

We examined the acceptability and effects of delivering doctors’ visit notes electronically (via OpenNotes) to patients and care partners with authorized access to patients’ electronic medical records. Adult patients and care partners at Geisinger Health System were surveyed at baseline and after 12 months of exposure to OpenNotes. Reporting on care partner access to OpenNotes, patients and care partners stated that they had better agreement about patient treatment plans and more productive discussions about their care. At follow-up, patients were more confident in their ability to manage their health, felt better prepared for office visits, and reported understanding their care better than at baseline. Care partners were more likely to access and use patient portal functionality and reported improved communication with patients’ providers at follow-up. Our findings suggest that offering patients and care partners access to doctors’ notes is acceptable and improves communication and patients’ confidence in managing their care.

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02-11-2019 Article

Family Caregivers and Consumer Health Information Technology

Health information technology has been embraced as a strategy to facilitate patients’ access to their health information and engagement in care. However, not all patients are able to access, or are capable of using, a computer or mobile device. Although family caregivers assist individuals with some of the most challenging and costly health needs, their role in health information technology is largely undefined and poorly understood. This perspective discusses challenges and opportunities of engaging family caregivers through the use of consumer-oriented health information technology. We compile existing evidence to make the case that involving family caregivers in health information technology as desired by patients is technically feasible and consistent with the principles of patient-centered and family-centered care. We discuss how more explicit and purposeful engagement of family caregivers in health information technology could advance clinical quality and patient safety by increasing the transparency, accuracy, and comprehensiveness of patient health information across settings of care. Finally, we describe how clarifying and executing patients’ desires to involve family members or friends through health information technology would provide family caregivers greater legitimacy, convenience, and timeliness in health system interactions, and facilitate stronger partnerships between patients, family caregivers, and health care professionals.

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02-11-2019 Article

A national action plan to support consumer engagement via ehealth

Patient-centered care is considered one pillar of a high-performing, high-quality health care system. It is a key component of many efforts to transform care and achieve better population health. Expansion of health information technology and consumer e-health tools–electronic tools and services such as secure e-mail messaging between patients and providers, or mobile health apps–have created new opportunities for individuals to participate actively in monitoring and directing their health and health care. The Office of the National Coordinator for Health Information Technology in the Department of Health and Human Services leads the strategy to increase electronic access to health information, support the development of tools that enable people to take action with that information, and shift attitudes related to the traditional roles of patients and providers. In this article we review recent evidence in support of consumer e-health and present the federal strategy to promote advances in consumer e-health to increase patient engagement, improve individual health, and achieve broader health care system improvements.

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02-11-2019 Article

Insights Into Older Adult Patient Concerns Around the Caregiver Proxy Portal Use: Qualitative Interview Study

BACKGROUND: Electronic patient portals have become common and offer many
potential benefits for patients’ self-management of health care. These benefits could be especially important for older adult patients dealing with significant chronic illness, many of whom have caregivers, such as a spouse, adult child, or other family member or friend, who help with health care management. Patient portals commonly contain large amounts of personal information, including diagnoses, health histories, medications, specialist appointments, lab results, and billing and insurance information. Some health care systems provide proxy accounts for caregivers to access a portal on behalf of a patient. It is not well known how much and in what way caregivers are using patient portals on behalf of patients and whether patients see any information disclosure risks associated with such access. OBJECTIVE: The objective of this study was to examine how older adult patients perceive the benefits and risks of proxy patient portal access by their caregivers. METHODS: We conducted semistructured interviews with 10 older adult patients with chronic illness. We asked them about their relationship with their caregivers, their use of their patient portal, their caregiver’s use of the portal, and their perceptions about the benefits and risks of their caregiver’s use of the portals. We also asked them about their comfort level with caregivers having access to information about a hypothetical diagnosis of a stigmatized condition. Two investigators conducted a thematic analysis of the qualitative data. RESULTS: All patients identified caregivers. Some had given caregivers access to their portals, in all cases by sharing log-in credentials, rather than by setting up an official proxy account. Patients generally saw benefits in their caregivers having access to the information and functions provided by the portal. Patients generally reported that they would be uncomfortable with caregivers
learning of stigmatized conditions and also with caregivers (except spouses) accessing financial billing information. CONCLUSIONS: Patients share their electronic patient portal credentials with caregivers to receive the benefits of those caregivers having access to important medical information but are unaware of all the information those caregivers can access. Better portal design could alleviate these unwanted information disclosures.

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02-11-2019 Article

Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead

BACKGROUND: Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors’ office notes. OBJECTIVE: To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals. DESIGN: Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors’ notes. SETTING: Primary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington. PARTICIPANTS: 105 PCPs and 13 564 of their patients who had at least 1 completed note available during the intervention period. MEASUREMENTS: Portal use and electronic messaging
by patients and surveys focusing on participants’ perceptions of behaviors, benefits, and negative consequences. RESULTS: 11 797 of 13 564 patients with visit notes available opened at least 1 note (84% at BIDMC, 92% at GHS, and 47% at HMC). Of 5391 patients who opened at least 1 note and completed a postintervention survey, 77% to 87% across the 3 sites reported that open notes helped them feel more in control of their care; 60% to 78% of those taking medications reported increased medication adherence; 26% to 36% had privacy concerns; 1% to 8% reported that the notes caused confusion, worry, or offense; and 20% to 42% reported sharing notes with others. The volume of electronic messages from patients did not change. After the intervention, few doctors reported longer visits (0% to 5%) or more time addressing patients’ questions
outside of visits (0% to 8%), with practice size having little effect; 3% to 36% of doctors reported changing documentation content; and 0% to 21% reported taking more time writing notes. Looking ahead, 59% to 62% of patients believed that they should be able to add comments to a doctor’s note. One out of 3 patients believed that they should be able to approve the notes’ contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop. LIMITATIONS: Only 3 geographic areas were represented, and most participants were experienced in using portals. Doctors volunteering to participate
and patients using portals and completing surveys may tend to offer favorable feedback, and the response rate of the patient surveys (41%) may further limit generalizability. CONCLUSION: Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption. PRIMARY FUNDING SOURCE: The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.

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