Resource Center

InterOptimability Resources

Our Resource Center is a virtual library where you can go for a broad range of information relating to interoperability, information-sharing, and the six domains in which NIC primarily works: human and social services, public health, public education, public safety, emergency medical services and health information technology. 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 will add resources continually over time. The Resource Center is available to all professionals interested in the subject matter, irrespective of whether they are NIC participants.

To make the Center 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 NIC@stewardsofchange.org.

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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02-11-2019 Article

Information-Sharing Preferences of Older Patients and Their Families

Importance: Elderly patients often share control of their personal health information and decision making with family and friends when needed. Patient portals can help with information sharing, but concerns about privacy and autonomy of elderly patients remain. Health systems that implement patient portals would benefit from guidance about how best to implement access to portals for caregivers of elderly patients.
Objective: To identify how patients older than 75 years (hereinafter, elders) and family caregivers of such patients approach sharing of health information, with the hope of applying the results to collaborative patient portals. Design, Setting, and Participants: A qualitative study was conducted from October 20, 2013, to February 16, 2014, inviting participants older than 75 years (n = 30) and participants who assist a family member older than 75 years (n = 23) to 1 of 10 discussion groups. Participants were drawn from the Information Sharing Across Generations (InfoSAGE) Living Laboratory, an ongoing study of information needs of elders and families based within an academically affiliated network of senior housing in metropolitan Boston, Massachusetts. Groups were separated into elders and caregivers to allow for more detailed discussion. A professional moderator led groups using a discussion guide. Group discussions were
audiotaped, transcribed, and analyzed inductively using immersion/crystallization
methods for central themes. Main Outcomes and Measures: Central themes regarding sharing of health information between elderly patients and family caregivers. Results: Seven lessons emerged from 2 main themes. First, sharing information has consequences: (1) elders and caregivers have different perspectives on what is seen as the “burden” of information, (2) access to medical information by families can have unintended consequences, and (3) elders do not want to feel “spied on” by family. Second, control of information sharing is dynamic: (4) elders wish to retain control of decision making as long as possible, (5) transfer of control occurs gradually depending on elders’ health and functional status, (6) control of information sharing and decision making should be fluid to maximize elders’ autonomy, and (7) no “one-size-fits-all”
approach can satisfy individuals’ different preferences. Conclusions and Relevance: Information sharing and control are complex issues even under the most well-meaning circumstances. While elders may delegate control and share information with family, they want to retain granular control of their information. When using patient portals, simple proxy access may not adequately address the needs and concerns of aging patients.

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02-11-2019 Article

Designing a Patient-Centered User Interface for Access Decisions about EHR Data: Implications from Patient Interviews

BACKGROUND: Electronic health records change the landscape of patient data sharing and privacy by increasing the amount of information collected and stored and the number of potential recipients. Patients desire granular control over who receives what information in their electronic health record (EHR), but there are no current patient interfaces that allow them to record their preferences for EHR access. OBJECTIVE: Our aim was to derive the user needs of patients regarding the design of a user interface that records patients’ individual choices about who can access data in their EHRs. DESIGN: We used semi-structured interviews. SETTING: The study was conducted in Central Indiana. PARTICIPANTS: Thirty patients with data stored in an EHR, the majority of whom (70 %) had highly sensitive health EHR data, were included in the study. APPROACH: We conducted a thematic and quantitative analysis of transcribed interview data. KEY RESULTS: Patients rarely knew what data were in their EHRs, but would have liked to know. They also wanted to be able to control who could access what information in their EHR and wanted to be notified when their data we re accessed.
CONCLUSIONS: We derived six implications for the design of a patient-centered tool to allow individual choice in the disclosure of EHR: easy patient access to their EHRs; an overview of current EHR sharing permissions; granular, hierarchical control over EHR access; EHR access controls based on dates; contextual privacy controls; and notification when their EHRs are accessed.

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02-06-2019 Brief

Identifying the Next Drug Epidemic by Testing Municipal Wastewater (In Focus Brief)

“Opioid misuse continues to rise across the United States. One reason for the ongoing epidemic is the difficulty in obtaining real-time information on an ever-changing landscape of drug supply and demand….To address the breadth and complexity of substance abuse, a more comprehensive monitoring strategy is necessary— one that goes beyond siloed approaches focused on individual drugs or interventions. Municipal wastewater testing is an innovative approach that can augment existing data by providing more rapid, cost-effective, and unbiased measures of drug use.”

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02-06-2019 Report

Evidence-Based Strategies for Preventing Opioid Overdose: What’s Working in the United States, An introduction for public heath, law enforcement, local organizations, and others striving to serve their community

The Center for Disease Control and Prevention presents this document to assist people from various sectors in understanding and navigating strategies to prevent opioid overdose within their communities. Successful evidence-based practices, that have been used in U.S states and municipalities, serve as examples of how strategies can be put into practice. The combinations of evidence, expertise and community dialogue are needed for effective prevention strategies across the U.S.

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02-06-2019 Brief

What Makes an Early Childhood Medicaid Partnership Work? Insights from Three Cross-Sector Collaborations

As part of the Medicaid Early Childhood Innovation Lab, led by the Center for Health Care strategies (CHCS), CHCS assisted 6 pilot sites as part of a national initiative to support young children and their families- through interventions in physical health, mental health and social determinants of health. The goal of this Medicaid-driven strategy is to improve future population health by supporting early childhood interventions and addressing whole family units through breaking down siloes and working together.

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