Parent Satisfaction With a Telehealth Parent Coaching Intervention to Support Family Participation.

COVID-19 catalyzed telehealth practice creating opportunities for clients and providers to discern best applications. Parent satisfaction with services supports partnership within therapy processes, potentially augmenting outcomes. We examined parent satisfaction levels and experiences with the telehealth approach of a parent coaching intervention for families of children with special health care needs (CSHCNs). We used a mixed-methods descriptive design. Fifteen parents completed the Telehealth Usability Questionnaire (TUQ) and a semistructured interview. We analyzed TUQ ratings using descriptive statistics, and we thematically analyzed participants' telehealth experiences. Parents found telehealth useful, easy to use, effective, reliable, and satisfactory. Parents described that telehealth addressed needs conveniently, enhanced parent-provider communication, and fostered shared parent involvement. Telehealth appears to be a satisfactory occupational therapy service delivery approach for parents of CSHCN. Findings build preliminary evidence for understanding for whom telehealth is well suited, supporting determination of relevant, fundable telehealth services.

Effects of Telehealth Parent Coaching in Supporting Family Participation, Cohesion, and Adaptability.

Families provide foundational contexts in which most children develop and grow. For families of children with special health care needs (CSHCN), interdisciplinary supports can build family participation capacities, beyond individualistic child supports. This single-group pretest-posttest quasi-experimental study sought to determine the preliminary effects of the Healthy Families Flourish Program (HFFP), a telehealth occupation-based parent coaching intervention to promote participation, cohesion, adaptability, and communication for families of CSHCN. Eleven families, including 17 parents and 27 children, completed the 10-session intervention consisting of parent education and individualized coaching. Participants completed the Canadian Occupational Performance Measure, Goal Attainment Scaling, and the Family Adaptability and Cohesion Evaluation Scales pre-/post-intervention. Within-group comparisons showed improvements in family participation, cohesion, adaptability, and communication with Cohen's d effect sizes ranging from 0.55-3.32. Researchers found positive relationships between family participation and cohesion as well as participation and adaptability. Findings provide considerations for supporting families within socioecological contexts.

The multiple dimensions of expanded access to health information: Don Lindberg and the U.S. National Library of Medicine.

When Donald A. B. Lindberg M.D. became Director of the U.S. National Library of Medicine in 1984, trained searchers, primarily librarians, conducted less than three million searches of NLM databases. They paid for their fair share of the commercial telecommunications costs to reach NLM's computer system. In 2015 when Lindberg retired, millions of scientists, health professionals, patients, members of the public, and librarians conducted billions of free searches of NLM's greatly expanded electronic resources via the Internet. Lindberg came to NLM intending to expand access to biomedical and health information along multiple dimensions: reaching more users, providing more types and volumes of information and data; and improving the conceptual, technical, and organizational connections needed to provide information to users when and where it is needed. By any measure he and NLM were spectacularly successful. This chapter discusses some key decisions and developments that contributed to that success.

Grateful Med: Direct access to MEDLINE for health professionals with personal computers.

Donald A.B. Lindberg M.D. arrived as Director, U.S. National Library of Medicine (NLM) in late 1984 with the intention of implementing a physician-friendly interface to MEDLINE, a prime example of his interest in making NLM information services more directly useful in medical care. By early 1986, NLM's Grateful Med, an inexpensive PC search interface to MEDLINE useful for health professionals, had joined the group of end-user systems for searching MEDLINE that emerged in the 1980s. This chapter recounts Grateful Med's rapid iterative development and the subsequent campaign to bring it to attention of health professionals. It emphasizes Lindberg's role, the challenges faced by those introducing and using the interface in a pre-Internet world, and some longer-term effects of the effort to expand health professionals' use of MEDLINE during the decade from 1986 to 1996.

Something new and different: The Unified Medical Language System.

Donald A.B. Lindberg M.D. arrived at the U.S. National Library of Medicine in 1984 and quickly launched the Unified Medical Language System (UMLS) research and development project to help computers understand biomedical meaning and to enable retrieval and integration of information from disparate electronic sources, e.g., patient records, biomedical literature, knowledge bases. This chapter focuses on how Lindberg's thinking, preferred ways of working, and decision-making guided UMLS goals and development and on what made the UMLS markedly "new and different" and ahead of its time.

The U.S. National Library of Medicine and standards for electronic health records: One thing led to another.

When Donald A.B. Lindberg M.D. became Director in 1984, the U.S. National Library of Medicine (NLM) was a leader in the development and use of information standards for published literature but had no involvement with standards for clinical data. When Dr. Lindberg retired in 2015, NLM was the Central Coordinating Body for Clinical Terminology Standards within the U.S. Department of Health and Human Services, a major funder of ongoing maintenance and free dissemination of clinical terminology standards required for use in U.S. electronic health records (EHRs), and the provider of many services and tools to support the use of terminology standards in health care, public health, and research. This chapter describes key factors in the transformation of NLM into a significant player in the establishment of U.S. terminology standards for electronic health records.

The U.S. National Library of Medicine and Standards for Electronic Health Records: One Thing Led to Another.

When Donald A.B. Lindberg M.D. became Director in 1984, the U.S. National Library of Medicine (NLM) was a leader in the development and use of information standards for published literature but had no involvement with standards for clinical data. When Dr. Lindberg retired in 2015, NLM was the Central Coordinating Body for Clinical Terminology Standards within the U.S. Department of Health and Human Services, a major funder of ongoing maintenance and free dissemination of clinical terminology standards required for use in U.S. electronic health records (EHRs), and the provider of many services and tools to support the use of terminology standards in health care, public health, and research. This chapter describes key factors in the transformation of NLM into a significant player in the establishment of U.S. terminology standards for electronic health records.

Something New and Different: The Unified Medical Language System.

Donald A.B. Lindberg M.D. arrived at the U.S. National Library of Medicine in 1984 and quickly launched the Unified Medical Language System (UMLS) research and development project to help computer understand biomedical meaning and to enable retrieval and integration of information from disparate electronic sources, e.g., patient records, biomedical literature, knowledge bases. This chapter focuses on how Lindberg's thinking, preferred ways of working, and decision-making guided UMLS goals and development and on what made the UMLS markedly "new and different" and ahead of its time.

The Multiple Dimensions of Expanded Access to Health Information: Don Lindberg and the U.S. National Library of Medicine.

When Donald A.B. Lindberg M.D. became Director of the U.S. National Library of Medicine in 1984, trained searchers, primarily librarians, conducted less than three million searches of NLM databases. They paid for their fair share of the commercial telecommunications costs to reach NLM's computer system. In 2015 when Lindberg retired, millions of scientists, health professionals, patients, members of the public, and librarians conducted billions of free searches of NLM's greatly expanded electronic resources via the Internet. Lindberg came to NLM intending to expand access to biomedical and health information along multiple dimensions: reaching more users, providing more types and volumes of information and data; and improving the conceptual, technical, and organizational connections needed to provide information to users when and where it is needed. By any measure he and NLM were spectacularly successful. This chapter discusses some key decisions and developments that contributed to that success.

Grateful Med: Direct Access to MEDLINE for Health Professionals with Personal Computers.

Donald A.B. Lindberg M.D. arrived as Director, U.S. National Library of Medicine (NLM) in late 1984 with the intention of implementing a physician-friendly interface to MEDLINE, a prime example of his interest in making NLM information services more directly useful in medical care. By early 1986, NLM's Grateful Med, an inexpensive PC search interface to MEDLINE useful for health professionals, had joined the group of end-user systems for searching MEDLINE that emerged in the 1980s. This chapter recounts Grateful Med's rapid iterative development and the subsequent campaign to bring it to attention of health professionals. It emphasizes Lindberg's role, the challenges faced by those introducing and using the interface in a pre-Internet world, and some longer-term effects of the effort to expand health professionals' use of MEDLINE during the decade from 1986 to 1996.

UMLS users and uses: a current overview.

The US National Library of Medicine regularly collects summary data on direct use of Unified Medical Language System (UMLS) resources. The summary data sources include UMLS user registration data, required annual reports submitted by registered users, and statistics on downloads and application programming interface calls. In 2019, the National Library of Medicine analyzed the summary data on 2018 UMLS use. The library also conducted a scoping review of the literature to provide additional intelligence about the research uses of UMLS as input to a planned 2020 review of UMLS production methods and priorities. 5043 direct users of UMLS data and tools downloaded 4402 copies of the UMLS resources and issued 66 130 951 UMLS application programming interface requests in 2018. The annual reports and the scoping review results agree that the primary UMLS uses are to process and interpret text and facilitate mapping or linking between terminologies. These uses align with the original stated purpose of the UMLS.

How to earn a reputation as a great partner.

Boundary spanning is a core activity for health sciences librarians. To be effective, librarians must bridge internal silos and reach across borders to partner with other disciplines, groups, and organizations. Common sense strategies and practical implementation steps can help librarians to earn a reputation as a trustworthy and effective partner.

Advancing Leadership Skills: A Multiyear Examination of LEND Trainee Self-Efficacy Growth.

Purpose The current healthcare system requires Maternal and Child Health (MCH) professionals with strong interdisciplinary leadership competence. MCH training programs utilize a conceptual framework for leadership and 12 validated MCH Leadership Competencies. Examining Trainee Perceived Leadership Competence (TPLC) through the competencies has the potential to inform our understanding of leadership development. Description Five cohorts of NH-ME leadership education in neurodevelopmental disabilities trainees (n = 102) completed the MCH Leadership Competencies Self-Assessment at three time points. Paired-sample t tests examined TPLC scores. A one-way analysis of variance tested for statistically significant differences in mean difference scores. A General Linear Model was used to examine the extent to which TPLC scores changed when controlling for specific variables. Assessment Statistically significant differences in mean scores between Time 1 and Time 3 were found. Cohen's d effect sizes fell in the moderate range. A one-way ANOVA demonstrated significant differences between groups in the spheres of self and others. TPLC mean scores between Time 1 and Time 3 in the sphere of wider community had the highest increases in four out of five cohorts. Age, discipline, experience, and relationship to disability did not contribute to the model. Conclusion On average, cohorts began the year with very different evaluations of their leadership competence but finished the year with similar scores. This suggests participation in the NH-ME LEND Program consistently supported the development of leadership self-identity. Small sample sizes limit the ability to draw definitive conclusions from these results. Further study with a larger sample may reveal relationships between cohort characteristics and change scores.

Libraries and Librarians: Key Partners for Progress in Health Literacy Research and Practice.

The field of librarianship has a history of involvement in patient education, general literacy and information literacy efforts. This history and prominent placement in communities make libraries and librarians an excellent resource in advancing health literacy practice and research. This chapter provides an overview of health literacy and health information literacy efforts in US libraries over the past two decades. The chapter begins with the description of the role of the US National Library of Medicine in developing resources, programs, and partnerships serving health information needs of the public. It then overviews special training programs for increasing librarians' expertise with health information and health literacy support. The narrative also presents different models of health information outreach programs in diverse communities, focusing on serving special populations that may suffer from health disparities. The second half of the chapter describes libraries' and librarians' health information response to continuously evolving contexts, mediums, and requirements. One subsection describes librarians' outreach effort with cutting-edge technologies, such as virtual worlds and gaming. Another focuses on supporting patients' information needs in clinical settings. Two more describe how libraries meet patrons' health information needs in the context of disaster preparedness and health insurance market place sign-up. While presenting the information, to the extent possible, the chapter draws upon research and evaluation of the effectiveness of different types of programs. It also discusses enablers of successes, limitations of the existing data, and directions for future research.

Sizing the Problem of Improving Discovery and Access to NIH-Funded Data: A Preliminary Study.

OBJECTIVE: This study informs efforts to improve the discoverability of and access to biomedical datasets by providing a preliminary estimate of the number and type of datasets generated annually by research funded by the U.S. National Institutes of Health (NIH). It focuses on those datasets that are "invisible" or not deposited in a known repository. METHODS: We analyzed NIH-funded journal articles that were published in 2011, cited in PubMed and deposited in PubMed Central (PMC) to identify those that indicate data were submitted to a known repository. After excluding those articles, we analyzed a random sample of the remaining articles to estimate how many and what types of invisible datasets were used in each article. RESULTS: About 12% of the articles explicitly mention deposition of datasets in recognized repositories, leaving 88% that are invisible datasets. Among articles with invisible datasets, we found an average of 2.9 to 3.4 datasets, suggesting there were approximately 200,000 to 235,000 invisible datasets generated from NIH-funded research published in 2011. Approximately 87% of the invisible datasets consist of data newly collected for the research reported; 13% reflect reuse of existing data. More than 50% of the datasets were derived from live human or non-human animal subjects. CONCLUSION: In addition to providing a rough estimate of the total number of datasets produced per year by NIH-funded researchers, this study identifies additional issues that must be addressed to improve the discoverability of and access to biomedical research data: the definition of a "dataset," determination of which (if any) data are valuable for archiving and preservation, and better methods for estimating the number of datasets of interest. Lack of consensus amongst annotators about the number of datasets in a given article reinforces the need for a principled way of thinking about how to identify and characterize biomedical datasets.

Integrating intimate partner violence assessment and intervention into healthcare in the United States: a systems approach.

The Institute of Medicine, United States Preventive Services Task Force (USPSTF), and national healthcare organizations recommend screening and counseling for intimate partner violence (IPV) within the US healthcare setting. The Affordable Care Act includes screening and brief counseling for IPV as part of required free preventive services for women. Thus, IPV screening and counseling must be implemented safely and effectively throughout the healthcare delivery system. Health professional education is one strategy for increasing screening and counseling in healthcare settings, but studies on improving screening and counseling for other health conditions highlight the critical role of making changes within the healthcare delivery system to drive desired improvements in clinician screening practices and health outcomes. This article outlines a systems approach to the implementation of IPV screening and counseling, with a focus on integrated health and advocacy service delivery to support identification and interventions, use of electronic health record (EHR) tools, and cross-sector partnerships. Practice and policy recommendations include (1) ensuring staff and clinician training in effective, client-centered IPV assessment that connects patients to support and services regardless of disclosure; (2) supporting enhancement of EHRs to prompt appropriate clinical care for IPV and facilitate capturing more detailed and standardized IPV data; and (3) integrating IPV care into quality and meaningful use measures. Research directions include studies across various health settings and populations, development of quality measures and patient-centered outcomes, and tests of multilevel approaches to improve the uptake and consistent implementation of evidence-informed IPV screening and counseling guidelines.

Transforming LEND leadership training curriculum through the maternal and child health leadership competencies.

The purpose of this article is to describe how the Maternal and Child Health (MCH) Leadership Competencies (v 3.0) were used to examine and improve an MCH Leadership Education in Neurodevelopmental and Related Disabilities (LEND) training curriculum for New Hampshire and Maine. Over 15 % of the nation's children experience neurodevelopmental disabilities or special health care needs and estimates suggest 1 in every 68 children is diagnosed with an autism spectrum disorder. Across the Unites States critical shortages of qualified MCH professionals exist, particularly in poor and rural areas. A continued investment in training interdisciplinary leaders is critical. The MCH Leadership Competencies provide an effective foundation for leadership training through identification of requisite knowledge, skills, and dispositions required of MCH leaders. This paper describes a three-step process, which began in 2010 and included utilizing the MCH Leadership Competencies as a tool to reflect on, develop, and evaluate the NH LEND leadership curriculum. Curriculum development was further supported through participation in a multi-state learning collaborative. Through a series of intentional decisions, the curriculum design of NH LEND utilized the competencies and evidence-based principles of instruction to engage trainees in the development of specific MCH content knowledge and leadership skills. The LEND network specifically, and MCH leadership programs more broadly, may benefit from the intentional use of the MCH competencies to assist in curriculum development and program evaluation, and as a means to support trainees in identifying specific leadership goals and evaluating their leadership skill development.