JUNTOS Radio: a podcast created in collaboration with Spanish-speaking healthcare providers, Juntos Center for Advancing Latino Health, and a medical librarian.

Spanish speaking healthcare providers, JUNTOS Center for Advancing Latino Health, and a medical librarian partnered to create a podcast on essential health topics relevant to the Latinx community. The podcasts were recorded in Spanish and included Spanish supplementary consumer health information from credible resources such as MedlinePlus en Espanol. The podcasts covered important topics about COVID-19 such as vaccines, clinical trials, and social distancing. It also includes other relevant topics that are affecting the Latinx community.

A randomized controlled trial of generic and localized MedlinePlus-based information resources for hard-to-reach urban Hispanic community.

OBJECTIVE: To determine if the Conexion digital localized health information resource about diabetes and depression could increase patient activation among Hispanic low-income adults. MATERIALS AND METHODS: A nonblinded randomized controlled trial was conducted (NCT03984929). Participants at least 18 years old living in Washington Heights/Inwood, New York, were recruited from the community between July 2019 and August 2020 and randomized 1:1 to either the intervention group (localization of MedlinePlus resources customized with community components) or the control group (no localized community components). The primary outcome, patient activation, and secondary outcomes, knowledge, self-efficacy, and behavior change, were collected through surveys at 1-month follow-up. RESULTS: Of the 134 participants recruited, 50.7% (n = 68) completed the 1-month follow-up. We found no statistically significant differences in the sociodemographic and baseline characteristics between those who missed the 1-month survey and those who completed it. No significant differences were observed in patient activation at 1-month. However, patient activation among all participants (n = 68) significantly increased (P = .048). Statistically significant improvements were also found in self-efficacy (P < .03). In multivariate analysis, birth country outside the United States and higher self-rated attachment to the community emerged as significant predictors of higher patient activation scores. DISCUSSION: While the trial did not detect significant differences between groups, all participants demonstrated increased patient activation scores and improved secondary outcomes. While other factors may have contributed to this increase, our study suggests that access to carefully selected high-quality health information materials delivered digitally in the context of a community may result in improvements comparable to localized content in a hard-to-reach urban Hispanic population. CONCLUSIONS: Our study highlights the potential of making carefully selected digital information accessible to hard-to-reach communities.

Providing Health Information for Patients, Families and the Public.

When Dr. Lindberg was sworn in as Director, the National Library of Medicine (NLM) was providing few resources with information useful to the public, having concentrated efforts towards health professionals and scientists. With his arrival, and that of the Internet in the 1990s, NLM embarked on a research and user-focused path towards providing authoritative health information for patients, families and the public. MedlinePlus, NIHSeniorHealth, and MedlinePlus en espanol delivered health information in a variety of formats using text, still images, audio and video. These resources were supported by NLM advisors and Dr. Lindberg's strong belief that patients and families needed easy access to medical information to be able to effectively care for themselves in illness and maintain the best health possible throughout their lives.

NLM's Revolution in Consumer Health Information to Improve Patient Outcomes.

Under the leadership of NLM Director Donald A.B. Lindberg M.D., the National Library of Medicine (NLM) continued to promote its services to the nation's health care professionals and scientists. With support of the U.S. Congress, it initiated new communications and outreach programs and services directed at the general public that revolutionized their access to information as well. Because effective health communication must be tailored for the audience and the situation, Lindberg supported the development of online health information tools designed to help consumers find free, comprehensive, timely, and trustworthy sources of health information that, ultimately, can improve patient outcomes. New and popular consumer-friendly websites were championed by Lindberg, including MedlinePlus, and ClincialTrials.gov, and he formed unique partnerships with national physician organizations to educate their patients about reliable sources of health information from the NLM. A new era of timely and trusted online health information for the general public began in 2006 under Lindberg's tenure culminating in the development, publication and distribution of NIH's first consumer magazine, NIH MedlinePlus, featuring the research and findings of the NIH. In his effort to improve patient outcomes, Dr. Lindberg revolutionized the Library's outreach capabilities and successfully expanded its mission to serve not only health professionals and scientists, but also consumers nationwide.

Health sciences librarians supporting health and nutrition education in a culinary medicine curriculum.

BACKGROUND: Culinary medicine is an innovative approach to teaching health sciences students and other health professionals the basics of healthy eating, food preparation, and nutrition through applied instruction. It is hoped these professionals will, in turn, share their knowledge with patients. The University of South Alabama Mitchell Cancer Institute licensed the Tulane University's Goldring Center for Culinary Medicine curriculum and began teaching medical, nursing, and other health sciences students as well as community members in 2017. The authors describe a collaboration between librarians and health professionals to connect with underserved community members by teaching the basics of good nutrition and healthy meal preparation. CASE PRESENTATION: Two health sciences librarians provided instruction to community members in the use of quality health information resources during various modules of the culinary medicine curriculum. Demonstrations of the use of MedlinePlus and ChooseMyPlate were conducted using topics from module content. Evaluations were distributed after each module to evaluate the effectiveness of the library component, the results of which enabled librarians to subsequently increase their instruction time and implement iPad use for more engaging participation. CONCLUSION: Librarians were seen as invaluable partners in this innovative program and became an integral part of the curriculum. Evaluation results helped librarians advocate for more instructional time. As a result of their involvement, librarians were given additional outreach opportunities to educate younger populations at risk of developing chronic health diseases.

MedlinePlus at 21: A Website Devoted to Consumer Health Information.

This report is about the consumer health website MedlinePlus.gov. The latter website was created by the U.S. National Library of Medicine and features content produced by the U.S. National Institutes of Health. The report provides an overview, origin, content, and possible future evolution of the website. The report also spotlights the specific features of the MedlinePlus health topic on health literacy and discusses the PubMed Topic Specific Query on health literacy.

Quantitative readability analysis of websites providing information on traumatic brain injury and epilepsy: A need for clear communication.

OBJECTIVE: The use of the Internet for health-related questions is increasing, but it is not clear whether individuals can understand the information available online. Most health organizations recommend that health educational materials (HEMs) be written below the sixth grade reading level. This study was designed to evaluate the readability level of available online HEMs pertaining to traumatic brain injury (TBI), epilepsy, and posttraumatic epilepsy (PTE). METHODS: This cross-sectional readability assessment included HEMs from TBI and epilepsy stakeholder organizations and those obtained from four Internet searches. The search strategy was designed to replicate a nonmedical individual's keyword searches. Each HEM was assessed with an online automated readability tool using three indices (Flesch Reading Ease Score, Flesch-Kincaid Grade Level, and Simple Measure of Gobbledygook). Findings were compared as a function of organization type (journalistic news or health organization), targeted medical condition (TBI, epilepsy, or PTE), or content topic (patient health education, clinical research education, or both). RESULTS: Readability analysis of 405 identified HEMs revealed scores above the sixth grade reading level recommendation. Only 6.2% of individual HEMs met the sixth grade recommendation. Journalistic news organizations' HEMs had similar readability levels to health organizations' HEMs. PTE-related HEMs required the highest readability level, >11th grade (P < .001). There were significant differences in the readability scores (P < .01 for all indices) among HEMs with information on health education, research education, or both topics. The highest required readability level (>12 grade level) was for HEMs that included both health and research education. SIGNIFICANCE: The majority of TBI-, epilepsy-, and PTE-related online HEMs do not meet the sixth grade reading recommendation. Improving the readability of HEMs may advance health literacy around TBI, epilepsy, and PTE, leading to more effective participant recruitment/retention strategies for future antiepileptogenesis trials in persons with TBI and perhaps better patient-centered outcomes.

Consumer health information and question answering: helping consumers find answers to their health-related information needs.

OBJECTIVE: Consumers increasingly turn to the internet in search of health-related information; and they want their questions answered with short and precise passages, rather than needing to analyze lists of relevant documents returned by search engines and reading each document to find an answer. We aim to answer consumer health questions with information from reliable sources. MATERIALS AND METHODS: We combine knowledge-based, traditional machine and deep learning approaches to understand consumers' questions and select the best answers from consumer-oriented sources. We evaluate the end-to-end system and its components on simple questions generated in a pilot development of MedlinePlus Alexa skill, as well as the short and long real-life questions submitted to the National Library of Medicine by consumers. RESULTS: Our system achieves 78.7% mean average precision and 87.9% mean reciprocal rank on simple Alexa questions, and 44.5% mean average precision and 51.6% mean reciprocal rank on real-life questions submitted by National Library of Medicine consumers. DISCUSSION: The ensemble of deep learning, domain knowledge, and traditional approaches recognizes question type and focus well in the simple questions, but it leaves room for improvement on the real-life consumers' questions. Information retrieval approaches alone are sufficient for finding answers to simple Alexa questions. Answering real-life questions, however, benefits from a combination of information retrieval and inference approaches. CONCLUSION: A pilot practical implementation of research needed to help consumers find reliable answers to their health-related questions demonstrates that for most questions the reliable answers exist and can be found automatically with acceptable accuracy.

Genetics Home Reference: A Review.

Genetics Home Reference is a free, online resource created and maintained by the National Library of Medicine. It is designed to provide genetic information to a wide variety of audiences, particularly the general public. The site consists of original information and links to other curated resources.

MedlinePlus Videos & Cool Tools: MedlinePlus

This video describes about the MedlinePLUS, a database designed specifically for caregivers, health consumers, patients and family members. It show how to realise a research on a specific subject or disease with examples of videos and all the resources available in the database.

Promoting MedlinePlus utilization in a federally qualified health center using a multimodal approach.

BACKGROUND: Most patients want more health information than their clinicians provide during office visits. Written information can complement information that is provided verbally, yet most primary care practices, including federally qualified health centers, have not implemented systematic programs to ensure that patients receive understandable, relevant, and accurate health information at the point of care. MedlinePlus in particular is underutilized. CASE PRESENTATION: The authors conducted a multimodal intervention to promote the use of MedlinePlus at a federally qualified health center. We provided MedlinePlus training to clinicians and patients through group and one-on-one trainings and multimedia promotion. We administered pre- and post-intervention surveys to patients, clinicians, and nurses to assess changes in the use and recognition of MedlinePlus at the point of care. We used quantitative and qualitative data to understand the impact of the intervention. A National Library of Medicine grant provided resources that supported equipment and staff. Group training improved use of MedlinePlus by clinicians and staff. One-on-one training was most effective for patients, particularly when it was integrated into the work-flow. CONCLUSIONS: A multimodal approach can promote use of MedlinePlus among community health center patients. However, the process is labor- and resource-intensive and requires careful attention to work flow and leveraging of brief opportunities.

A Closer Look at Health Information Seeking by Older Adults and Involved Family and Friends: Design Considerations for Health Information Technologies.

Older adults are the largest consumers of healthcare. As part of a broader study of personal health information management (PHIM), we interviewed older adults in King County, Washington, and their involved family and friends (FF), regarding health information (HI) sources they seek and utilize. Analysis of interview transcripts revealed four main themes: 1) older adults and FF consider healthcare providers the foundational source of HI; 2) older adults utilize FF for seeking, sharing, and interpreting HI, while FF serve as surrogate seekers and experience-based experts; 3) online searching is common for older adults and FF, but confidence in assessing the quality of online HI is often lacking; 4) a smorgasbord approach is frequently utilized by older adults and FF for gathering and clarifying HI. Design considerations include: facilitating access to quality provider-vetted HI, incorporating older adults and FF in the design process, and creating shared spaces for communication of HI among older adults, FF, and providers.

Lightweight predicate extraction for patient-level cancer information and ontology development.

BACKGROUND: Knowledge engineering for ontological knowledgebases is resource and time intensive. To alleviate these issues, especially for novices, automated tools from the natural language domain can assist in the development process of ontologies. We focus towards the development of ontologies for the public health domain and use patient-centric sources from MedlinePlus related to HPV-causing cancers. METHODS: This paper demonstrates the use of a lightweight open information extraction (OIE) tool to derive accurate knowledge triples that can lead to the seeding of an ontological knowledgebase. We developed a custom application, which interfaced with an information extraction software library, to help facilitate the tasks towards producing knowledge triples from textual sources. RESULTS: The results of our efforts generated accurate extractions ranging from 80-89% precision. These triples can later be transformed to OWL/RDF representation for our planned ontological knowledgebase. CONCLUSIONS: OIE delivers an effective and accessible method towards the development ontologies.

Assessing the readability of ClinicalTrials.gov.

OBJECTIVE: ClinicalTrials.gov serves critical functions of disseminating trial information to the public and helping the trials recruit participants. This study assessed the readability of trial descriptions at ClinicalTrials.gov using multiple quantitative measures. MATERIALS AND METHODS: The analysis included all 165,988 trials registered at ClinicalTrials.gov as of April 30, 2014. To obtain benchmarks, the authors also analyzed 2 other medical corpora: (1) all 955 Health Topics articles from MedlinePlus and (2) a random sample of 100,000 clinician notes retrieved from an electronic health records system intended for conveying internal communication among medical professionals. The authors characterized each of the corpora using 4 surface metrics, and then applied 5 different scoring algorithms to assess their readability. The authors hypothesized that clinician notes would be most difficult to read, followed by trial descriptions and MedlinePlus Health Topics articles. RESULTS: Trial descriptions have the longest average sentence length (26.1 words) across all corpora; 65% of their words used are not covered by a basic medical English dictionary. In comparison, average sentence length of MedlinePlus Health Topics articles is 61% shorter, vocabulary size is 95% smaller, and dictionary coverage is 46% higher. All 5 scoring algorithms consistently rated CliniclTrials.gov trial descriptions the most difficult corpus to read, even harder than clinician notes. On average, it requires 18 years of education to properly understand these trial descriptions according to the results generated by the readability assessment algorithms. DISCUSSION AND CONCLUSION: Trial descriptions at CliniclTrials.gov are extremely difficult to read. Significant work is warranted to improve their readability in order to achieve CliniclTrials.gov's goal of facilitating information dissemination and subject recruitment.

Expanding access to high-quality plain-language patient education information through context-specific hyperlinks.

Medical records, which are increasingly directly accessible to patients, contain highly technical terms unfamiliar to many patients. A federally qualified health center (FQHC) sought to help patients interpret their records by embedding context-specific hyperlinks to plain-language patient education materials in its portal. We assessed the impact of this innovation through a 3-year retrospective cohort study. A total of 12,877 (10% of all patients) in this safety net population had used the MPC links. Black patients, Latino patients comfortable using English, and patients covered by Medicaid were more likely to use the informational hyperlinks than other patients. The positive association with black race and Latino ethnicity remained statistically significant in multivariable models that controlled for insurance type. We conclude that many of the sociodemographic factors associated with the digital divide do not present barriers to accessing context-specific patient education information once in the portal. In fact, this type of highly convenient plain-language patient education may provide particular value to patients in traditionally disadvantaged groups.

Integrating personalized health information from MedlinePlus in a patient portal.

The objective of this paper is to describe the implementation and use of context aware information in Spanish from MedlinePlus embedded in a Patient Portal. Personalized information can help patients solve problems, make treatment decisions, gain confidence in their ability to care for themselves and communicate with providers. To integrate MedlinePlus information in our institutional PHR we used the HL7 Context-Aware Knowledge Retrieval Standard, also known as the Infobutton Standard. After analysing one year of use, patients accessed MedlinePlus information in Spanish in a similar rate to other personalized information generated locally. Infobuttons associated to laboratory test results were used in approximately 10% of patients portal sessions when reviewing lab results.

The librarian's role in linking patients to their personal health data and contextual information.

The objective of this project was to make an institution's patients aware of a new patient portal with contextual links to MedlinePlus. Through partnerships with information technology personnel and LSU Health Shreveport clinics, the Health Sciences Library created and distributed promotional and educational materials and instructed patients on how to use MyChart and access reliable consumer health information via MedlinePlus Connect. Although most patients were not interested in coming to the library for demonstrations, many of them expressed interest in using MyChart. The contextual information in MedlinePlus Connect worked well for most topics. The institutional team leader for MyChart expressed gratitude for librarian involvement.

Applying multiple methods to assess the readability of a large corpus of medical documents.

Medical documents provided to patients at the end of an episode of care, such as discharge summaries and referral letters, serve as an important vehicle to convey critical information to patients and families. Increasingly, healthcare institutions are also experimenting with granting patients direct electronic access to other types of clinical narratives that are not typically shared unless explicitly requested, such as progress notes. While these efforts have great potential to improve information transparency, their value can be severely diminished if patients are unable to read and thus unable to properly interpret the medical documents shared to them. In this study, we approached the problem by contrasting the 'readability' of two types of medical documents: referral letters vs. other genres of narrative clinician notes not explicitly intended for direct viewing by patients. To establish a baseline for comparison, we also computed readability scores of MedlinePlus articles - exemplars of fine patient education materials carefully crafted for lay audiences. We quantified document readability using four different measures. Differences in the results obtained through these measures are also discussed.