40 Years of Progress: It’s Time to End the HIV Epidemic

Guest post by Maureen M. Goodenow, PhD, Associate Director for AIDS Research and Director, Office of AIDS Research, National Institutes of Health

On June 5th, the National Institutes of Health (NIH) Office of AIDS Research (OAR) joined colleagues worldwide to commemorate the 40th anniversary of the landmark 1981 Centers for Disease Control and Prevention (CDC) Morbidity and Mortality Weekly Report (MMWR) that first recognized the syndrome of diseases later named AIDS. June 5th also marks HIV Long-Term Survivors Awareness Day. 

Forty years ago, the CDC’s MMWR described five people who were diagnosed with Pneumocystis carinii pneumonia—catalyzing a global effort that led to the identification of AIDS, and later, the virus that causes AIDS.

Over the years, much of the progress to guide the response to HIV has emerged from research funded by the NIH, and helped turn a once fatal disease into a now manageable chronic illness. This progress is attributable in large part to the nation’s longstanding HIV leadership and contributions at home and abroad.

NIH is taking action to recognize the milestones achieved through science, pay tribute to more than 32 million people who have died from AIDS-related illness globally (including 700,000 Americans), and support the goal of Ending the HIV Epidemic in the U.S. (EHE) and worldwide. OAR is coordinating with NIH Institutes, Centers, and Offices (ICOs) to share messaging that will continue through NIH’s World AIDS Day commemoration on December 1, 2021.

The NIH remains committed to supporting basic, clinical, and translational research to develop cutting-edge solutions for the ongoing challenges of the HIV epidemic. The scientific community has achieved groundbreaking advances in the understanding of basic virology, human immunology, and HIV pathogenesis and has led the development of safe, effective antiretroviral medications and effective interventions to prevent HIV acquisition and transmission.

Nevertheless, HIV remains a serious public health issue.

NIH established the OAR in 1988 to ensure that NIH HIV/AIDS research funding is directed at the highest priority research areas, and to facilitate maximum return on the investment. OAR’s mission is accomplished in partnership within the NIH through the ICs that plan and implement specific HIV programs or projects, coordinated by the NIH HIV/AIDS Executive Committee. As I reflect on our progress against HIV/AIDS, I would like to note the collaboration, cooperation, innovation, and other activities across the NIH ICOs in accelerating HIV/AIDS research.

Key scientific advances using novel methods and technologies have emerged in the priority areas of the NIH HIV research portfolio. Many of these advances stem from NIH-funded efforts, and all point to important directions for the NIH HIV research agenda in the coming years, particularly in the areas of new formulations of current drugs, new delivery systems, dual use of drugs for treatment and prevention, and new classes of drugs with novel strategies to treat viruses with resistance to current drug regimens.

Further development of long-lasting HIV prevention measures and treatments remains at the forefront of the NIH research portfolio on HIV/AIDS research.

NIH-funded investigators continue to uncover new details about the virus life cycle, which is crucial for the development of next generation HIV treatment approaches. Additionally, the NIH is focused on developing novel diagnostics to detect the virus as early as possible after infection.

Results in the next two years from ongoing NIH-supported HIV clinical trials will have vital implications for HIV prevention, treatment, and cure strategies going forward. For example, two NIH-funded clinical trials for HIV vaccines, Imbokodo and Mosaico, are evaluating an experimental HIV vaccine regimen designed to protect against a wide variety of global HIV strains. These studies comprise a crucial component of the NIH’s efforts to end the HIV/AIDS epidemic.

As we close on four decades of research, I look forward to the new advances aimed at prevention and treatment in the years to come.

You can play a role in efforts to help raise awareness and get involved with efforts to end the HIV epidemic. Visit OAR’s 40 Years of Progress: It’s Time to End the HIV Epidemic webpage, and use the toolkit of ready-to-go resources.

Dr. Goodenow leads the OAR in coordinating the NIH HIV/AIDS research agenda to end the HIV pandemic and improve the health of people with HIV. In addition, she is Chief of the Molecular HIV Host Interactions Laboratory at the NIH.

Reflect, Reimagine, Reenergize TOGETHER

Guest post by Patricia Flatley Brennan, Director, NLM; Dianne Babski, Associate Director for Library Operations, NLM; and Amanda J. Wilson, Chief of the Office of Engagement and Training, NLM.

Welcome to NLM @ MLA ’21 vConference! This year, for the Medical Library Association (MLA) virtual meeting, we organized NLM’s activities around three themes:

  1. Reflect on the impact of the past year,
  2. Reimagine our work to make what we do better, and
  3. Reenergize by reconnecting with NLM colleagues and embracing the new normal! 

This year offered many opportunities to pause and reflect. We were struck by the emergence of the COVID-19 pandemic, the global response of lockdowns, personal adoption of public health measures, and more than 1.7 billion vaccine doses already administered worldwide. Our reflections led us to a reaffirmation of the importance of medical libraries as a source of trusted health information and the critical need for work-life balance in everyone’s lives. Like others around the world, we looked on in horror and dismay at repeated episodes of violence and injustice inflicted upon communities of color. We hope that our partners around the country will join the momentum surrounding the NIH UNITE initiative to end structural racism and racial inequalities in the health research enterprise.

The maximum telework posture of NLM and many other industries prompted reimagining our work life now and in the future. We structured many of our NLM @ MLA ’21 presentations to share our experiences of working at a distance, video conferencing, and providing library services during a time when the physical doors of libraries are closed.

We hope that the opportunity to gather in spirit, rather than in person, brings the reenergizing atmosphere that often comes with greeting old friends and meeting new colleagues. We hope you’ll take advantage of the opportunities to gather around professional conversations and social engagement.

NLM at the Medical Library Association 2021 vConference

NLM’s participation at the MLA ’21 vConference began on May 17th and will continue through May 27th. One of the advantages of a virtual symposium is that you’re not restricted to viewing a session once – all NLM sessions will be available online after May 27th.

NLM began this year’s conference with a full day symposium introducing the 2021-2026 Network of the National Library of Medicine (NNLM). The day started with a celebration of NNLM accomplishments to date, particularly over the last 5 years. This session attracted more than 250 attendees who reflected on where NLM has been. For example, do you know the highest number of regions that the NNLM ever had? Was it 9, 11, or 50? Or, how much outreach funding NNLM awarded to communities in the last year? Over or under $1 million? This session also provided an overview of how the Network has been reimagined for the 2021-2026 cooperative agreement, and is being reenergized though exciting and innovative programming and projects. Find these answers and what else is in store for the Network on the NNLM @ MLA day page!

During last week’s dedicated exhibit time, we hosted 33 one-hour Meet the Experts sessions, involving over 50 speakers covering a wide range of topics including data science practice, PubMed and PubMed Central, tools for scholarly publishing, the 2020-2021 Associate Fellows cohort and projects, intramural training at NLM, consumer health resources, health data standards, and many more – whew! The “NNLM Reading Club: A Vehicle for Starting Health Conversations” took top marks for being the most popular session.

We also provided special highlights of NLM’s response to COVID-19 in the Exhibitor Solution Showcase. NLM’s Dina Demner-Fushman, MD, PhD, Valerie Florance, PhD, Yanli Wang, MD, PhD, Amanda Wilson, MSLS, and Robin Taylor, MLIS, presented on topics such as TREC-COVID, a competition applying national language processing to resolve challenges related to COVID-19; the Rapid Acceleration of Diagnostics projects designed to speed COVID-19 testing, and to identify new ways of detecting COVID-19 in people and in the environment (think of an electronic nose or waste water sampling); the Post-Acute Sequelae of SARS-CoV-2 Infection Initiative, now known as ReCOVer; and how common data elements are making the data acquired through COVID-19 studies harmonized and available for researchers in the future. 

Teresa Zayas Cabán, PhD, NLM’s Assistant Director for Policy Development, presented updates and priorities from NLM and NIH at the Legislative Update session, and, not-for-profit Stop Foodborne Illness executive, Mitzi D. Baum, MS, delivered remarks on the topic of public health and food safety as the keynote speaker for this year’s Joseph Leiter NLM/MLA Lectureship. You can take a deep dive into the NLM@MLA’21 website where you can find links to the 2021 Leiter Lecture recording; NLM and NNLM On-Demand Presentations, Lightning Talks; Immersion Sessions; biographies for NLM and NNLM staff participating in the Meet the Experts sessions; and more!

As we close out our participation in the MLA ’21 vConference, our last don’t miss events are:

  • Take a Break with Dr. Patricia Flatley Brennan on May 26 at 6 pm (CT). Join Dr. Brennan for a signature trivia evening break. Join Us!
  • The ever-popular, annual NLM Update, May 27 at 10:15 am (CT), this year featuring NLM Director Patricia Flatley Brennan, RN, PhD; Associate Director for Library Operations Dianne Babski; and Acting Director, Lister Hill National Center for Biomedical Communications, Olivier Bodenreider, MD, PhD.

Reflect. Reimagine. Reenergize.

As we reflect on our experience at the MLA ’21 vConference, our interactions with colleagues has provided even more insight to reimagine our work to make what we do better, and reenergize as we embrace the new normal!

Which element of this year’s theme do you relate to most? Why?

(left to right)
Dianne Babski, Associate Director for Library Operations at NLM
Patricia Flatley Brennan, RN, PhD, NLM Director
Amanda J. Wilson, Chief, Office of Engagement and Training at NLM

What Health Literacy Outreach Looks Like at NLM

Guest post by M. Nichelle Midón, Project Scientist, Office of Engagement and Training, National Library of Medicine.

Earlier this year, NLM Director Dr. Patricia Flatley Brennan shared insights about how we, at NLM, support individual and organizational health literacy. As the world’s largest biomedical library, NLM provides physical and digital access to trusted, quality health information with the ability to reach people where they live, work and play.

One way we do this is through our Network of the National Library of Medicine (NNLM), which leverages more than 8,000 academic health science libraries, hospital and public libraries, and community organizations across the United States to promote health literacy and ensure that NLM resources are accessible to the public. NNLM develops and offers programs that affect communities in meaningful ways.  

One of NNLM’s recent success stories is Project TORDS (Technology Outreach to Reduce Health Disparities and Stigma). Tony Nguyen, MLIS, AHIP, executive director of the NNLM Southeastern Atlantic Region, recently described the program, saying “Project TORDS is designed to increase access to technology in rural and underserved communities in southern West Virginia by providing training on the use of technology while showing participants how to access, evaluate and use online health information, such as NLM’s MedlinePlus.”

According to Darryl Cannady, the executive director of South Central Educational Development, Inc., a local, community-based organization participating in Project TORDS, “Living in rural, poverty stricken Southern West Virginia, where residents live with many health disparities and social determinants of health, we have to create innovative ways to reach the most disenfranchised communities and provide the needed access to health education and access to quality health care. Project TORDS helps bridge gaps and connect the dots to health education and resources, while simultaneously reducing stigma through education.”

Watch all about it: Project TORDS

Click to learn more about the impact of Project TORDS.

Other NNLM health literacy outreach programs include the Wash and Learn and Promotores de Salud programs.

The Wash and Learn program transforms local laundromats into informal learning spaces where people can access early-learning literacy materials as they wait for their clothes to wash and dry.

NLM’s outreach to Promotores de Salud, the Spanish term for “community health workers,” reaches vulnerable and underserved members of the Latino/Hispanic community with health information and resources.  These outreach efforts include sessions that promote awareness of culturally appropriate health information from NLM.

Watch all about it: Wash and Learn

Click to watch how NNLM supports improving health literacy at a local laundromat.

Watch all about it: Promotores de Salud

Click to watch Promotores de Salud in action.

Join us in celebrating Health Literacy Month this October – what does health literacy month mean to you?

M. Nichelle Midón works with NLM’s National Network of Libraries of Medicine (NNLM) to provide researchers, health professionals, public health workforce, educators, and the public with equal access to biomedical and health information resources. She holds a Bachelor of Science in public health from the University of North Carolina at Chapel Hill, a Master of Science in library and information science from the Catholic University of America, and a Master of Science in instructional technology from Towson University.

Individual and Organizational Health Literacy: A Key to the Future of Health

As the Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030 prepares its new statement for Healthy People 2030, NLM has been asked to review and comment on the definition of health literacy. This request has provided a good opportunity for me to consider how NLM facilitates health literacy — but more about that in a minute.

As a concept, health literacy has generated much attention and debate over the past 15 years. In 2004, the Institute of Medicine (now the National Academies of Sciences, Engineering, and Medicine) released Health Literacy: A Prescription to End Confusion. This report laid the groundwork for the idea that health literacy is more than the capacity of an individual to obtain, process, and understand the basic health information needed to make appropriate health decisions. Health literacy also involves system-level factors such as education, health services, and social and cultural influences.

This idea — of organizational health literacy — encompasses the ways in which services, organizations, and systems make health information and resources available and accessible to people, according to their individual health literacy strengths and limitations.

The white paper Ten Attributes of Health Literate Health Care Organizations proposes that health literate organizations share the following characteristics:

  1. Has leadership that makes health literacy integral to its mission, structure, and operations
  2. Integrates health literacy into planning, evaluation measures, patient safety, and quality improvement
  3. Prepares the workforce to be health literate and monitors progress
  4. Includes populations served in the design, implementation, and evaluation of health information and services
  5. Meets the needs of populations with a range of health literacy skills while avoiding stigmatization
  6. Uses health literacy strategies in interpersonal communications and confirms understanding at all points of contact
  7. Provides easy access to health information and services and navigation assistance
  8. Designs and distributes print, audiovisual, and social media content that is easy to understand and act on
  9. Addresses health literacy in high-risk situations, including care transitions and communications about medicines
  10. Communicates clearly what health plans cover and what individuals will have to pay for services

NLM contributes widely to individual health literacy. We provide information in many forms, from scientific articles in PubMed Central to health and wellness information for patients and their families and friends through MedlinePlus.

But what do we do in support of organizational health literacy?

When it comes to the accessibility of health information and services, we leverage technology to provide a range of machine-accessible pathways to our offerings. For example, our ClinicialTrials.gov application programming interface allows organizations to extract the clinical trials located in an organization’s specific region and display them on the organization’s own portal.

NLM’s MedlinePlus Connect allows health organizations and health information technology providers to link patient portals and electronic health record systems to MedlinePlus, supporting the in-the-moment delivery of personalized health information. We also foster the goals of organizational health literacy through our National Information Center on Health Services Research and Health Care Technology, which provides information on health services research and quality improvement as well as resources for public health professionals.

Please think about how NLM can better support health literacy — either individual or organizational — and share your ideas with me. It’s a key to the future of health!


Envisioning a Future of Better Patient Self-Management

For years, I’ve talked about the “care between the care,” which occurs between patients’ visits to the hospital, clinic, or ER. It’s abundantly clear that the real action is happening in everyday life, yet so much of our clinician education, information technology development, and standards of practice address only that very short time when patients are in the presence of physicians, nurses, pharmacists, or other providers.

We need to devise more interventions that target the care that happens between provider visits.

Like many directors of National Institutes of Health (NIH) Institutes, I have an active research program on the NIH campus. My lab, the Advanced Visualization Branch (AVB), is in the Division of Intramural Research at the National Institute of Nursing Research (NINR). The lab is motivated by one simple question: How can we help people with chronic conditions who are living at home better self-manage?

To address this question, we’re using a whole new set of methodologies involving immersive virtual reality (VR). VR is emerging as a robust research tool that lets investigators create realistic-appearing environments to study human behavior. This approach is particularly important for research on the challenges of self-management at home because the systematic study of behavior requires that we visit the same space repeatedly — something that’s hard to do with people in their homes in real life!

The AVB develops and evaluates augmented reality (AR) and VR experiences that engage participants in multisensory activities and examine their impact on health behaviors. Specifically, we develop interactive VR simulations that present health information to people with a variety of complex health conditions. These simulations provide visual cues that immerse participants in everyday settings.

Research demonstrates that teaching self-management skills is more successful and has a greater impact if those skills are taught in the environment where they will be used. There’s something about visual cues and spatial layouts that seems to reinforce the teaching process and help people develop new patterns.

Simulations that enable people to rehearse problem-solving behaviors in familiar, realistic-appearing environments foster improved health outcomes at home. AR/VR simulations also allow us to experiment with new ways of presenting information that aren’t possible right now but could be in the future.

Photo: University of WisconsinMadison

We could investigate, for example, whether a display of nutrition facts that hovers over a food container leads people to make more appropriate food choices. In addition, we’re developing methods to measure the impact of using AR/VR technology as a tool to aid disease-management nursing strategies during the transition from acute care settings to outpatient environments. Our work will help generate recommendations for how to best use emerging technologies in all types of patient care.  

The cross-disciplinary AVB team comprises staff with expertise in nursing research, informatics, neuropsychology, and digital engineering. The team creates virtual environments to observe, quantify, and assess objective indicators of behavior (e.g., performance, physiological) and subjective perceptions (e.g., mood, user experience, self-rated symptoms) in controlled, complex environments. The results are then used to evaluate individual differences in symptom expression, the delivery of effective health care education, and the utility of VR in engaging patients and improving health-related behaviors.

Photo: Advanced Visualization Branch, NINR

Currently, the AVB’s research focuses on environments for studying the impact of fatigue on everyday activities, evaluating interventions targeting dietary choices by individuals with chronic medical conditions, and helping people better use pillboxes for safe medication management at home.  

While the main focus of my work life is leading NLM, conducting a program of research at NINR enriches my thinking and helps me envision new ways for the Library’s resources to reach people. My research as a nurse-investigator will engender new ideas and help us devise new strategies for delivering the important, consumer-oriented information provided by NLM through our outreach initiatives and MedlinePlus.

Maybe you could help us, too! Researchers interested in the use of technology for patient self-management might consider submitting an application to our Personal Health Libraries for Consumers and Patients grant opportunity.