Toward developing meaningful outcome measures for adult hearing health care, and an update on NIDCD’s September advisory council meeting

October 12, 2023

More than 30 million adults in the U.S. are estimated to have some degree of hearing loss. Audiologists and other health professionals use several tools to diagnose adult hearing loss, but these tools do not, in large part, assess individuals’ perceptions of their own hearing function or the impact that hearing impairment has on their quality of life.

In this director’s message, I describe NIDCD’s efforts to support the development of standard measurement outcomes in adult hearing health care that are meaningful to both the individual with hearing loss and their clinician, and how this may inform data standards for centralized repositories. I also summarize topics discussed at the September National Deafness and Other Communication Disorders Advisory Council Meeting.

Developing Meaningful Outcome Measures for Adult Hearing Health

Although health professionals use varying tests to measure hearing function in adults, these tools do not sufficiently reflect how an individual perceives the degree of their hearing impairment, nor the effect that hearing loss has on their lives. The audiogram is the gold standard for measuring the degree and type of hearing loss, but it does not assess a patient’s self-reported hearing function. In addition, there is limited agreement on audiogram endpoints that establish whether an intervention (such as a pharmaceutical treatment) is effective.

Recently, the National Academies of Sciences, Engineering, and Medicine (NASEM) announced the formation of an ad hoc committee to conduct a study addressing the state of the science in outcome measures for adult hearing health care and make recommendations about standardized measures that can be currently used and developed. The NASEM committee, with support from NIDCD, the National Institute on Aging, and other federal partners, aims to:

  • Identify a core set of standard outcome measures to assess hearing function in adults.
  • Define additional outcomes beyond the domain of communication that should be considered (e.g., social connectivity, activity limitations, participation restrictions, economic productivity).
  • Recommend next steps in developing standardized, meaningful measures that can be used in a variety of settings in the context of large-scale adoption and standardization.

To launch this effort, NASEM created an open nomination process to aid in the selection of the 14-member panel of experts who will comprise this ad hoc committee. Committee volunteers will have expertise in hearing health care; the development and validation of patient outcome measures and their relevance to self-report; the causes of hearing loss; interventions for hearing disorders; and health equity. The public is also welcome to provide feedback on the project and the committee member composition. Although the primary focus of NASEM’s ad hoc committee is to establish meaningful outcome measures of adult hearing health care, committee members will also consider how their recommendations could eventually inform data standards for large-scale applications, such as national databases and repositories.

National Deafness and Other Communication Disorders Advisory Council Meeting, September 14-15

On September 14-15, the institute’s advisory council convened at the National Institutes of Health in Bethesda, Maryland. Portions of our council meetings are open to the public, and I invite you to watch the archived videocasts of the September 14 and September 15 open sessions. I also encourage you to join us online for our next meeting, to be held January 25-26, 2024. A few highlights from September’s meeting are summarized below.

  • I announced new Advisory Council members: Katherine Bouton, Daniel Merfeld, Ph.D., and Susan Thibeault, Ph.D. I later recognized the dedicated efforts of the departing Advisory Council members: Ruth Anne Eatock, Ph.D., Barbara Kelley, Dan Sanes, Ph.D., and Ben Strowbridge, Ph.D. To view these segments, start at the 04:15 and 2:54:12 marks of the September 14 videocast, respectively.
  • I provided an update on diversity initiatives facilitated by NIDCD’s first Chief Diversity Officer, Cendrine Robinson, Ph.D., M.P.H. In the last year, Dr. Robinson has partnered with NIH UNITE to identify diversity-focused funding opportunities and administrative supplements, and has advanced NIDCD funding opportunities and programs with a focus on diversity, equity, inclusion, and accessibility (DEIA). She has also collaborated with internal working groups to enhance DEIA efforts among NIDCD staff and participated in numerous conferences to promote awareness of the institute’s programs among underrepresented populations. To view this segment, start at the 23:40 mark of the September 14 videocast.
  • I announced the next lecture in the NIDCD Director’s Seminar Series: Advancing the Science of Communication to Improve Lives. On October 25, 2023, Adam Resnick, Ph.D., Director of the Center for Data-Driven Discovery in Biomedicine at the Children’s Hospital of Philadelphia, will speak in our second seminar, “From Data Sets to Data Platforms to Data Ecosystems: The Emerging Landscape of Collaborative Cross-Disease Discovery and Accelerated Clinical Translation,” followed by a moderated discussion with invited NIH scientists. To view this segment, start at the 26:13 mark of the September 14 videocast.
  • Two speakers discussed data repository models and data standards:
    • Anup Mahurkar, Executive Director of Software Engineering and Information Technology at the University of Maryland’s Institute for Genome Sciences, provided a history of data sharing and of data-sharing policies within NIH. He illustrated several models for sharing and accessing data, and he summarized the importance of data standards to ensure findability, accessibility, interoperability, and reusability. To view this segment, start at the 32:00 mark of the September 14 videocast.
    • Lu Wang, Ph.D., Chief of the Translational Genomics Research Branch at the National Institute of Dental and Craniofacial Research (NIDCR), described a 12-member working group focused on providing recommendations to NIDCR for a data science strategy to facilitate data-intensive translational research in dental, oral, and craniofacial disorders. Dr. Wang also outlined the history and evolution of NIDCR’s FaceBase data repository and described datasets relevant to the NIDCD community. To view this segment, start at the 1:03:20 mark of the September 14 videocast.
  • Kelly King, Au.D., Ph.D., NIDCD Program Officer within the Division of Scientific Programs, provided an overview of NIDCD’s contract with NASEM to develop meaningful outcome measures in adult hearing health care. She noted that the contract launched in July 2023, and the NASEM committee’s findings should be published in early 2025. To view this segment, start at the 1:46:13 mark of the September 14 videocast.
  • Valentina Parma, Ph.D., Assistant Director of the Monell Chemical Senses Center, presented on the potential benefits of universal smell testing. She described studies showing that self-reported smell loss was predictive of positive COVID‑19 status; the impact of smell loss on quality of life and well-being; and the utility of smell and taste as biomarkers for nutrition, mental health, and brain health. She also discussed the feasibility of currently available smell tests for population screening of smell function. To view this segment, start at 2:03:30 mark of the September 14 videocast.
  • We also heard several updates from NIH intramural research program (IRP) representatives:
    • Lisa Cunningham, Ph.D., NIDCD Scientific Director, provided updates from the institute’s Division of Intramural Research, including the NIDCD Blue Ribbon Panel’s recommendations for setting and implementing strategic priorities, and the 10th annual weeklong NIDCD course, “EARssentials: Concepts and Techniques of Contemporary Hearing Loss.” To view this segment, start at the 01:00 mark of the September 15 videocast.
    • Nina Schor, M.D., Ph.D., NIH Deputy Director for Intramural Research, gave an overview of the NIH Intramural Research Program (IRP), including training and career development opportunities and DEIA efforts to ensure a continuous influx of talented, diverse intramural researchers. To view this segment, start at the 21:00 mark of the September 15 videocast.

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