October 28-29, 2024
Virtual Workshop
Workshop Summary
Participants explored four key themes in roundtable discussions:
- Etiology and prevention in low resource settings
- Transforming access to health care
- Technology development for low resource settings
- Capacity building
This workshop summary describes participants’ discussions within broad categories.
Need for research and treatment prioritization due to limited budgets
The NIH budget is challenging. The subject matter experts at this workshop aim to help NIDCD identify top priorities and the resources that can be leveraged to expand the impact of global health in NIDCD mission areas.
Global health success requires partnerships
Successful global health researchers understand the importance of forming partnerships. Participants shared examples of partners:
- Local governments and policymakers
- Epidemiologists
- Midwives
- Rural health care clinics
- Community health workers
- Primary care physicians
- Economists
- Spiritual leaders
- Local radio station DJs (for advertising/public service announcements)
Importance of global collaborations and partnerships
It is critical that investigators gather input from individuals living in the country of interest and ask those individuals to provide details about their daily lives. If the local government, community, and policymakers support and participate in developing an intervention, it is more likely to be accepted. Local input can help to fit an intervention into the existing health care system and adapt it to be included in individuals’ daily lives. Experienced partners in the country of interest can also teach investigators to leverage existing international organizations as they work to build capacity and infrastructure.
Global health impact can be increased by creating networks across countries and regions that share a language, including:
- French-speaking countries/regions such as Quebec, parts of Africa, and some Caribbean nations
- Portuguese-speaking countries (Brazil, Portugal, and others)
- Spanish-speaking countries (Spain and countries in South and Central America)
Influence local governments and policymakers
Governments and policymakers in low resource settings are overwhelmed with pressing problems, and communication disorders may not be a top priority. Global health investigators have an opportunity to increase awareness of the importance of communication, emphasizing economic impact data to demonstrate the value of treating communication disorders. Describe, for example, the cost to family and community of raising a child who is unable to communicate, as compared to a child who received treatment and can communicate. Impact data will help ensure that policymakers dedicate future funds to treat communication disorders.
Strengthen research plans by interacting with local government officials to learn about support they are able to provide. This helps unlock funding to accomplish local goals. By working with local communities, researchers can focus their efforts on what’s needed and valued in the community. Local governments and policymakers may have insight on how to address practical research challenges such as inconsistent internet access and lack of fixed addresses for residents.
WHO update on the Rehabilitation 2030 initiative
The World Health Organization (WHO) works to promote health policy and systems research (HPSR). HPSR seeks to understand and improve how societies organize themselves to accomplish collective health goals and investigates policy and implementation processes. WHO’s rehabilitation program develops leadership tools to improve organization and health goal achievement in areas including information systems, financing, service delivery, workforce, assistive technology, and strategic plan development. WHO intends to publish a global report in 2026 describing the availability and quality of rehabilitation in countries around the world. This publication will be a valuable resource for global health researchers.
Need for epidemiological data
Even the best partnerships require data from prevalence studies to support their “ask.” Funding and support often depend on the ability to show the need and describe the problem. The data itself can also lead to discoveries. For example, this workshop’s keynote speaker on global vision research identified a problem based on a pattern observed in the data. We need data that underpins pathways (how did the problem arise?) within the plan to intervene in low resource settings. Improve your chances of success by developing a plan for gathering and using data.
Identify local community partners to help you collect the best data (see list above.) To maximize data utility, describe numbers across the lifespan for both children and adults. Another challenge for collecting data is a lack of common data elements (CDEs) and standardized definitions. Infectious disease is more clear-cut for intervention (yes/no) versus mild to moderate and severe for conditions such as hearing loss or chemical senses (taste and smell) disruption. Data would be easier to collect if there’s an agreed-upon cutoff point or measurable threshold.
Mixed methods research: Experience on the ground demonstrates that a combination of practical measurements like self-report (qualitative data) and rigorous testing (quantitative data) will enable maximum data collection. Although testing is ideal, experienced global health researchers recommend giving up the perfect ideal to get some data. For example, individuals with autism who are nonverbal are difficult to test, and asking family members for information is more likely to succeed. For other situations, speaking with a person can help an investigator understand if they would participate in an intervention. Does the person think they have a hearing problem? Do they want their hearing loss to be treated?
Training and capacity building
The goal is for health interventions to be continued after a research project ends. Look to build capacity at all levels, from communities and students to researchers. The global health research team should work with partners to identify support and secure employment for team members. An experienced global health investigator suggested that the research team ask students currently in training programs in the country of interest to develop sustainable translation materials, such as translating documentation for technology that they use or translating treatment protocols or explanations of basic research questions. Global health investigators should study behavior change research literature to help them understand how to deal with challenges such as stigma and treatment adherence.
Identifying sources of support for global health research is challenging. Trainees need help to find funding and training programs. Although funding is important, not all support needs relate to funding. Successful global health teams need email lists, databases, and safe forums to share best practices and lessons learned. NIDCD should encourage global health lesson-sharing across all mission areas, in forums not restricted to a single mission area. This type of informational resource sharing is valuable because it helps to address challenges such as transporting samples across borders, understanding passport and documentation needs for specific countries, and providing a list of validated contacts for partnerships within a local community.
Participants noted that some low resource countries and areas of the U.S. lack trained audiologists or ear, nose, and throat doctors (ENTs). One outstanding research gap is data to support expanding the workforce in low resource settings. Participants noted that some trained personnel needs may be filled by building connections with organizations who identify people who can help lead research alongside local teams.
Technology to improve health care access and delivery
For the purposes of this workshop, access is defined as the opportunity to have health care needs fulfilled. Access to care is currently much better in urban areas, with major gaps in rural areas in low resource settings in both the U.S. and other countries. Technologies such as mobile devices and artificial intelligence (AI) may help address access gaps in low resource settings.
When available, the combination of mobile devices and AI offer a wide range of opportunities to improve global health interventions, including:
- Performing speech analysis
- Analyzing user-reported smell and taste data
- Adding hearing tests and options to program hearing aids
- Performing real time tracking of symptoms using chatbots
- Collecting data in low resource settings
Data sharing offers a research team a way to incentivize community participation. Creating local partnerships that support local health workers is important. The partners can share data, the shared data contributes to advances in the field, and those advances come back to support the community members they serve. Low resource settings often lack capacity to store, share, and analyze data across sites. Creating networks and partnerships that facilitate this can accelerate development of new interventions intended to improve health in underserved communities.
AI offers a way to bridge the training gap between professionals and community health care workers. Participants mentioned the use of AI for task shifting and/or task sharing between trained experts and community volunteers or community health care providers.
However, technology is not the solution to every challenge. Sometimes a simple method is better than technology. For example, a research team working in a low resource country learned that it’s best to call people to remind them to come to follow-up appointments because unlike many individuals in wealthier countries, they don’t have unlimited data plans that allow text responses from their mobile phones.
When working in low resource settings, focus on the need for affordable, validated, and easy-to-use tools that can be culturally adapted. Materials and software should be inexpensive and open-sourced. Global health teams should work with partners to address the challenges of implementing technology, including privacy issues, cost, and the need for the technology to be robust and easily fixable. Work to develop technology as part of your intervention so that it will outlast the latest cell phone or application upgrade.
Much of Sub-Saharan Africa skipped land lines phones and went straight to mobile phones. Participants discussed the importance of local partnerships to develop these leapfrogging solutions, and the need for solutions to be low cost, scalable, and durable. Participants also discussed the value of crosstalk between low resourced settings outside of the U.S. and resource-constrained settings within the U.S., since these types of technological advances are extremely beneficial in both settings.
Dissemination and implementation: Need for culturally appropriate and adaptable interventions
Dissemination and implementation (D&I) research is a field of study working to bridge the gap between the conduct of research and its real-world applications. For global health, how can we ensure that valuable research results are translated into everyday practice to improve population health? What is needed to ensure that the intervention is continued (i.e., sustainability)?
By emphasizing community engagement, global health researchers can avoid imposing Western thinking and developing something a community doesn’t want and won’t use. An ongoing gap in research practice partnerships results from failure to consider what community partners need. Consult the community you plan to involve and adapt the research approach to suit them. What is the minimum you can do to involve many local individuals to make sure that your efforts are effective?
Adaptability is key. For many people who lack paid time off, participation is decreased when screening is conducted only in a far-off clinic. Conducting screening in schools or workplaces increases access and helps the intervention fit into everyday lives. On the other hand, individuals may prefer to see the same person at a clinic each time, so that they don’t need to repeat their medical history to a new person each time. Researchers need to adapt their approaches to suit the community.
Communities provide insight critical to determining the focus and methods of research and intervention and help to identify unexpected sensitivities. Participants emphasized the importance of involving local communities, individuals with lived experience, and health care workers. In one instance, family caregivers were thrilled by the opportunity to use a mobile application to practice communication strategies at home between monthly visits with the speech language pathologists (SLPs) in a distant hospital. The SLPs, however, feared that teaching families to use these strategies threatened the SLPs’ jobs.
In addition to translating protocols and applications into the local language, global health researchers must also be aware of the local culture. As an example, a taste or smell test designed for use in the U.S. may not present tastes or smells familiar to the local population. Noting this and adapting your instrument is important to the success of the intervention.
Global health exchange is a two-way process: Local is global, global is local
What we learn from research in low resource countries outside the U.S. will also improve health care in low resource settings within the U.S.. Research teams noted that the challenges faced by individuals with a communication disorder who live in low resource settings are similar, regardless of whether the individual lives inside or outside of the U.S. Low resource settings share similar resource constraints, limited access to services, technologies, and personnel and/or demographics.
Global health researchers noted that the exchange of information goes both ways. It’s not always the highly resourced countries that have all the answers. For example, individuals in Africa are overwhelmingly enthusiastic about using hearing aids. Research teams are now trying to figure out why this is so, in the hope of encouraging hearing aid use in highly resourced countries, where many people who need hearing aids won’t use them.
Conclusion
The meeting concluded with the acknowledgement that the best global health work is collaborative and prioritizes the leveraging of partnerships. Participants agreed that future research and interventions need to be designed with the input of the communities they are intended to serve and must be sustainable, culturally appropriate, and economically viable.