The National Institutes of Health increasingly emphasizes the need for research studies to be broadly inclusive of all types of people in the population.

Why is this policy important and how do you accomplish it in your research? Those questions will be the focus of conversation at this program, Hidden Populations: Bringing Everyone to Research.

This program you will hear from researchers and representatives who work with specific "hidden populations:" persons over 65, drug users, and Appalachian residents. The strategies used to reach these populations for research are broadly applicable. If you are a faculty researcher, a graduate student, or a research staff person, you can learn from these presentations how to design more inclusive research studies and how your research can benefit from such inclusiveness.

Topic: Hidden Populations: Bringing Everyone to Research

Presenters: Pam Salsberry, PhD, RN, FAAN, College of Public Health and Jeff Grever, MPH, Center for Clinical and Translational Science

Topic: Addressing the Lifecourse Issue with Hard to Reach Populations

Presenters: Mary Beth Happ, PhD, RN, FAAN, FGSA, College of Nursing

Topic: Recruiting, Enrolling and Retaining Older Adults with Dementia and Their Caregivers in Research

Presenters: Karen Rose, PhD, RN, FGSA, FAAN, Professor & Director, Center for Healthy Aging, Self-Management and Complex Care, College of Nursing

Topic: Understanding and improving opioid use and opioid-related harms in Appalachia

Presenters: Kathryn Lancaster, PhD, MPH, College of Public Health

Resources: 

1. NIH statements and resources addressing the inclusion of diverse populations in research, including the Inclusion of Women and Minorities policy and the Inclusion Across the Lifespan policy  https://grants.nih.gov/policy/inclusion.htm 

2. CCTS Recruitment & Retention of Research Participants Services:https://ccts.osu.edu/content/participate-research

3. SPEACS-2 training program https://go.osu.edu/speacs 

Learners will be able to apply cognitive, sensory, and motor assessment findings to select appropriate strategies and low tech assistive communication tools to facilitate comprehension and expression of messages among nonvocal patients.

4. Full Inclusion of Persons with Disabilities in Research (FIND) Lab, Case Western Reserve University. Shirley Moore, Ann Williams https://case.edu/nursing/research/centers-excellence/findlab 

Collaboration with Cleveland Sight Center and the Cleveland Hearing and Speech Center to develop an iPad app that allows researchers to load any research survey tool into a program that produces a universal designed survey (can be used with research participants who are blind or deaf in an iPad format).

5. The NIH Toolbox® is a comprehensive set of neuro-behavioral measurements that quickly assess cognitive, emotional, sensory, and motor functions from the convenience of an iPad.

https://www.healthmeasures.net/explore-measurement-systems/nih-toolbox 

Articles

1. Victorson D, Manly J, Wallner-Allen K, et al. Using the NIH Toolbox in special populations: considerations for assessment of pediatric, geriatric, culturally diverse, non-English-speaking, and disabled individuals. Neurology 2013;80:S13-9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662333/ 

2. Williams AS, Moore SM. Universal design of research: inclusion of persons with disabilities in mainstream biomedical studies. Sci Transl Med 2011;3:1-10. https://pubmed.ncbi.nlm.nih.gov/21562227/ 

3. Williams AS. A focus group study of accessibility and related psychosocial issues in diabetes education for people with visual impairment. The Diabetes Educator 2002;28:999-1008.
https://pubmed.ncbi.nlm.nih.gov/12526640/ 

4. Williams AS. Making diabetes education accessible for people with visual impairment. The Diabetes Educator 2009;35:612-21.
https://pubmed.ncbi.nlm.nih.gov/19417119/ 

The goal of this program is to help researchers become comfortable reaching out to adolescents for projects that would benefit from including participants between the ages 10 and 18 in addition to adults or young children. The inclusion of people across the lifespan, from young to old, is an important initiative at the NIH (see https://www.nia.nih.gov/Inclusion-Across-Lifespan-2020 .)

There are special concerns about including adolescent populations in your clinical study or other research project, and that extra complication can discourage investigators from reaching out to these populations. Speakers from Nationwide Children's Hospital and Ohio State address the unique developmental issues of the adolescent population, appropriate measurement instruments, ethical challenges and special regulatory requirements.

In presentations and panel discussion, you will hear from researchers who are experienced working with adolescents. Their insights will clear a path for you to include adolescents in your research.

Resources:

Agenda

Guidelines for Adolescent Health Research

Society for Adolescent Medicine Health Research Guidelines

From strategies for putting together the best research staff to getting the budget right, to getting the most out of collaborations, this program will help to set you up for research success. Experienced research leaders from staff to faculty will present on: Hiring Your Research Team: Tips for Success; Managing Your Research Budget; Managing Your Research Collaborations.