Native American Heritage Month: Respecting and Leveraging People, Communities, and Data to Advance Health Research
By Dr. Janine A. Clayton and Dr. Vivian Ota Wang
Native American Heritage Month
November is Native American Heritage Month. Although great strides in the health of American Indian and Alaska Native (AI/AN) people have been made, disparities persist. The NIH Tribal Health Research Office (THRO) is dedicated to building research partnerships for healthy Tribal Nations. THRO strives to acknowledge the enduring hope, resiliency, wisdom, and strengths of AI/AN communities across the country.
Compared to other populations, AI/AN people experience disproportionately higher rates and burdens of many preventable diseases and chronic health conditions including hypertension, diabetes, obesity, cancer, and COVID-19. According to the Centers for Disease Control and Prevention, AI/AN women experience more maternal health complications during pregnancy and childbirth than White women.
During the COVID-19 pandemic, AI/AN people living on reservations were at increased risk of infection and mortality because of higher rates of poverty, communal living conditions, and limited access to medical facilities, despite higher vaccination rates. The article “Impact of the COVID-19 Pandemic on Research with American Indian and Alaska Native Populations” describes how AI/AN people particularly experienced the regressive effects of increased caretaker and education responsibilities, unemployment, lack of available medical and psychological services, and family and community losses due to the disproportionate number of deaths in their communities.
As part of its response to COVID-19, the Rapid Acceleration of Diagnostics (RADx®) initiative held a rapid-response NIH Tribal Consultation on COVID-19 in May 2020 to seek meaningful and timely input from Tribal Nations to ensure that NIH provided research to Tribal Nations that was not only time-sensitive but also respectful of their sovereignty and applicable customs, culture, and laws. To address input about the historic experiences and harms related to oversight and sharing of AI/AN research data, the Office of Data Science Strategy and the National Institute on Minority Health and Health Disparities held a second RADx NIH Tribal Consultation in July 2021 that focused on the creation of a RADx Tribal Data Repository with Tribal sovereignty and governance.
Further, in fall 2020, the National Center for Advancing Translational Sciences (NCATS) held Tribal Consultations to solicit input and recommendations for the National COVID Cohort Collaborative (N3C). N3C is a large, diverse clinical database that contains patient medical record information from more than 60 health care institutions across the country to study the progression of COVID-19, identify risk and protective factors, search for effective treatments, understand the long-term disease effects, and determine how best to care for those with the disease. N3C data provide valuable insights into specific health outcomes for AI/AN women, including pregnancy and sex differences in severe outcomes in patients with COVID-19.
Along with other NIH institutes, centers, and offices (ICOs), ORWH is supporting the funding opportunities Research to Improve Native American Health (R21 Clinical Trials Optional) and Intervention Research to Improve Native American Health (R01 Clinical Trial Optional). Funded projects will conduct culturally informed research into health promotion, disease prevention, or treatment services to improve the health of more than 5 million AI/AN people living in the United States. We look forward to the findings that these funding opportunities produce.
HIV and Women Signature Program
Together with the Office of AIDS Research (OAR), ORWH has released a Request for Information (RFI) on Research Opportunities Related to HIV and Women’s Health. This RFI aims to identify gaps and priorities at the intersection of HIV and women’s health and to inform future programs and research efforts. Responses are due by December 31, 2023, and OAR and ORWH look forward to supporting future research on HIV and women’s health. Please visit the HIV and Women OAR webpage to learn more about HIV and Women. In addition, please read the March 2023 blog co-authored with Maureen M. Goodenow, Ph.D., former director of OAR, which describes the launch of the OAR-ORWH partnership.
National Academy of Medicine Annual Meeting
As part of its Annual Meeting, the National Academy of Medicine (NAM) hosted a symposium on Women’s Health: From Cells to Society on October 9, 2023. I (Dr. Clayton) participated in a robust panel presentation and discussion titled “Sex and Gender Differences: Understanding the Biological and Social Determinants of Women’s Health.”
Monica M. Bertagnolli, M.D., the newly appointed NIH director, presented during the President’s Forum on “Revolutionizing Women’s Health: Envisioning a New Era of Progress, Policy, and Research.” Dr. Bertagnolli discussed the advancement of women in leadership and emphasized that “biomedical research must accelerate efforts to achieve inclusion at all levels, not just by counting numbers, but correcting knowledge gaps, supporting those in research with unfair challenges so that their talents can be realized, and ensuring that our research results apply to everyone.”
In addition, the 7th Annual Vivian W. Pinn Symposium keynote speaker, JoAnn E. Manson, M.D., M.P.H., Dr.P.H., MACP (Harvard Medical School), participated on the “Health Across the Lifespan: Achieving Healthy Longevity for Women” panel and noted that “reproductive and pregnancy-related factors are a window into a woman’s future cardiometabolic health.” Please visit the NAM website to watch the videos and read the transcripts.
White House Establishes First-Ever Women’s Health Research Initiative
On November 13, 2023, President Joe Biden and First Lady Jill Biden announced the first-ever White House Initiative on Women’s Health Research. The Initiative emphasizes women’s health research across government agencies and recognizes the importance of prioritizing women’s health research at the presidential level. “The Initiative is committed to galvanizing the Federal government and the private and philanthropic sectors to spur innovation, unleash transformative investment to close research gaps, and improve women’s health.”
ORWH is poised to play a key role and to work closely with NIH ICO colleagues to set the agenda and map the future of research on women’s health. We look forward to collaborating with the Chair of the White House Initiative on Women’s Health Research, Carolyn M. Mazure, Ph.D., Yale University, a former Advisory Committee on Research on Women’s Health member, and with Jennifer Klein, the Director of the White House Gender Policy Council. The Initiative welcomes written comments and input, which can be directed to WomensHealthResearch@who.eop.gov (PDF or Word attachments only).
Women’s Health Events: Past and Upcoming
On November 1, the National Institute on Aging (NIA) Division of Aging Biology hosted “The Long-Term Effects of Pregnancy on Aging Workshop” in collaboration with ORWH and the Eunice Kennedy Shriver National Institute on Child Health and Human Development. Please visit the NIA website for more information.
The Specialized Centers of Research Excellence (SCORE) on Sex Differences 2023 Annual Meeting was held on November 3. Please visit the NIH VideoCast page to watch the keynote speech from Claire Pomeroy, M.D., M.B.A., president and CEO of the Albert and Mary Lasker Foundation, titled “Core Values and Your Research Career: Health Equity and the Social Determinants of Health.”
On November 30, the NIH Sex and Gender in Health and Disease (SGHD) Scientific Interest Group (SIG) will host a webinar on Sex as a Biological Variable (SABV) Policy and Sex-Inclusive Research: Making Progress, Taking Stock, and Visioning the Future. I (Dr. Clayton) will deliver opening remarks. The webinar speakers will include Natasha A. Karp, Ph.D., AstraZeneca, Shirin Heidari, Ph.D., Graduate Institute of International and Development Studies, and Barbara Stranger, Ph.D., Northwestern University. Please register to join the webinar.
Finally, the Building Interdisciplinary Research Careers in Women’s Health (BIRCWH) 2023 Annual Meeting will occur on December 5. The featured speakers include Karen M. Freund, M.D., M.P.H., Tufts Medical Center and Lindsey A. Criswell, M.D., M.P.H., D.Sc., director, National Institute of Arthritis and Musculoskeletal and Skin Diseases. Dr. Freund will deliver the 2023 Ruth L. Kirschstein Memorial Lecture, and Dr. Criswell will deliver the 2023 Legacy of Leadership Lecture. To view the videocasts of these presentations, please visit the ORWH website.
Bringing 2023 to a Close
This Director’s Message will be the final blog post for 2023. We sincerely thank everyone at ORWH and beyond who work tirelessly to use innovative strategies to advance the health of women and women’s health research. We look forward to continuing our work together in 2024, and we hope everyone has a safe and healthy start to the new year!