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Why We Need Diversity in Research — And How You Can Help

By May 13, 2018Blog Post, News

By Emily Ortman, SWHR Communications Director

Biases in medical research put the health of women at risk. For 28 years, SWHR has fought to overcome these challenges and make women’s health a national priority.

One major aspect of SWHR’s legacy is our critical advocacy efforts that led to the consistent inclusion of women and minorities in medical research. It wasn’t until 1993 that the National Institutes of Health (NIH) mandated that women and minorities be included in government-funded research and that the Food and Drug Administration (FDA) changed its policies to require the inclusion of women in efficacy studies and the analysis of data on sex differences.

Despite these and other policy changes over the years, we are still behind in understanding sex differences in health and disease — to the detriment of women — and we still need to improve the recruitment and inclusion of women and other underrepresented groups in research. Without the inclusion of diverse groups, we cannot discover how certain diseases or treatments affect people differently and this slows scientific progress.

During National Women’s Health Week, you can play a role in advancing this cause and creating a healthier future for generations to come. How? By sharing a bit of your time and information with the research community.

The NIH recently launched two projects that aim to help close knowledge gaps in research by collecting information from underrepresented groups: PregSource, a crowdsourcing research project focused on pregnant women, and All of Us, a historic effort to gather data from 1 million people in the United States.

Pregnant women are still commonly excluded from clinical research — and it’s easy to understand why. The scientific community has struggled with trying to find the balance between protecting pregnant women and their fetuses from unknown consequences and discovering valuable knowledge that could benefit them both.

PregSource enables women to share information about their pregnancy and overall health through a free, confidential website. Pregnant women can use the website to:

  • Track their weight, mood, sleep, diet, and physical activity
  • Share health updates with their health care providers
  • Compare their experiences with those of other pregnant women across the nation
  • Get expert health information from trusted sources

The project is not testing any medical treatments; it’s simply collecting information about pregnancy. But this information — gathered directly from pregnant women — will be incredibly valuable for helping researchers to better understand the day-to-day aspects of pregnancy and to develop strategies for improving obstetric care.

The goal of the All of Us project, launched on May 6, is simple: to speed up health research and medical breakthroughs. To do this, the project seeks to recruit 1 million individuals to provide health information that researchers can use to better understand how differences in people’s environments, lifestyle, and biological makeup affect health. The more researchers learn about our individual differences, the more tailored health care can become.

A key part of the project’s mission is to ensure that its participants reflect the rich diversity of our country and that historically underrepresented populations are included in research. Diversity is biomedical research benefits all of us by spurring scientific advancement and medical discovery.

The success of both of these programs hinges on a common factor: active volunteers. Participants must choose to take part in these projects and willingly share their information to benefit the future of human health. (Participants’ personal information, such as name, address, and phone number, will remain confidential and secure.)

During this National Women’s Health Week, consider taking part in research projects like PregSource and All of Us, and learn more about your own health while also contributing to the health of future generations.

 

PregSource, Precision Medicine Initiative, PMI, All of Us, the All of Us logo, and “The Future of Health Begins With You” are service marks of the U.S. Department of Health and Human Services.

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