Community Corner
Gift the Future of Health This Holiday Season by Joining All of Us
Empower health research by joining the All of Us Research Program and help make the world a healthier place to live
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Taking part in health research is a gift we can give to our community and our children. Our legacy can be better health for future generations. This holiday season, give the gift of research by joining the All of Us Research Program and help make the world a healthier place to live.
All of Us has a simple mission: to help advance research so we can learn more about what makes us sick and what keeps us healthy. Participants are from different races and ethnicities, age groups, and regions of the country. They are also diverse in gender identity, sexual orientation and health status.
Even with the best medicine we have, treatments meant for the “average” patient may not work well for some individuals. Healthcare providers may find it difficult to coordinate care among specialists or to access all of a patient’s health information. Researchers may spend lots of time and resources finding new participants for every study. But All of Us is working to improve and make health care more equitable through research. Unlike research studies that focus on one disease or group of people, All of Us is building a diverse resource that can inform thousands of studies on a variety of health conditions.
All of Us, which is part of the National Institutes of Health (NIH), is inviting one million people across the United States to help build one of the largest and most diverse health data resources in history. This includes groups who have been left out of health research in the past.
“Health research has gender, racial and age gaps. But we’re trying to change that,” says Cheryl McCloud, Community Engagement and Communications Manager for All of Us at Boston Medical Center. “With community support, we hope to close those gaps so everyone may benefit from a more personalized approach to healthcare someday.”
Inclusion is a core value of All of Us, and participation is open to all. Participants are from different races and ethnicities, age groups, and regions of the country. Over 45% of participants represent diverse racial and ethnic groups, and over 80% are from groups previously underrepresented in biomedical research, along the lines of sex, gender identity, age, income, education, geographic location and other factors. Many of these groups have been left out of health research in the past. As a result, the medical community knows less about their health and ways to provide them with the best care. All of Us hopes to change that and pave the way for a healthier future for all.
All of Us understands there is a lack of trust that exists among groups who have been left out of health research. The program is trying to address that through their core values – guiding principles that include diversity, transparency and accessibility.
All of Us has a sincere mission to bring both participants and researchers together in this effort. For example, many of the researchers using the data are participants themselves. Diverse researchers can bring their own personal experience in their approach to conducting research. This can help researchers better understand the cultural considerations of people under-represented in research when designing research questions and looking at the data. In this way, they can work with the community, rather than simply conducting research on them. This demonstrates another core value: that participants are true partners in the process.
Participants are Partners
The All of Us team in New England follows the philosophy that working with the community means giving back as much as it means asking for their participation. All of Us New England is committed to delivering a transparent and collaborative experience for potential and current participants.
“Our approach is to make sure that the voices of our communities are being heard and responded to when we approach them about joining the program," says McCloud. "We ask for feedback on the marketing materials we use, the organizations we engage with and more. They contribute to our newsletters, and we ask for their ideas about topics to cover. We engage with them on social media, and we send regular emails and texts. But our best collaborations happen when we participate in community events and meet with our participants face-to-face.”
Community Representation and Collaboration
The New England team recognizes that, like the communities themselves, the lived experiences of groups all over Boston are diverse and unique. "The Boston community is not one-size-fits-all," says McCloud. "Our research program staff and investigators, our community partners, and our Community Advisory Panel members represent diverse communities from around the Boston area. Their voices help us improve their experiences with this program – and in turn, helps us move towards making the world a healthier place to live."
All of Us New England works closely with community organizations to ensure representation by groups who have not previously been a part of health research. Local partners include the American Cancer Society, the Lupus Foundation of America, Delta Sigma Theta’s Delta Research and Education Foundation, Zeta Phi Beta Sorority, Incorporated, Delta Omicron Zeta Chapter of Boston, and the Veronica Robles Cultural Center.
As part of their collaborative efforts, the New England team recently launched the ‘Conversations with All of Us’ podcast, which covers topics such as diversity in health research, topics currently being discussed in health, and research being conducted using All of Us data. Podcast guests include community members as well as experts in the field who give accessible advice and guidance.
Benefits of Joining All of Us
One of the goals of All of Us is to return information back to participants over time. For example, participants can learn about their DNA by providing blood or saliva samples. The program will give back DNA results at no cost.
This information may include:
- Genetic ancestry (where your family might have lived hundreds of years ago)
- Genetic traits, such as why you might love or hate cilantro
- Whether you may have a higher risk for certain health conditions
- How your body might react to certain medications
There is no cost to participate other than some of your time. Most people will spend no more than a few hours a year taking part in the program's activities. All participants will receive a $25 gift card after they complete the initial steps to join, which include: creating an account, giving consent, agreeing to share electronic health records, deciding whether they want information about their DNA, answering health surveys, having their physical measurements taken (height, weight, blood pressure, etc), and giving blood and urine samples.
Taking Part in Health Research is a Gift we can Give to our Community and our Children
Just 5 years into the effort, important health research is already taking place. Several studies have been conducted by local researchers from institutions such as Brigham and Women’s Hospital, Massachusetts General Hospital, and Boston Medical Center that pertain to many groups in Boston. For example, studies have been conducted on hypertension prevalence in diverse populations, the pandemic’s effects on physical and mental health, and an exploration of reproductive health issues that disproportionately affect Black women.
Anyone can visit the All of Us Research Projects Directory. There, you can browse the whole list of active research projects, or search by keyword to find out what research is happening around specific communities or health conditions. There are over 8,000 active research projects already underway.
In October of 2023, All of Us celebrated the achievement of enrolling half a million participants. And earlier this year, the program significantly expanded its data to include nearly 250,000 whole genome sequences for broad research use.
Give the Gift of Health Research by Joining All of Us
“Being a participant feels like helping scientists draw maps for a treasure hunt with real treasure at the end that will benefit all of us,” says Pamela Loring, an All of Us participant and member of the All of Us New England Community Advisory Panel. “Participating, even by answering a survey, doesn't feel like work. I feel like I'm contributing to something meaningful, and that's a gift.”
To join All of Us in New England, visit JoinAllofUs.org/Giving2023 and click “Join Now” to start your journey. For questions or more information about the program, please call (617) 768-8300. You can also follow All of Us New England on Facebook, Twitter and Instagram.
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