PSR Latitudes All of Us
The NIH All of Us Research Program has awarded $4.6 million in initial funding to Color, a health technology company in Burlingame, CA, to establish the program’s nationwide genetic counseling resource. With the goal of speeding up health research breakthroughs, All of Us plans to sequence the genomes of 1 million participants from diverse communities across the United States. Through this funding, Color’s network of genetic counselors will help participants understand what the genomic testing results mean for their health and their families. As one of the most ambitious research programs in history, the All of Us Research Program aims to create the largest and most diverse health research resource of its kind. Participants from all parts of the country share health information over time through surveys, electronic health records and more. Some participants also are invited to contribute blood and urine samples for analysis. Researchers will be able to use this data to learn more about how biology, behavior, and environment influence health and disease, which may lead to discoveries on how to further individualize health care in the future.
Over time, the program anticipates providing several kinds of information to participants, including: information on ancestry and traits, drug-gene interactions (pharmacogenomics) and genetic findings connected with high risk of certain diseases. Genomic results from All of Us, although produced at a high quality in specially certified labs, should be confirmed by a health care provider before a participant makes any changes to their care. The pharmacogenomic information may help participants work with their health care teams more effectively to make choices about certain prescription drugs. Genetic findings tied to 59 genes associated with risk of specific diseases, like breast cancer or heart disease, for which there are established medical guidelines for treatment or prevention will also be returned to participants. To ensure that the program uses the most current knowledge in the fast-moving field of clinical genetics, All of Us is following guidance from professional organizations such as the American College of Medical Genetics and Genomics and the Clinical Pharmacogenetics Implementation Consortium.
As health-related information is made available, all participants will have access to genetic counseling services from Color. A small percentage of people will have DNA results, such as a variation in the breast cancer gene BRCA1, that may be important for treatment or screening. This information can also be valuable to their immediate family members who may share the same genetic variant. For All of Us, that could amount to tens of thousands of participants out of its eventual 1 million. Color will deliver the results to these participants in genetic counseling sessions, highlighting any important findings they may want to discuss with a health care provider.
Color will offer educational materials and telecounseling in multiple languages, as well as access to in-house licensed clinical pharmacists who can help participants have more effective conversations with their health care providers. Genetic counselors will also be able to help connect participants to health care providers who can address their particular health risks. To help guide its genetic counseling services, Color’s steering committee is led by Amy Sturm, M.S., CGC, LGC, president of the National Society of Genetic Counselors. It also includes leadership of the American Board of Genetic Counseling. The steering committee will help ensure that Color delivers top-quality genetic counseling and serves as a platform for training future generations of genetic counselors. Color has built software and digital tools that remove traditional barriers to genetic counseling and clinical genetic testing. It has conducted more than 15,000 genetic counseling sessions to help people across the country understand their DNA information. For an overview of the outputs that Color will provide, watch this 90-second YouTube video featuring Eric Dishman, Director of the NIH All of Us Research Program.
Highlights of One-Day Workshop: “Libraries as Partners in Health: an NNLM Seminar on Consumer Health”
NNLM PSR recently awarded professional development funds to six public librarians from the Pacific Southwest region to attend a special one-day event called Libraries are Partners in Health: an NNLM Consumer Health Seminar. The event took place on the National Institutes of Health (NIH) campus in Bethesda, Md. Attendees from PSR included Marta Brandes-Miesner (San Diego Public Library), Cathy Crosthwaite (Sacramento Public Library), Guadalupe Gonzales (Anaheim Public Library), Jen Lemberger (Santa Barbara Public Library), Lisa Lewis (Show Low Public Library, Show Low, AZ), and Robin Salthouse (Southeast Regional Library, Gilbert, AZ).
The morning began with an overview of NNLM, its public library initiatives, NNLM’s partnership with the NIH All of Us Research Program and the NNLM Community Engagement Network. Attendees then met with their regional representatives for a group discussion; the PSR librarians learned more about NNLM resources and services, and each one shared details about their unique programs and their library’s approach to health information services. Just before lunch, attendees took a brief tour of the National Library of Medicine.
The afternoon provided an opportunity for attendees to help develop program-in-a-box outlines based on selected National Health Observances (NHOs). Librarians chose their topic of interest and participated in a fast-paced brainstorming activity; the program ideas that were generated will be developed into actual program kits for use by any interested library.
Nearly 50 librarians attended the event from around the country, and the feedback was very positive. The following recaps from three PSR librarians provide a glimpse of the overall experience and the value received.
Marta Brandes-Miesner from San Diego Public Library provided this summary:
As the Program Development Coordinator for the San Diego Public Library, I develop systemwide programming for a diverse population, of all ages and backgrounds. Having been in this position for only six months, I have mainly focused on existing tween, teen and some elementary level STEM and STEAM collaborations. The partnerships I have been nurturing are those that provide such programs as college Prep-Test courses, computer programming and teen entrepreneurship classes. Thus, when I was approached by NNLM and the All of Us Research Program, I was not quite sure how it tied in with my work. Although the demographic I work with fluctuates between youth and some adult interests, I felt somewhat hard pressed to see a way to combine my work with some of these other initiatives.
However, when I was given the opportunity to attend the Libraries as Partners in Health: an NNLM Seminar on Consumer Health, I welcomed the chance to make more connections. Trusting my instincts that there was much more to this than I was seeing, led me on a path to the NNLM Seminar. I am so glad I received NNLM PSR professional development funding to support my attendance at this opportunity! Between the exposure to possible funding opportunities and grants for libraries, opportunities for both children and adult programming and the vast scope of what is offered within the realm of health literacy, I now have a much better view of the possibilities. Healthy cooking, homeopathy, memory care and outreach, and health literacy for new parents are among the many ideas that I hadn’t thought about incorporating into the arena of health literacy. I have discovered that I may want to program differently for different branches depending upon the health needs of their communities, information that has already been gathered through other resources, i.e. illnesses, conditions or health needs being more prevalent in certain areas of the city. I also feel as though I was made more aware of the fact that NNLM is not expecting us to act as recruiters for the All of Us Research Program and that they are great supporters of literacy and of providing access to health literacy information.
Moving forward, I have a few ideas in mind that I would like to try to tackle. I would like to try to encourage managers who are interested but may be hesitant for various reasons (such as our laborious grant writing policies) to apply for small grants to get more resources for their underserved communities. Secondly, I would like to approach a few branches with large new parent populations to host one of the What to Do When Your Child Gets Sick Story Times. Finally, I would really like to try to start a systemwide citizen science program, where families can check out Citizen Science Kits. I have a few other ideas for this citizen science theme that could tie in with monthly programming and I feel that there are many ways that health literacy and the All of Us Research Program could be a part of this. I am excited to bring these to the table and move forward with these new ideas. I am truly enthusiastic and excited about where these new ideas might take us and about the exciting knowledge and resources that we can bring to our communities!
Lisa Lewis from Show Low Public Library shared these insights:
I was very excited to receive this invitation to attend the Libraries as Partners in Health: an NNLM Seminar on Consumer Health. I am the library manager for Show Low Public Library in Show Low, AZ, but I am also the President of the Association for Rural and Small Libraries. I was looking forward to not only making connections and gaining inspiration for my public library, but also gain information that I could share with the over 1200 rural and small libraries across the country that are members of ARSL. I was not disappointed!
This seminar was full of wonderful, useful, and relevant information that I could take right back to my library and put into action. This is exactly why so many rural and small libraries love ARSL, because the ideas that are shared are extremely doable no matter how small of a library you have.
My brain was going 100 miles an hour as I tried to write down all of the wonderful programs that were being offered at libraries all over and new ideas that kept popping up in my mind as discussions were unfolding. Looking at health literacy in a whole new light and realizing the scope led me to see how libraries can contribute so much to the health and wellness of our communities.
I would love to see more extensive training on this. One day was not enough! I would love to be able to attend a 2- or 3-day workshop that would involve so much more. More networking, more program ideas, more resources, how to navigate the NNLM website which is overflowing with great resources, grant opportunities, presentations, sharing of successful programs, etc., etc., etc.
Thank you for this opportunity. I hope there will be more!!
Robin Salthouse from the Southeast Regional Library in Gilbert, Arizona offered these takeaways:
I left my day after the June NNLM Seminar on Consumer Health with a better understanding of the amazing resources we have available to us as public librarians. As an Adult Services Supervisor, I have worked with my staff to strengthen our health literacy skills over the last two years. Seeing the NIH Campus, and working with the Regional NNLM staff during the day brought into focus how this organization works to support and strengthen our understanding of the many services available to us. Our large suburban community in Gilbert, AZ, has a large population under 20 years old, but we still see many other visitors from a variety of cultures, and ages. We especially see a large upsurge in our over-55 population during the winter and into early spring as “snowbirds” enjoy our mild weather. Library staff need to know how to access reliable and valid health information both in and outside the library walls to meet the needs of a varied population.
Learning more about the All of Us Research Program strengthened my understanding of what NIH is trying to achieve by gathering biologic samples from underrepresented populations for biomedical research. The goal to engage with diverse communities, and examine environment and lifestyle to develop precision medicine and improve health literacy is important. I look forward to working with my staff, our community and NNLM to help get the word out about this vital project.
Meeting our counterparts during the regional breakout session was a great way to share ideas and understand the challenges facing our specific communities, and possibly applying their experiences to our own community. I heard how one library is using the NNLM Book Club discussions to make their community feel more comfortable asking for health resources. Our staff has selected a title from the NNLM Book Club, and plans to use the meeting as an opportunity to share the many .gov health resources. I also heard how NNLM funding has provided one of our Arizona rural libraries with the ability to loan cooking equipment like an air fryer so residents can prepare healthier meals.
The NLM tour provided some valuable information about the changes coming to the Exhibitions Connect program where NLM makes, free of charge, banner exhibitions that “explore the intersection of science, medicine, and history.” Our library has been fortunate to have three of these exhibitions in our library. We would like to continue bringing them in to educate our customers on a variety of topics. It is a great way to start a conversation about both library materials as well as online resources. I have already notified our administrator who coordinates hosting the exhibits, to join the Making Exhibition Connections listserv.
The final activity I participated in was designing a consumer health program for Healthy Aging Month. Our group, with several NNLM regional coordinators brainstormed ideas that would appeal to this demographic. Many of us felt that having one or a series of events that addressed end of life issues would serve our older adult customers. Our topics are not discussions that people typically enjoy discussing. Knowing how to arrange for long-term care, working with care providers, creating a Medical Power of Attorney or arranging burial arrangements are important. Having frank and unbiased support could prevent future devastating or costly problems.
We have found having a book display with passive activities engage our customers, and through the support of NNLM webinars and the National Health Observances, our staff has solid resources to provide library materials and resources that help start conversations about healthcare. Getting together with all the NNLM staff and seeing the NIH campus was invaluable to better understanding the government resources available to promote health literacy in our communities.
Nora Franco attended the event as well, and shared her perspective as the NNLM PSR Consumer Health Librarian:
I was very excited to participate in the Libraries as Partners in Health event and meet with librarians from across our region to discuss their engagement with the NNLM. The group shared their personal experiences and backgrounds, from holding a Master’s in Public Health, to serving as the President of the Association of Small and Rural Libraries, to advocating for their LatinX community. The intimate setting allowed each of us to learn about ways to incorporate health information into services and programs and how the PSR can support them.
The second half of the seminar found participants separated into new groups for a brainstorming session titled “Designing Your Consumer Health Programs with the NNLM.” The group I worked with focused on creating self-care kits, which brought up several questions and ideas for the table to consider. Group members proposed ideas for LGBTQIA+ teens and healthy relationships, older adults, and language resources for healthcare professionals about gender, pronouns, and LGBTQIA+ sexual health. Perhaps the most significant piece of this activity was the acknowledgment of how some of our privileges allow us to define self-care, such as being cis-gendered, being white, and living in a financially stable household. Considering how our communities survive in order to live safe and healthy lives is an important piece to providing access to health information, and I was glad we were able to start this conversation.
In summary, this event provided NNLM PSR a great opportunity to meet and connect with creative, dedicated librarians who are passionate about improving health literacy in their communities. For more information about this topic or any of our other programs, please don’t hesitate to contact us. We look forward to supporting public libraries in our region with resources, training, and assistance for health-related programs.