Q: Your reputation for passion about engaging and empowering people precedes you. Can you please describe your role at the All of Us Research Program?
A: I was an inaugural member of the All of Us Research Program Advisory Panel, so it felt like a natural transition to step into my current role as chief engagement officer. All of Us has a goal to enroll and retain one million or more volunteers in this landmark effort to advance innovative health research, which may lead to more precise treatments and prevention strategies. My primary objective is to forge partnerships with research participants, health care professionals, and national and community-based organizations to raise awareness of the program and engage members, with a special focus on populations that have been historically underrepresented in research. Engaging and empowering people is something about which I am extremely passionate, and I am fortunate to have the opportunity to continue my work in this regard in my current role with the All of Us Research Program.
As someone who has unfortunately experienced, both as a physician and a patient, the damaging effects that can occur when medications or therapy designed for the “average” patient are prescribed, I am excited about the promise of more specific and effective medical treatments and therapeutic interventions, as well as the opportunity to gain a better understanding about prevention strategies.
Q: Why is it so important to include communities that have historically been underrepresented in research?
A: Most studies and clinical trials have been conducted with the average white male participant. All of Us aims to be different. We want our program participants to reflect the rich diversity of the United States. We know that a truly effective pool of participants won’t all physically look the same; it will include people from all different backgrounds and walks of life. The more data we gather, the more we’ll know about what makes people unique, which may, in turn, pave the way for more customized health care approaches.
Minorities make up 38 percent of the US population. This number is expected to rise to more than 50 percent in the coming years. And now think about this statistic: the African American population is the second largest ethnic/racial minority group in the U.S., making up 13.3 percent of the total U.S. population (46.3 million people), yet African Americans contribute to only five percent of clinical trials nationwide. This is despite the fact that African Americans, for decades, continue to have the highest incidence, prevalence, and mortality rates from chronic and often preventable diseases such as heart disease, diabetes, obesity, hypertension, mental health, and HIV/AIDS.
We do not fully understand why these disease rates are so high in many underrepresented communities, and part of why we don’t understand is because we don’t have enough representation of all individuals in the research that will lead us to answers.
Because medicine today is still highly imprecise and many research cohorts are still lacking in diversity, we don’t always know what exact medicine will work best for prevention or treatment for each individual patient. There are many new drugs being developed to successfully treat various cancers and other life-threatening illnesses but more often than not, their effectiveness has not yet been established in African Americans or others because they are not part of the research studies. We must change that, and All of Us is a great way to start.
As someone who has unfortunately experienced, both as a physician and a patient, the damaging effects that can occur when medications or therapy designed for the “average” patient are prescribed, I am excited about the promise of more specific and effective medical treatments and therapeutic interventions, as well as the opportunity to gain a better understanding about prevention strategies.
Q: You recently teamed with the National Library of Medicine to reach communities through local libraries to raise awareness about the All of Us program. What are some of your specific engagement goals and plans for this pilot program?
A: We’re excited to have the National Library of Medicine join our amazing group of community engagement partners and other awardees to help raise awareness of the All of Us Research Program. The main reason for this partnership is to reach participants where they are. For many people in our country, including those with limited internet access, one of those places is their local library.
A few of the specific goals and plans include:
- Increasing the capacity of public library staff to improve health literacy;
- Equipping public libraries with information about the All of Us Research Program to share with local communities;
- Highlighting public libraries as a technology resource, where participants can engage with the program, particularly those in underserved communities affected by the digital divide; and
- Establishing an online platform for education and training about All of Us and precision medicine, with resources for members of the public, health professionals, librarians and researchers.
Q: The history of this field is not free of its mistakes. In fact, there have been some past transgressions in biomedical research and large-scale studies. What lessons were learned, and how will All of Us be different?
A: We recognize that many transgressions have occurred in research over the years, ranging from Henrietta Lacks to the Tuskegee Syphilis Study. These egregious abuses have understandably led to many groups, especially minority groups, being hesitant or skeptical when considering whether or not to share their medical information or participate in research.
While none of us can wave a magic wand to erase the past, our job is to genuinely, and with overwhelming respect and empathy, acknowledge the legitimacy, fear, concerns, and mistrust these unfortunate historic actions and realities instill in many of the communities we are attempting to engage. We hope to make it abundantly clear – both in our words and our actions – that the All of Us Research Program is focused on authentically engaging participants in a way that respects their interests, values, and needs.
We must also make sure that potential participants understand that much needed changes and protections, many led by the National Institutes of Health, such as the Belmont Report (a statement of basic, ethical principles), have been put in place to protect research participants from past abuses. Our program also has many safeguards built in to protect participant data and privacy, through the Precision Medicine Initiative (PMI) Privacy and Trust Principles and the PMI Data Security Policy and Framework, both of which are foundational elements of our program.
And most importantly, we must make it absolutely clear that our mission is to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment and care, not just for some us, but for all of us!
The Precision Medicine World Conference (PMWC), in its 17th installment, will take place in the Santa Clara Convention Center (Silicon Valley) on January 21-24, 2020. The program will traverse innovative technologies, thriving initiatives, and clinical case studies that enable the translation of precision medicine into direct improvements in health care. Conference attendees will have an opportunity to learn first-hand about the latest developments and advancements in precision medicine and cutting-edge new strategies and solutions that are changing how patients are treated.
See 2019 Agenda highlights:
- Five tracks will showcase sessions on the latest advancements in precision medicine which include, but are not limited to:
- AI & Data Science Showcase
- Clinical & Research Tools Showcase
- Clinical Dx Showcase
- Creating Clinical Value with Liquid Biopsy ctDNA, etc.
- Digital Health/Health and Wellness
- Digital Phenotyping
- Diversity in Precision Medicine
- Drug Development (PPPs)
- Early Days of Life Sequencing
- Emerging Technologies in PM
- Emerging Therapeutic Showcase
- FDA Efforts to Accelerate PM
- Gene Editing
- Genomic Profiling Showcase
- Immunotherapy Sessions & Showcase
- Implementation into Health Care Delivery
- Large Scale Bio-data Resources to Support Drug Development (PPPs)
- Microbial Profiling Showcase
- Microbiome
- Neoantigens
- Next-Gen. Workforce of PM
- Non-Clinical Services Showcase
- Pharmacogenomics
- Point-of Care Dx Platform
- Precision Public Health
- Rare Disease Diagnosis
- Resilience
- Robust Clinical Decision Support Tools
- Wellness and Aging Showcase
See 2019 Agenda highlights:
- Five tracks will showcase sessions on the latest advancements in precision medicine which include, but are not limited to:
- AI & Data Science Showcase
- Clinical & Research Tools Showcase
- Clinical Dx Showcase
- Creating Clinical Value with Liquid Biopsy ctDNA, etc.
- Digital Health/Health and Wellness
- Digital Phenotyping
- Diversity in Precision Medicine
- Drug Development (PPPs)
- Early Days of Life Sequencing
- Emerging Technologies in PM
- Emerging Therapeutic Showcase
- FDA Efforts to Accelerate PM
- Gene Editing / CRISPR
- Genomic Profiling Showcase
- Immunotherapy Sessions & Showcase
- Implementation into Health Care Delivery
- Large Scale Bio-data Resources to Support Drug Development (PPPs)
- Microbial Profiling Showcase
- Microbiome
- Neoantigens
- Next-Gen. Workforce of PM
- Non-Clinical Services Showcase
- Pharmacogenomics
- Point-of Care Dx Platform
- Precision Public Health
- Rare Disease Diagnosis
- Resilience
- Robust Clinical Decision Support Tools
- Wellness and Aging Showcase
- A lineup of 450+ highly regarded speakers featuring pioneering researchers and authorities across the healthcare and biotechnology sectors
- Luminary and Pioneer Awards, honoring individuals who contributed, and continue to contribute, to the field of Precision Medicine
- 2000+ multidisciplinary attendees, from across the entire spectrum of healthcare, representing different types of companies, technologies, and medical centers with leadership roles in precision medicine
