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!

Interview with Honoree Mary Relling, PMWC Duke 2018 Luminary Honoree

Q: Why is preemptive pharmacogenetics testing important in the context of personalized medicine?

A: We estimated that pharmacogenetic test results can impact the use of nearly 100 drugs, accounting for up to 18% of current prescriptions. Therefore, having pharmacogenetic test results already “in hand” at the time of prescribing will be more convenient for patients and physicians compared to performing as needed, one gene-at-a-time testing, which will be slower and more expensive.

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Interview with Eric Perakslis from Datavant

Q: What need is Datavant addressing?

A: While the volume of health data grows precipitously year over year, our ability to make use of that data is not keeping pace. There are many aspects to the inherent challenges and opportunities of this data explosion but of particular concern is the increased fragmentation.

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All of Us Research Program Aims to Create Diverse Research Data Resource

In the age of big DNA data, it is important to remember that accumulating large amounts of data is not enough. Equally important is keeping the DNA data that participants provide as diverse as possible to allow us to generate answers to questions about how different variables impact people differently.

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Interview with Philip Parks from Exact Sciences Corporation

Q: What need is Exact Sciences Corporation addressing?

A: Exact Sciences’ mission is to improve patient outcomes through the early detection of cancer. We are especially focused on developing highly accurate, minimally invasive screening tests and technologies.

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Interview with Mike Nall from Biocept, Inc.

Q: What need is Biocept, Inc addressing?

A: Physicians are not receiving all the genomic information needed for precision medicine therapeutic decision making so some patients potentially miss out on targeted therapies that could save or extend their lives.

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Interview with Michael Pellini from Section 32

Q: How do you select startup companies you invest in? What are values you are looking for both in the companies and the leadership teams?

A: This answer is more of a philosophical one rather than a simple listing of ingredients, even though the latter might be easier or more reassuring for an entrepreneur to digest.

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Jeff Gordon, The “Father of the Microbiome” On The Promises and Challenges of the Microbiome in Precision Medicine

The microbiome significantly impacts human health, playing a crucial role in maintaining health and preventing disease. It influences endocrinology, physiology, and even neurology, altering the outcome of many different disease states, and it has been shown to augment drug responses and tolerance. In parallel to your normal microbiota, headlining pathogens are grabbing our attention, as we seem to face a major epidemic or viral outbreak of some sort each year, whether it is Zika, Ebola, or the Coronavirus MERS-CoV.

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Q&A with Jeff Balser, Dean of Vanderbilt University School of Medicine, President & CEO VUMC

Q: What is your vision for personalized care?

A: While the term “personalized care” has become popular contemporary with the maturation of genomic medicine, it is clear that the entire context of care – including social, behavioral, and environmental factors – drives the outcomes we are hoping to achieve.

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Q&A with All of Us Research Program Deputy Director Stephanie Devaney, Ph.D.

Q1a: You are the Deputy Director of the All of Us Research Program. What is your role as the deputy director and why is this initiative so important?

A: As deputy director, my primary role is to work closely with the All of Us Director Eric Dishman in guiding the program from concept to reality. Our vision is to enable a healthier future for all of us by building a data resource that scientists can use to speed up research and the development of individualized approaches to prevention and treatment.

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Interview with Honoree Jeffrey Gordon, PMWC 2018 Duke Luminary Honoree

Q: Why is the microbiome so important in the context of precision medicine?

A: We can’t ignore a part of our body that is composed of tens and tens of trillions cells, albeit microbial – a population that collectively contains at least two orders of magnitude more genes than in our Homo sapiens genome, endows us with attributes and capabilities that we have not had to evolve on our own, and contributes to our intra- and interpersonal biological variations as well as health status.

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Call to the Health Care Community to Execute on Next Steps for a Wider Adoption and Implementation of Precision Medicine

The recent Facebook data breach, genetic data sleuthing by the FBI that led to the Golden State Killer, and the soon-to-be-implemented European General Data Protection Regulation (GDPR), has put data privacy and security front and center.

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Data Privacy, the Security, And Ownership

The recent Facebook data breach, genetic data sleuthing by the FBI that led to the Golden State Killer, and the soon-to-be-implemented European General Data Protection Regulation (GDPR), has put data privacy and security front and center.

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Q&A with Jason Crites from IBM & Piers Nash from Health2047 Speaking at PMWC 2018 Michigan in June

Q: What need is IBM and Health2047 addressing in the healthcare/life sciences sector?

Jason (IBM): The industry is undergoing a significant transformation as reimbursement shifts from fee-for-service to value-based outcomes in the face of regulatory uncertainty.

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Dr. Francis Collins of NIH at June PMWC Michigan- Launch of Nationwide Participation Enrollment!

This past Sunday—May 6, 2018—the program reached a major milestone with the start of the nationwide participation enrollment! The All of Us Research Program, part of the Precision Medicine Initiative that was famously announced by President Barack Obama at the 2015 State of the Union address, aims to enroll a total of 1 million Americans.

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Meet Dr. Gil Omenn, Director of the University of Michigan Center for Computational Medicine & Bioinformatics on June 6th at PMWC 2018 Michigan

Q: What are the objectives of the Human Proteome Project and what are some of the recent breakthrough discoveries?

The HUPO Human Proteome Project has two overarching goals: (1) to complete the protein parts list, with at least one protein product from each of the ~20,000 protein-coding genes along with sequence variants, splice variants, and post-translational modifications, with characterization of their functions;…

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University of Michigan

The Precision Medicine World Conference (PMWC), held annually in Silicon Valley, is coming back to North Carolina for its 2nd Conference back at Duke University on September 24-25, 2018.

PMWC 2018 Duke, the 15th installment of the conference, will spotlight the explosion of biomedical technologies, driving initiatives that enable the translation of precision medicine into direct improvements in health care.

 

  • Track 1 will showcase sessions on the latest advancements in precision medicine which include, but are not limited to:
    • Digital Phenotyping
    • Precision Public Health
    • Pharmacogenomics
    • The Microbiome
    • Rare Disease Diagnosis
    • Digital Health/Health and Wellness
    • Early Days of Life Sequencing
    • Diversity in Precision Medicine
    • Resilience
    • AI and Machine Learning
    • Gene Editing
    • Large Scale Bio-data Resources to Support Drug Development (PPPs)
    • Point-of Care Dx Platform
    • FDA Efforts to Accelerate PM
    • Implementation into Health Care Delivery
    • Next Gen. Workforce of PM
    • Immunotherapy
    • Robust Clinical Decision Support Tools
    • Creating Clinical Value with Liquid Biopsy ctDNA, etc.
    • Neoantigens
    • Emerging Technologies In PM

The Precision Medicine World Conference (PMWC), held annually in Silicon Valley, is coming back to North Carolina for its 2nd Conference back at Duke University on September 24-25, 2018.

PMWC 2018 Duke, the 15th installment of the conference, will spotlight the explosion of biomedical technologies, driving initiatives that enable the translation of precision medicine into direct improvements in health care.

 

    • Track 1 will showcase sessions on the latest advancements in precision medicine which include, but are not limited to:
      • Digital Phenotyping
      • Precision Public Health
      • Pharmacogenomics
      • The Microbiome
      • Rare Disease Diagnosis
      • Digital Health/Health and Wellness
      • Early Days of Life Sequencing
      • Diversity in Precision Medicine
      • Resilience
      • AI and Machine Learning
      • Gene Editing
      • Large Scale Bio-data Resources
        to Support Drug Development (PPPs)
      • Point-of Care Dx Platform
      • FDA Efforts to Accelerate PM
      • Implementation into Health Care Delivery
      • Next Gen. Workforce of PM
      • Immunotherapy
      • Robust Clinical Decision Support Tools
      • Creating Clinical Value with Liquid Biopsy
        ctDNA, etc.
      • Neoantigens
      • Emerging Technologies In PM
  • Track 2- PMWC 2018 Duke Showcase, will enable 15-minute company presentations on latest novel technologies. Apply to present here.
big data diagnostics session

Clinical Dx Showcase

crispr showcase

Emerging Therapeutics Showcase

NGS Showcase

Genomic Profiling Showcase

AI Showcase Session Image

AI and Data Sciences Showcase

  • Luminary and Pioneer Awards, honoring individuals who contributed, and continue to contribute, to the field of Precision Medicine
  • 500+ multidisciplinary attendees, from across the entire spectrum of healthcare, representing different types of companies, technologies, and medical centers with leadership roles in precision medicine

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