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 Dan Rhodes from Strata Oncology

Q: What need is Strata Oncology addressing?

Despite substantial advances in precision oncology, the majority of advanced cancer patients still do not benefit from comprehensive tumor molecular profiling or precision therapy trials.

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Interview with Lisa McLaughlin from Workit Health

Q: What need is Workit Health addressing?

Drug overdoses killed more Americans last year than were lost during the entire Vietnam War (69,000).

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Interview with Olivier Elemento from Weill Cornell Medicine

Q: What research are you or your lab focusing on and why, and what problem(s) are you trying to solve?

I direct the Englander Institute for Precision Medicine, an Institute that focuses on using genomics and informatics to make medicine more individualized.

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Interview with Dr. Dunnenberger from NorthShore University HealthSystem

Q: What patient population is NorthShore University HealthSystem serving and which services are you specializing in?

NorthShore is a four hospital community health system with over 100 outpatient medical offices.

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How Artificial Intelligence (AI) Will Potentiate Individualized Medicine

We had the chance to sit down with Dr. Topol to hear his thoughts on big data, digital health, sensors, and artificial intelligence, some of the newest precision medicine technologies.

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Interview with Jennifer Kloke from Ayasdi

Q: What need is Ayasdi addressing?

Ayasdi is pioneering the application of AI to value-based care by targeting two of the most complex problems in healthcare: population risk stratification and clinical variation management.

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Q&A with Eric Topol, Executive Vice President, Scripps Research Institute

Dr. Eric Topol, voted by Modern Healthcare as the most influential physician executive in the United States, shared his thoughts on why people should own and control their own data.

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CMS to Approve Coverage of NGS-based Cancer Testing | Big Pharma’s Response & The effect on PM

Why this is a Big Deal? As we know, private insurers follow suit once Medicare makes a decision such as this. This portends well for genetic testing to become routine standard of care for patients with advanced cancers.

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Q&A with Mickey Kertesz, Chief Executive Officer, Karius

Q: Tell us a little bit about Karius – what problem(s)/need(s) are you trying to address and what technology is behind it to achieve this?

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Join PMWC 2018 Michigan This June to Learn More about How the Modulation of the Epigenome Increases the Risk for Type 2 Diabetes

Dr. Michael Boehnke (University of Michigan) – who pioneered large-scale studies identifying genetic risk in diabetes and bipolar disorder – shared with us some recent insights about recent advances in exome and genome sequencing and their applications to better understand disease biology and etiology of psychiatric disorders

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AI and Machine Learning in Healthcare – Not Just Hype Anymore

AI and machine learning has gotten a lot of attention over the last year, as it appears to be poised to become one of the biggest game changer in many industries, including the healthcare sector.

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Q&A with Eric Lefkofsky, CEO of Tempus and Co-founder of Groupon

“Treating a cancer patient without the benefit of modern software is the same as driving at night without headlights”

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PMWC Michigan – Big Data in Action: Data-Driven Insights in the Clinic

We are excited to launch the first Precision Medicine World Conference (PMWC) at the University of Michigan June 6-7, 2018.

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Q&A with Susan A. Murphy, Harvard University

Q: Your lab develops experimental trial designs and data analysis methods for increasing the usefulness of mobile health interventions. Can you please give examples how these trials are being used in the areas of substance abuse, physical activity, or helping people quit smoking?

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Q&A with Dr. Dara Richardson-Heron, Chief Engagement Officer, All of Us

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?

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University of Michigan

The 14th Precision Medicine World Conference (PMWC) will take place at the University of Michigan on June 6-7, 2018. This conference coincides with University of Michigan’s launch of a new Precision Health research initiative that integrates U of M’s strengths in Medicine, Engineering, Pharmacy, and Public Health. (hyperlink) This initiative combines biomedical expertise, big data, and the social sciences enabling a comprehensive approach to providing patients with tailored health solutions.

To support the University of Michigan’s goal to bring together leading researchers from across the university and the country to springboard this new and exciting research initiative, PMWC and U-M have agreed that the campus is an optimal location for the next conference. This forum will showcase practical content that helps close the knowledge gap among different sectors, thereby catalyzing cross-functional fertilization and collaboration to benefit both University of Michigan and PMWC attendees.

The program will feature innovative technologies, and analyze the success of already 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 advances in precision medicine and cutting-edge strategies and solutions that are fundamentally changing how patients are treated. This is reflected in the Program Theme: “Big Data in Action: Data-driven Insights in the Clinic”.

Agenda highlights:

    • More than 35 sessions with 100+ thought-provoking, insightful talks that cover all facets of precision medicine
    • Two tracks will showcase sessions on the latest advancements in precision medicine which include, but are not limited to:
    • Changing Pharmacogenomics
    • Community Setting Challenges
    • Patient Issues and Challenges
    • Legal and Ethical Issues
    • Integrating genomic data into EMRs
    • Emerging Technologies
    • Personalized Health Care Delivery
    • Personalized Modeling of Precision Health
    • NIH’s All of Us Study
    • Big Data in Action
    • Opioid Precision Health
    • Neurosciences
    • Big Data in the Clinic
    • Wellness and Aging
    • Epigenetics and Aging
    • Precision Cancer Therapy
    • Data Sharing in Translational Medicine
    • Economic and Socio-political Issues

The 14th Precision Medicine World Conference (PMWC) will take place at the University of Michigan on June 6-7, 2018. This conference coincides with University of Michigan’s launch of a new Precision Health research initiative that integrates U of M’s strengths in Medicine, Engineering, Pharmacy, and Public Health. (hyperlink) This initiative combines biomedical expertise, big data, and the social sciences enabling a comprehensive approach to providing patients with tailored health solutions.

To support the University of Michigan’s goal to bring together leading researchers from across the university and the country to springboard this new and exciting research initiative, PMWC and U-M have agreed that the campus is an optimal location for the next conference. This forum will showcase practical content that helps close the knowledge gap among different sectors, thereby catalyzing cross-functional fertilization and collaboration to benefit both University of Michigan and PMWC attendees.

The program will feature innovative technologies, and analyze the success of already 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 advances in precision medicine and cutting-edge strategies and solutions that are fundamentally changing how patients are treated. This is reflected in the Program Theme: “Big Data in Action: Data-driven Insights in the Clinic”.

Agenda highlights:

    • More than 35 sessions with 100+ thought-provoking, insightful talks that cover all facets of precision medicine
    • Two tracks will showcase sessions on the latest advancements in precision medicine which include, but are not limited to:
        • Changing Pharmacogenomics
        • Community Setting Challenges
        • Patient Issues and Challenges
        • Legal and Ethical Issues
        • Integrating genomic data into EMRs
        • Emerging Technologies
        • Personalized Health Care Delivery
        • Personalized Modeling of Precision Health
        • NIH’s All of Us Study
        • Big Data in Action
        • Opioid Precision Health
        • Neurosciences
        • Big Data in the Clinic
        • Wellness and Aging
        • Epigenetics and Aging
        • Precision Cancer Therapy
        • Data Sharing in Translational Medicine
        • Economic and Socio-political Issues

 

Confirmed thought leaders include:

Lee Hood

Lee Hood

Chief Science Officer, Providence Health

Eric Topol

Eric Topol

Chief Academic Officer, Scripps Health

Francis Collins

Francis Collins

Director of the National Institutes of Health (NIH)

Vicki L. Ellingrod

Vicki L. Ellingrod

Ass. Dir., Michigan Inst. for Clinical & Health Research

Goncalo Abecasis

Goncalo Abecasis

Chair, Department of Biostatistics, UM

Jeffrey Leiden

Jeffrey Leiden

Chairman, President and CEO, Vertex

Matthias Kretzler

Matthias Kretzler

Professor, Nephrology & Internal Medicine, UM

Arul Chinnaiyan

Arul Chinnaiyan

Professor of Pathology, Medical Institute, UM

David Ginsburg

David Ginsburg

Prof., Human Genetics; Investigator, UM

Steve Nelson

Steve Nelson

Chief Executive Officer, UnitedHealthcare

Gil Omenn

Gil Omenn

Dir., Comput. Med. & Bioinformatics Center, UM

Eric Lefkofsky

Eric Lefkofsky

Founder and CEO, Tempus

Steven Leeder

Steven Leeder

Dir., Clin. Pharmacology Children’s Mercy Hospital,(CMH)

Ariella Shikanov

Ariella Shikanov

Assistant Professor, Biomedical Engineering, UM

Lawrence Corey

Lawrence Corey

Presi. & Dir. Emeritus, Fred Hutch Cancer Research Cent.

Amir Dan Rubin

Amir Dan Rubin

President and CEO, One Medical

Isaac (Zac) Kohane

Isaac (Zac) Kohane

Professor of Pediatrics, Harvard University

Sachin Kheterpal

Sachin Kheterpal

Associate Professor, Anesthesiology, UM

Event Highlights

When
June 6, 2018 8:00am to June 7, 2018 5:00pm
Where
Ross School of Business
701 Tappan Ave
Ann Arbor, MI 48109
Cost
$749 by April 25th, 2018

Registration: PMWC Conferences

Michigan June 6-7, 2018

First PMWC In Midwest
2 Track Speaker Lineup
Access to the exhibition
Breakfast & lunch refreshments
Award Reception

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