Deven McGraw is the Chief Regulatory Officer for Ciitizen. Prior to joining Ciitizen, she directed U.S. health privacy and security policy through her roles as Deputy Director for Health Information Privacy at the HHS Office for Civil Rights (the office that oversees HIPAA policy and enforcement) and Chief Privacy Officer (Acting) of the Office of the National Coordinator for Health IT. Deven also advised PCORNet (the Patient Centered Outcomes Research Network), as well as the federal All of Us Research Initiative, on HIPAA and patient-donated data research initiatives. Read her full bio.

Interview with Deven McGraw of Ciitizen

Q: Patient healthcare data aggregation and analysis is seen as both the panacea for tremendous breakthroughs in precision medicine and as one of its biggest challenges. Are both true and how so?

A: Yes, both are true. Achieving breakthroughs in precision medicine will require a lot of data – and yet it is often difficult for researchers to amass all of the data needed to advance precision medicine discoveries. Getting data from institutions can be a slog, due to multiple layers of review, lack of institutional incentives to share, and proprietary concerns. But individuals – particularly patients and their families – have great incentives to share data, to save themselves and to improve prospects for others like them. But the challenge is that individuals can face enormous obstacles in getting their data. They have a legal right to this data – but the institutions who hold this data still make it difficult for individuals to get their data.

Q: What are the biggest hurdles today in getting people to share their health data?

A: The biggest hurdle today in getting people to share their health data is that people can’t share what they don’t have. The obstacles to individuals getting all of their health data – so they can then share it to power discoveries – are far larger than the obstacles to sharing once individuals have dominion and control over their data. A second hurdle (which frankly will be far easier to solve) is providing people with trusted options for donating their data. It is a misnomer that people who are sick “don’t care” about their privacy – they do care, but they also want ways to liberally share their health information in order to try to help themselves and others like them.

Q: How can they be overcome? What is needed?

A: What is needed is for entities to more consistently comply with legal mandates to provide health data to patients. This is the law in the U.S. (HIPAA), and it is also the law in the EU (GDPR) and in other jurisdictions. U.S. law could also use some improvements, for example shorter timelines for release of data (30 days is way too long) and waiving of fees, particularly for patients who are sick.

Q: We have a long way to go with clinical trials enrolling at 2-3% today and that number falling. What type and level of shift in culture, laws, collection methods, or other areas is going to be needed to accomplish widespread data sharing?

A: Giving health information to patients – and letting them share data for clinical trial enrollment purposes – is a strategy that has been significantly underutilized. There are some restrictions that institutions face in allowing researchers to both examine data for potential clinical trial participants and then reach out to those individuals to enroll them. In addition, a single institution may not have all of the relevant data on a patient, because individuals – particularly those who are ill – are cared for in multiple settings. If patients are given dominion and control over all of their health information, they can actively seek out potential trials, or allow trial sponsors to examine their data to determine if they are eligible.

Q: Will there always be certain communities or populations that will not participate in research because of history or privacy issues?

A: Without a doubt there is work to do to earn the trust of individuals in communities with a deep distrust of research. But it is critical that we do this work, because those communities are significantly affected by disparities in health care – and data sharing will be key to eliminating those disparities. Building trust starts by giving control of health data to those individuals and communities – so that they are empowered to make decisions about with whom they will share this data.

Q: What role will personal technology play in scaling health data sharing and collection?

A: The patient, who has the right to all of their health information and the most interest in sharing it, should be the hub for data collection and sharing. But patients generate a great deal of health information – personal technology is key to enabling each patient to collect, aggregate and easily share his or her information. In addition, medical breakthroughs likely require amassing of large data sets – so personal technologies that enable patients to collectively share their data for medical breakthroughs will be essential.

Interview with Shannon J. McCall of Duke University

Q: Genomic medicine is entering more hospitals and bringing with it non-invasive technology that can be used to better target and treat diseases. What are some key milestones that contributed to this trend?

A: After several years of the promise of precision medicine and abundant clinical trial work, the recent FDA approval of solid-tumor-agnostic therapies dependent on molecular biomarkers has catapulted genomic/precision medicine into the standard-of-care for late stage cancer.

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Interview with Tao Chen of Paragon Genomics, Inc.

Q: Once sequencing has been validated as a clinical solution via trusted workflows, and coinciding with the technological developments driving costs lower, we can expect accelerated human genome profiling for clinical Dx. How soon, do you think, will we see accelerated growth and what can we expect?

A: For whole genome sequencing to be a reliable clinical tool, it will largely depend on the cost of sequencing the genome and our ability to interpret the data.

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Call for Action: The Time is Now for Patient Data Interoperability

The use of new technologies can provide breakthrough benefits for both patients and providers. However, with increased sharing comes increased risks to the security and privacy of patient data. Currently data is being accumulated across many organizations and initiatives but is often either siloed or simply not accessible. Researchers suggest that patient education tactics can help quell security concerns during patient data sharing.

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Interview with Andrew Magis of Arivale

Q: Once sequencing has been validated as a clinical solution via trusted workflows, and coinciding with the technological developments driving costs lower, we can expect accelerated human genome profiling. How soon, do you think, will we see what kind of accelerated growth?

A: I think the acceleration has already begun. Large sequencing projects such as NHLBI Trans-omics for Precision Medicine (TOPMed) and NIH All of Us are sequencing 150,000 and 1 million individuals, respectively.

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Interview with Emily Leproust of Twist Bioscience

Q: NGS is enhancing patient care through improved diagnostic sensitivity and more precise therapeutic targeting. Prominent examples include cystic fibrosis and cancer. What other clinical areas NGS will most likely to change the standard-of-care in the near future?

A: Preventative medicine – using genetic data to identify traits that have the potential to cause harm in the future.

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Interview with Michael Phelps of UCLA

Q: You invented the PET scanner that changed the lives of millions of patients with cancer, brain and heart diseases. What are the potential benefits to patients of combining PET with radio-ablation technologies?

A: PET provides imaging assays of the biology of disease in many diseases today.

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Interview with Daniela Ushizima of Lawrence Berkeley National Lab

Q: Artificial intelligence (AI) techniques have sent vast waves across healthcare, even fueling an active discussion of whether AI doctors will eventually replace human physicians in the future. Do you believe that human physicians will be replaced by machines in the foreseeable future? What are your thoughts?

A: I really hope that human physicians will not be replaced by machines in the foreseeable future.

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Interview with Amy Compton-Phillips of Providence St. Joseph Health

Q: Genomic medicine is entering more hospitals and bringing with it non-invasive technology that can be used to better target and treat diseases. What are some key milestones that contributed to this trend? What technological advancements are driving this change?

A: Genomic medicine is poised to move quickly from the research realm into integration with healthcare delivery, but there is always a time lapse between technology advances and what we do with those advances.

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Interview with James Taylor of Precision NanoSystems

Q: There are various new, emerging technologies that bring us closer towards a cure for life-threatening disorders such as cancer, HIV, or Huntington’s disease. Prominent examples include the popular gene editing tool CRISPR or new and improved cell and gene therapies. By when can we expect these new technologies being part of routine clinical care?

A: Patients are already receiving treatment using novel gene and cell therapies.

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Interview with Julie Eggington of Center for Genomic Interpretation

Q: Together with Robert Burton you founded the Center for Genomic Interpretation (CGI), a non-profit organization. Can you tell us more about CGI and the mission behind it?

A: CGI’s mission is to drive quality in clinical genetics and genomics. CGI works primarily with laboratories, health insurance payers, clinicians, and patients/consumers.

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Interview with Deven McGraw of Ciitizen

Q: Patient healthcare data aggregation and analysis is seen as both the panacea for tremendous breakthroughs in precision medicine and as one of its biggest challenges. Are both true and how so?

A:Yes, both are true. Achieving breakthroughs in precision medicine will require a lot of data – and yet it is often difficult for researchers to amass all of the data needed to advance precision medicine discoveries.

Read More

Breaking News: CMS Takes Actions to Lower Prescription Drug and Other Healthcare Costs – Seema Verma Speaking @PMWC19

The cost of healthcare has been rising at an annual rate of 7% be it company-sponsored health insurance, public insurance such as Medicare and Medicaid, or private insurance. As such, healthcare was top of mind for many individuals this 2018. In the November midterm election many items related to healthcare such as Medicaid expansion, provider pay and indirect effects on the Affordable Care Act could be found on the ballot.

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Did You Catch All 6 of These Big Genomic Medicine Headlines in Recent Weeks?

Genomic sequencing, the driver of modern genomic medicine has come a long way in a short time, and its potential to continue driving innovations in precision medicine is enormous. PMWC 2019 Silicon Valley Jan. 20-23 in the Santa Clara Convention Center will focus on topics that are in the headlines and on everyone’s minds, in NGS and in precision medicine.

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Interview with Christopher Hopkins of Nemametrix

Q: There are various new, emerging technologies that bring us closer towards a cure for life-threatening disorders such as cancer, HIV, or Huntington’s disease. Prominent examples include the popular gene editing tool CRISPR or new and improved cell and gene therapies. By when can we expect these new technologies being part of routine clinical care?

A: We should all be working towards integrating these technologies into routine patient care as quickly as possible, because genomic medicine has the capacity to make profound impacts now.

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Interview with Kristine Ashcraft of YouScript

Q: There are various new, emerging technologies that bring us closer towards a cure for life-threatening disorders such as cancer, HIV, or Huntington’s disease. Prominent examples include the popular gene editing tool CRISPR or new and improved cell and gene therapies. By when can we expect these new technologies being part of routine clinical care?

A: It’s certainly hard to predict, but our goal is to see precision medicine tools in the hands of most providers in the next five years.

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Johns Hopkins
University Of Michigan

The Precision Medicine World Conference (PMWC), in its 16th installment, will take place in the Santa Clara Convention Center (Silicon Valley) on January 20-23, 2019. 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.

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

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
  • 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
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