2018 Agenda

  • How to Bring Clinical Research Closer to Patients and Patients Closer to Clinical Research

    Arguably the greatest change we can collaborate on in bringing patients closer to clinical research is to make clinical trials a care option. Higher rates of clinical trial participation inside of a health system produces better patient outcomes, lower cost of care and happier patients. Health systems and patients get access to the latest research and pharma can get access to more patients in need of clinical research options.

    Clinical research is typically transactional and not integrated as part of a healthcare organization’s care options. Patients almost never learn about clinical research from their physicians unless their physicians are directly engaged in a clinical trial. The value of integrating clinical research into the overall continuum of care is often lost on health care organizations and in this meeting, we address how to bridge the gap and overcome many of the obstacles. It is our goal to generate a strong pipeline of leaders that have a shared vision for the future of clinical research as a care option and support the changes needed to make this a reality.

    Advisory Board:

    Murray Abramson, MD, VP, Clinical OperationsBiogen

    Jennifer ByrneFounderThe Greater Gift

    Marcella Debidda, PhDVP, Patient Advocacy, monARC Bionetworks

    Jeff James, CEOWilmington Health

    Suzanne Nutter, Sr Director, Pharmaceutical Project ManagementEli Lilly

    Katherine VandebeltChief Ecosystem OfficerReify Health, Inc

  • 8:15 am

  • Breakfast

  • 8:45 am

  • Co-Chair's Opening

    • State of the industry as it relates to clinical research as a care option
    • What does this mean as a movement and how can we create it?
    • Community examples of raising public awareness of clinical trials
    • Unlocking the potential of clinical research through awareness
    • What role do leaders in healthcare play?

    Jeff James

    CEOWilmington Health

    Katherine Vandebelt

    Chief Ecosystem Officer, Reify Health, Inc

  • 9:00 am

  • Why Are Clinical Trials Not Typically a Care Option?

    • What are the blockers or conflicts (laws, culture, behaviors, etc) that prevent clinical research from becoming a care option? 
    • What is the difference between a movement and an initiative – how should we think about clinical research as a care option? Benefits?
    • What are the enablers or requirements to incorporate clinical research into care options for the patient?
    • How to pave a path for possibility?
    • Update on data to support how trials can be a care option

    Murray Abramson
    Murray Abramson, MD

    VP, Clinical Operations, Biogen

    Jeff James

    CEOWilmington Health

  • 9:30 am

  • What are the Regulatory and Ethical Considerations if Lines are Blurring between Clinical Research vs. Clinical Care?

    • Ethically and regulatory, research and care or treatment are separate spheres. What happens when they are brought together?
    • Are there ethical barriers that need to be overcome to allow clinical research to be offered as an option as part of clinical care?
    • What are the ethical issues that surround offering a patient the opportunity to consider enrolling in a clinical trial?
    • What current efforts are underway to address these issues?

    Led by:

    Katherine Vandebelt

    Chief Ecosystem Officer, Reify Health, Inc

    Alison Bateman-House, PhD, MPH, MA

    Assistant Professor, Division of Medical Ethics, NYU Langone Health

  • 10:00 am

  • Patients and Patient Advocacy View on CRAACO

    • What patient advocacy thinks about clinical research being a care option
    • How can we leverage patient advocacy’s expertise?
    • How can we educate patients on opportunities for patient engagement?

    Marcella Debidda
    Marcella Debidda, PhD
    VP, Patient Advocacy, monARC Bionetworks

    Christopher Dowd
    Christopher Dowd

    Business Director of Clinical Affairs, Cystic Fibrosis Foundation

    Sarah Krug-new
    Sarah Krüg

    CEO, CANCER 101

    Albert Rizzo-bw
    Albert A Rizzo, MD, FACP, FCCP
    Senior Medical Advisor, American Lung Association and Section Chief Pulmonary, Christiana Care Health System

    Tricha Shivas
    Tricha Shivas

    Development Manager, WomenHeart

  • 10:30 am

  • Networking Break

  • 11:00 am

  • Healthcare and Clinical Research Ecosystems Jointly Discuss how to Come Together to Give Patients the Best Possible Care Options that Include a Clinical Trial

    This session brings together representation from pharma, CRO, ACO, payers, and regulatory to jointly answer the following:

    • Who are the primary constituents in the clinical care ecosystem and how do they influence and inform each other?
    • How do we break the stigma that clinical research is too specialized as an option for patients?
    • How do we make it an easy, manageable part of patients’ daily lives?
    • Is it an offering that is made in the best interest of everybody?
    • How do we manage the importance of transparency of expectations, randomizations, outcomes of clinical research?
    • Do some of our solutions to our problems create barriers for other members of the system?
    • How do we align the objectives and perspectives of patients, sites, and industry?
    • What is the industry’s obligation? What should they be doing?

    Murray Abramson
    Murray Abramson, MD

    VP, Clinical Operations, Biogen

    Jennifer Byrne
    Jennifer Byrne

    Founder, Greater Gift Initiative

    Jeff James

    CEOWilmington Health

    John Stewart
    John Stewart, MD

    Chief of Surgery, Associate Professor of Surgery,
    Durham Veterans Administration Hospital, Duke University

  • 11:45 am

  • Payor View on CRAACO

    • What are the barriers from the insurance companies?
    • Self funded employee view
    • Insurance company view
    • How could large insurance companies fit this in or how it would be a challenge?


    Joseph Ternullo
    Joseph Ternullo, JD, MPH

    Vice Chair, Society for Participatory Medicine


    Mary Hennings
    Mary N. Hennings, Consulting LLC

    Neil Shah
    Neil Shah, PharmD

    Specialty Pharmacist, Blue Cross Blue Shield North Carolina
  • 12:30 pm

  • Lunch

  • 1:30 pm

  • How Can We Work with Medical Practices to Offer Patients Clinical Trials as a Care Option?

    • Infrastructure and support
    • How to establish physician champions?
    • How to influence leadership support?
    • Contacting patients

    Jennifer Byrne
    Jennifer Byrne

    Founder, Greater Gift Initiative

    Judy Hung
    Judy Hung, MD

    Director Trial Innovation Unit, Division of Clinical Research, Massachusetts General Hospital

    Jeff James

    CEOWilmington Health

    Greg Sweatt
    Greg Sweatt

    Senior EVP Value Based Care, Co-Founder, ePatientFinder

    Kurt Waldhuetter
    Kurt Waldhuetter

    VP, Research Innovation & Business, Aurora Research Institute

  • 2:00 pm

  • How Do We Recruit and Train More Investigators?

    • How to make it easier for physicians to become investigators
    • How to get physicians involved?
    • What is the pathway?
    • How to get physician champions who are well versed in clinical research?
    • What programs are available for physicians?

    Jennifer Byrne
    Jennifer Byrne

    Founder, Greater Gift Initiative

    Jeff James

    CEOWilmington Health

    John Stewart
    John Stewart, MD

    Chief of Surgery, Associate Professor of Surgery, Durham Veterans Administration Hospital, Duke University

  • 2:30 pm

  • How to Move Clinical Research Into Communities That Would Truly Benefit from It

    • Educating sites to build confidence and skill sets
    • Case examples

    Jonathan Jackson
    Jonathan Jackson, PhD

    Director CARE Research Center, Massachusetts General Hospital

    Jim Kremidas
    Jim Kremidas

    Executive Director, Association of Clinical Research Professionals

  • 3:15 pm

  • Closing Statement/Wrap-Up