Optimizing Patient Participation in Clinical Trials: Challenges & Opportunities Going Forward (Patient/Industry Keynote Panel)

Life Sciences, Clinical Trials, Patient Recruitment & Retention,
  • Wednesday, June 25, 2014

Optimizing patient participation in clinical trials has always been critical to the success of bringing safe, new medicines to market and improving the health and lives of patients. However, in this post-blockbuster era a perfect storm has been brewing, resulting in a paradigm shift across the clinical trials landscape.

Industry is facing rising development costs as well as increasing pressure from patients, regulators, prescribers, payors and shareholders, all while the pipeline continues to be squeezed. Not surprisingly, the prescription is change, and industry is focused on identifying innovative, holistic approaches, to position themselves, and other key stakeholders, for future success. This is best reflected by some of the new words and phrases that have made it into the lexicon of clinical trials today and is the basis for this important Keynote panel discussion.

Today, key industry thought leaders will have the unique opportunity to be queried by our moderator and patient advocate, @afternoonnapper, on such topics as:

  • Patient-Centeredness vs. Patient Centricity vs. Patient Engagement
  • Are there country differences in the practice and implementation of patient centric activities?
  • Industry culture; ‘open innovation’; the importance of collaboration and ‘design thinking’
  • The evolution of patient advocacy groups and fostering successful partnerships
  • Digital strategy, social media and the ePatient
  • Mobile apps, infographics for greater education, enrollment and engagement
  • Transparency, trust and big data
  • Emerging technologies; disruptive innovation initiatives
  • Patient leaders


Sarah E. Kucharski Award-winning Writer and Editor, Smoky Mountain Living Patient Advocate and ePatient Advisory Board Member, Medicine X, Stanford University School of Medicine CEO/Chairman and Founder, FMD Chat

Sarah E. Kucharski is an award-winning writer and editor of Smoky Mountain Living, a nationally-published, regional lifestyle magazine covering Western North Carolina, East Tennessee, North Georgia, and Southwest Virginia. She is responsible for the magazine’s overall editorial concept and content in addition to business operations including freelancer relations, marketing, sponsorships, and social media.

Kucharski also is a health advocate fostering the patient voice in medicine. Special interests include the patient experience in healthcare settings, the doctor-patient relationship, the patient-caregiver relationship, chronic illness, health literacy, advance planning and end-of-life issues. She is CEO/Chairman and Founder of FMD Chat, a nonprofit organization supporting those around the world affected by a rare vascular disease. As FMD Chat’s leader, she oversees the organization’s consistent achievement of its mission and financial objectives; fundraising; publicity and media relations; domestic and international partnerships; volunteer recruitment and development.

She serves on the ePatient Advisory Board for Stanford University’s Medicine X conference, as a consultant to healthcare companies, and as an international public speaker whose previous engagements have included MedCity News’ ENGAGE conference in Washington, D.C.; Doctors 2.0 & You, a healthcare and social media conference in Paris, France; and BC Kidney Days in Vancouver, Canada. She also has partnered with medical school faculty at Stanford and UC Irvine to speak to med school students about the ePatient experience

Message Presenter

Joseph Kim, MBA Director Clinical Operations, Patient Engagement and Recruitment Shire Pharmaceuticals

Joseph Kim serves as the Clinical Operations Director at Shire, focusing on developing and implementing innovative trial optimization solutions in an outsourced model. He has spent over 15 years in the Pharma industry utilizing a unique approach that integrates his experiences working for Sponsors, CROs, and niche vendors. He has the rare combination of experience that includes early and late phase clinical research, and a command of IT related solutions and development models. Mr. Kim was also recognized as one of “20 Innovators Changing the Face of the Clinical Trials Industry” by CenterWatch. He holds a BS in Molecular Biology from Lehigh University and an MBA from Villanova.

Message Presenter

Jerry Matczak Community Manager, Lilly Clinical Open Innovation Eli Lilly and Company

Jerry Matczak is the Community Manager for Eli Lilly and Company’s Clinical Open Innovation (Lilly COI) effort, responsible for connecting and engaging patients, industry and other stakeholders to transform clinical research. He has primary responsibility for Lilly COI social media, including the www.lillycoi.com blog and @Lilly_COI twitter accounts.

Mr. Matczak’s 20 + years of experience at Eli Lilly include a variety of IT and clinical development roles, combined with a number of sales, marketing and technology roles in startup and consulting environments provide a diverse set of experiences that help him join people, technology and clinical trials. He has a BA in English & Philosophy from Allegheny College and a MS degree in Information Science from the University of Pittsburgh.

Message Presenter

Paulo Moreira VP - GCO, Head of External Innovation EMD Serono

Paulo Moreira is a Clinical Development executive with 24 years of experience in clinical research. He has been with EMD Serono for the last 14 year in positions of increasing responsibility within Clinical Operations. Most recently, as the Global Head of Clinical Strategic Partnering and presently as the Vice President of Clinical External Innovation. Paulo is also a Visiting Scholar at Boston College where he teaches at the Pathways in Clinical Research Program. Mr. Moreira is very active in several industry-wide organizations and also serves on the Steering Committee of the Clinical Trial Transformation Initiative

Message Presenter

Who Should Attend?

Directors, Managers, Heads of, Officers, Scientists, and Specialists in:

  • Pharma and Biotech
  • Contract Research Organizations
  • Site Management Organizations
  • Contract Manufacturing Organizations
  • Research Institutions/Universities
  • Institutional Review Boards/Research Ethics Boards
  • Government, Regulatory Groups
  • Patient Advocacy Groups
  • Associations/Non-profits
  • Patient Service and Clinical Solutions Providers

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