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05: Patient Engagement [clear filter]
Sunday, June 23
 

9:00am

SC22: #22: Protocol Co-Design with Patients and Advocates
Component Type: Tutorial
CE: ACPE 3.25 Application UAN: 0286-0000-19-502-L04-P; CME 3.25; IACET 3.25; RN 3.25

This short course will allow participants to experience multiple activities which encourage active collaboration among patients, trial sponsors, and advocates. Following a brief introduction outlining the benefits of interactive activities with multiple stakeholders, you will engage in several activities:
  • Protocol red lining (individual/partner activity)
  • Design your own protocol (small group activity)
  • Walk the protocol (large group activity)
The first activity asks you to react to a draft protocol individually. You will then share your reactions with a partner representing a different stakeholder group. The second activity encourages collaboration among multiple stakeholders as table teams work to design a protocol that meets the needs of all stakeholders. The third and final activity will have the entire group reacting individually to a sample protocol (represented by posters on the wall), then discuss their reactions and seek consensus. Each activity will be debriefed to not only assess the experience, but to discuss how a similar activity might be applied to your needs. We will conclude by presenting a case-study that outlines the successful application of these methods for trial design. These exercises were designed by clinicians, instructional designers, and experts in patient literacy. They have been used successfully in numerous workshop settings to obtain input on protocol design features and trial recruitment and retention methods. Feedback on the experience from past participants has been very positive. It is our hope that you will leave the workshop with an understanding of how these types of exercises can be designed and executed to encourage collaboration and to design clinical trials that meet the needs of all stakeholders. An additional registration fee is required for all preconference short courses. Back to DIA 2019 Short Courses

Who should attend?

This short course is designed for individuals responsible for clinical trial design and protocol development; clinical trials operations professionals; advocacy leaders who wish to collaborate with trial sponsors; CRO professionals; patient engagement professionals; advocacy engagement professionals.

Learning Objectives

At the conclusion of this course, participants should be able to:
  • Evaluate valuable and detailed input from patients and advocates on clinical trial design;
  • Design patient interactions that encourage collaboration among patients, sponsors, and advocacy groups;
  • Critique clinical trials to ensure they meet the needs of all stakeholders.



Speakers
avatar for Kelly Franchetti

Kelly Franchetti

RN, CCRN, CEN Vice President, Global Head Patient Insights & Engagement, ICON plc.
Kelly has a diverse background comprised of nursing, advocacy & clinical research. She is also the mother of a child with a rare disease. This gives her a unique 360 degree view of patients’ & caregiver’s perspectives in the realm of disease management, treatment and burden. As... Read More →
avatar for Maggie Adamski

Maggie Adamski

Senior Director, Global Patient Insights, ICON plc.
Maggie brings over 25 years of marketing and clinical research experience within pharma, CROs and agencies. Her work spans patient recruitment, advocacy engagement, patient insights, site training and patient engagement technology. Currently, as Senior Director, Global Patient Insights... Read More →
avatar for Ariel Rosen

Ariel Rosen

Director, Global Patient Insights, ICON plc.
Ariel has over 15 years of wide-ranging experience in clinical research including tenures as a study coordinator at large academic medical centers. She has an MS in Clinical Neuropsychology and spent a large portion of her career focusing on CNS indications. Ariel has extensive experience... Read More →


Sunday June 23, 2019 9:00am - 12:30pm
Room 3 San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA

9:00am

SC42: #42: Patient Preferences: Using Conjoint Analysis and Stated Preferences in Drug Development and Regulatory Decision Making
Component Type: Tutorial
CE: ACPE 6.50 Application UAN: 0286-0000-19-519-L04-P; CME 6.50; IACET 6.50; RN 6.50

The need to understand patient preferences for health and healthcare has become well established and demand for stated preference studies has grown exponentially in recent years. This short course is designed as an introduction to a range of stated-preference methods and the application of these methods in drug development, regulatory decision-making, and patient advocacy. The short course will also provide an overview of good research practices and principles that are broadly applicable to all stated-preference methods and describe how good research practices can be applied to discrete choice experiments and several other stated-preference methods. Topics to be covered will include designing a survey, developing an experimental design, analyzing data, and presenting results. This short course will include hands-on exercises and detailed case studies of recent empirical examples to illustrate concepts. An additional registration fee is required for all preconference short courses. Back to DIA 2019 Short Courses

Who should attend?

This introductory to mid-level course designed to acquaint attendees with the current state of the art in the use of methods for the development of evidentiary patient preference information. Expected attendees may include: industry, regulators, payers, patients and patient advocacy representatives.

Learning Objectives

At the conclusion of this course, participants should be able to:
  • Identify when & how to successfully develop and present patient preference information for use in a range of applications, including regulatory interactions such as new drug applications;
  • Discuss specific methodologies frequently used in the development of patient preference information.



Speakers
avatar for Rachael DiSantostefano

Rachael DiSantostefano

Senior Director, Benefit Risk, Epidemiology, Janssen Research & Development, LLC
Rachael L. DiSantostefano, MS PhD, is a Senior Director of Benefit-Risk in the Epidemiology Department within Janssen Pharmaceuticals, R&D, LLC. She has 25 years of pharmaceutical research experience across the quantitative disciplines of epidemiology, biostatistics, and health outcomes... Read More →
avatar for Brett Hauber

Brett Hauber

Senior Economist, Vice President of Health Preference Assessment, RTI Health Solutions
Brett Hauber is Senior Economist and Vice President of Health Preference Assessment at RTI Health Solutions and Affiliate Associate Professor in the School of Pharmacy at the University of Washington. His is an expert in stated-preference methods. He was principal investigator for... Read More →
avatar for Carol Mansfield

Carol Mansfield

Senior Economist and Head, Health Preference Assessment, RTI Health Solutions
Carol Mansfield, PhD, is a Senior Economist and Head in the Health Preference Assessment group at RTI-HS, where she conducts stated-preference studies for pharmaceutical applications. She has 25 years of experience conducting research related to health and the environment. She has... Read More →
CP

Christine Poulos

Senior Research Economist and Head, Health Preference Assessment, RTI Health Solutions
avatar for Kristin Bullok

Kristin Bullok

Benefit-Risk Management Scientist, Global Patient Safety, Eli Lilly and Company
Kristin Bullok, PhD, is a research scientist in benefit-risk management at Eli Lilly and Company, Global Patient Safety. Since joining Lilly, she has years of combined experience in conducting structured benefit-risk assessments, consulting on patient preference trade-off studies... Read More →


Sunday June 23, 2019 9:00am - 5:00pm
Room 11B San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA

1:30pm

SC37: #37: Patient Literacy 101: Practical Strategies for Improving Your Patient Materials
Component Type: Tutorial
CE: ACPE 3.25 Application UAN: 0286-0000-19-516-L04-P; CME 3.25; IACET 3.25; RN 3.25

This short course is designed to teach participants a step-by-step approach to designing patient materials and educational initiatives that effectively communicate concepts at a level appropriate for their audiences. Patient literacy (or health literacy) is certainly not a new topic, yet isn’t getting its much-deserved attention these days. Materials developed for patient communications or education often miss the mark. The application of literacy and numeracy principles is now more critical than ever, due to the increased tendency of patients to seek out disease state and treatment-related information on their own. In this interactive short course, participants will learn principles of patient literacy, receive a number of tools to assist them in developing their own patient-literate materials, and learn about excellent resources that can be used to help them continue to develop their skills in this area. Interactive exercises will provide opportunities to practice these skills. This will include evaluating existing materials, editing to improve literacy, and development of new materials. We will address both written and oral communication. Finally, an active discussion will provide strategies on how participants can work to encourage a culture of patient literacy within their own organizations, becoming champions of this approach and bringing about true cultural change. An additional registration fee is required for all preconference short courses. Back to DIA 2019 Short Courses

Who should attend?

This short course is designed for individuals responsible for the design and development of patient-facing materials; clinical educators; developers of patient educational materials.


Learning Objectives

At the conclusion of this course, participants should be able to:
  • Define patient literacy, numeracy and health literacy, describe how each affects the quality of patient communications and educational efforts;
  • Identify common mistakes in patient-facing materials;
  • Develop a strategy for improving your organization’s patient-facing communications;
  • Develop a culture that embraces patient literacy principles.



Speakers
avatar for Kelly Franchetti

Kelly Franchetti

RN, CCRN, CEN Vice President, Global Head Patient Insights & Engagement, ICON plc.
Kelly has a diverse background comprised of nursing, advocacy & clinical research. She is also the mother of a child with a rare disease. This gives her a unique 360 degree view of patients’ & caregiver’s perspectives in the realm of disease management, treatment and burden. As... Read More →
avatar for Valerie Martin

Valerie Martin

Associate, Global Patient Insights and Engagement, ICON plc.
Valerie’s career has been centered around leading and managing large-scale, global patient recruitment and retention programs. She also has extensive experience crafting individualized site support initiatives to accelerate enrollment. She prioritizes the needs of each program’s... Read More →
avatar for Ariel Rosen

Ariel Rosen

Director, Global Patient Insights, ICON plc.
Ariel has over 15 years of wide-ranging experience in clinical research including tenures as a study coordinator at large academic medical centers. She has an MS in Clinical Neuropsychology and spent a large portion of her career focusing on CNS indications. Ariel has extensive experience... Read More →


Sunday June 23, 2019 1:30pm - 5:00pm
Room 3 San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA