Cambridge Healthtech Institute’s 13th Annual

Patient Engagement, Enrollment and Retention through Communities and Technology  

Patient-Centric Approaches to Participant Engagement and Trial Optimization

February 20-21, 2020

Patient engagement, enrollment planning, patient recruitment, and a more patient-centric approach to study planning and execution are critical to drug development programs and garner a lot of attention by study teams. However, once the hard work of identifying and recruiting a trial subject has been accomplished, they must be retained and remain in compliance. More importantly, industry should be actively listening, engaging and garnering insights from the volunteers who are the foundation and purpose of all of the research. The engagement, continuous exchange of knowledge, retention of patients, and continued engagement throughout the life of a clinical trial is essential to have complete data sets for your analysis and subsequent filings. There are strategies, tools, and data-driven techniques such as social media platforms and mobile technology, empowered patient communities, and a more informed and diverse patient population that need to be understood and engaged. CHI’s 13th Annual “Patient Engagement, Enrollment and Retention through Communities and Technology” will cover the topics one should consider when planning and strategically implementing a patient engagement strategy and retention plan in the digital age.

Arrive early and attend Part 1 (Wed - Thurs): Enrollment Planning and Patient Recruitment

Final Agenda

Thursday, February 20

11:30 am Registration Open (Regency Rotunda)

Praxis 12:30 pm BRIDGING LUNCHEON CO-PRESENTATION: Putting Patients & Caregivers First: An In-Depth Look at Strategic Partnerships in Executing a Successful Clinical Trial

Rogers_SamanthaSamantha Rogers, Patient Recruitment & Retention Lead, Takeda

Tricia BarrettTricia Barrett, Senior Vice President, Managing Director, Praxis Communications, LLC

Join us as we pull back the curtain to review strategies from a case study that highlights a patient-centric approach to drug development. We’ll discuss how to craft a strategic plan that resonates with both the patient and caregiver. This session will focus on tactics that were successfully executed as well as mid-study adjustments that were implemented in order to optimize patient recruitment and retention.

1:00 Coffee and Dessert Break in the Exhibit Hall (Windermere Ballroom)BioTelResearch


2:00 Afternoon Plenary Keynotes (Regency Ballroom S)

3:10 Booth Crawl & Refreshment Break in the Exhibit Hall. Last Chance for Exhibit Viewing (Windermere Ballroom)

Regency Ballroom T

4:10 Chairperson’s Remarks

Chris Crucitti, Chief Commercial Officer, Signant Health

4:15 CO-PRESENTATION: Enable Empowered Patients in Clinical Trials by Integrating Health Literacy and Cultural Sensitivity

Myers_LaurieLaurie Myers, MBA, Global Health Literacy Director, Global Population Health, Merck & Co., Inc.

Staley_AliciaAlicia Staley, MBA, Trial Volunteer & Cancer Survivor

Health literacy is an essential tool to help empower patients to: find clinical trial information, understand the potential risks of a trial, know their commitment (time, visits), and improve the participation of underrepresented populations. This session will provide the perspectives of a patient advocate and a pharma health literacy leader, each of whom has been personally overwhelmed by clinical trial information. It will also highlight the importance of cultural sensitivity and of use of the “teach-back method” in reaching patients and training investigators.

4:45 CO-PRESENTATION: Partnering with Patients to Tackle Engagement Together

Saadat-Lajevardi_LeilyLeily Saadat-Lajevardi, Team Leader, Clinical Insights & Experience Group, Janssen R&D

Gregg_AlysonAlyson Gregg, MBA, Director, Patient Insights, Janssen R&D

As we know, the patient voice is critical to ensuring that the solutions that are put in place are meeting an actual need, alleviating a burden and/or are fit for purpose. In this presentation, we will discuss how we have adopted different methods to obtain that patient voice early across multiple therapeutic areas. We will also discuss what we have learned and what we have done as a result of these learnings to create a better experience for our most important stakeholders in clinical trials, the patients who volunteer their time and data for the better outcomes for all.

Medidata 5:15 Patient Centricity By Design: Clinical Trial Solutions Designed By Patients For Patients

Staley_AliciaAlicia Staley, Senior Director, Patient Engagemen, Medidata, a Dassault Systèmes company

Radcliffe_AngelaAngela Radcliffe, R&D Practice Lead, Capgemini Invent

Bernstein_LizaLiza Bernstein, Patient Advocate, Self

Patient advocates are partnering with Medidata as informed collaborators who can provide meaningful input into product design features and functionality that matter the most. Medidata has taken an innovative approach by engaging and collaborating with patient communities to infuse the patient perspective throughout the software development process. This session will review Medidata’s Patient Centricity By Design Framework and how incorporating patients into the product development process will help improve the overall patient experience.

Regency Ballroom T

5:45 Patients Embracing Artificial Intelligence and Relevant Technologies in Clinical Trials to Personalize Engagement and Do Benefit-Risk Assessment

Pallapothu_RajRaj Pallapothu, Professor, University of Texas-Dallas & Digital Health Industry Expert

Patients are ready to integrate new tech and AI into their healthcare experiences, alongside numerous other digital patient engagement technologies, when it comes to personalized patient engagement. Patient engagement, which prioritizes the patient experience during trials, removes obstacles to treatment and helps patients take more ownership over their health during the course of the study. So, the desire to connect with patients and solicit their feedback is there, but many trials struggle to find an efficient means to do so. In addition, developing a better trial design for patients and benefits were at the top of their lists. Because patients benefit from effective treatments while also bearing the risks, their perspectives must be at the heart of trial design and benefit-risk assessment.

6:00 CASE STUDY: Under-Represented Community Engagement to Reach, Raise Awareness and Educate on Clinical Trial Participation

Wilson KateKate Wilson, Associate Director, Feasibility, Enrollment & Retention Optimization (FERO), Global Clinical Operations, Biogen

tInvesting in relationships with trusted partners to enhance community engagement and participant outreach that raises awareness of clinical trial participation. However, beyond the hype are some operational challenges that must be understood before investing in digital approaches, technology or altering budgets/timelines with overly-optimistic expectations. This talk will share a specific application of traditional and digital engagement with under-represented patient communities to enhance awareness and education, ultimately to present research opportunities in these communities.

6:15 Networking Reception (Regency Rotunda)IBM-Watson-Health

7:15 Close of Day

Friday, February 21

7:15 am Registration Open (Regency Rotunda)

7:45 BREAKFAST PRESENTATION: Breaking Down the Roadblocks to Site Activation (Regency Ballroom T)

Johnston_JillJill Johnston President, Study Planning & Site Optimization, WCG

8:15 Session Break


8:20 Chairperson’s Remarks

Jim Lane, Chief Business Officer, Longboat Clinical

8:25 INTERACTIVE CO-PRESENTATION: Moving the Mountain: A Large Pharma Approach to Tech-Enabled Site and Patient Trial Engagement

Lewis_AprilApril Lewis, Senior Director, R&D Technology, GSK

Schantz_DougDoug Schantz, Executive Director, Clinical Operations, AstraZeneca

Holub_RoseRose Holub, Head, Regulatory Affairs & Compliance, Clinical Operations, Circuit Clinical

This presentation will review how large pharma is taking steps to undergo technology enablement of critical and strategic site and patient engagement strategies. AZ and GSK will discuss their approaches to site and patient technology modernization, including adoption strategies, data and system orchestration, and change management. 1) Expected improvement in pharma to site/patient engagement, 2) organizational challenges and successes in technology adoption, and 3) overview of blue-sky future state.

8:55 CO-PRESENTATION: The Mutual Benefits of Active Listening

Teufel_MicheleMichele Teufel, Patient and Site Engagement Lead, Development Operations, AstraZeneca

Linnell_JohnJohn Linnell, Clinical Trial Participant and Member of AZ’s Patient Partnership Program

This discussion will be an opportunity to provide details on the interactions we, Sponsors-Patients, have had over the years and how both AstraZeneca and the patients have benefited. How has listening to and understanding the patient enhanced AstraZeneca’s ability to help patients? Why does active listening allow for a mutually beneficial partnership between the patient and sponsor companies?

9:25 CASE STUDY: Collaborating with Advocacy Organizations to Integrate Patient Perspective into Research

McGowan_MaryMary McGowan, Executive Director, The Myositis Association

This talk will share the why and the how of the development of a training manual for home care nurses that integrated the patients’ perspective and experiences to enhance the clinicians’ understanding of the lived experience by someone who endures the pains and challenges that come with a myositis diagnosis. The manual includes details on the day to day activities of patients and care partners, what it’s like living with the disease, and information on how the disease impacts one’s life. This information was integrated into the routine nurse protocol training for the clinical trial. TMA will demonstrate how prospectively integrating this information into home nurses’ training process results in a better patient clinical trial experience.

9:55 Do You Hear What I Hear?: Applying Methodology and Partnering Technology for Optimal Patient EngagementCovance

Harris_MelissaMelissa Harris, Associate Director, Global Patient Recruitment and Engagement, Covance

Developing medicines using a patient-centric approach provides an opportunity to more closely meet patient needs and therefore improve their lives in meaningful ways.  However, unless we are asking them questions on what would help them participate in and stay in studies, and really listening, we will never get the protocol designs that we should.  During this presentation, we will share how Covance is establishing a new paradigm for patient centricity to drive improved trial recruitment and retention.  

10:25 Networking Coffee Break (Session Room Foyer)


10:55 Chairperson’s Remarks

Neil Weisman, President, Continuum Clinical

11:00 Partnering with Patient Advocacy Groups to Create Meaningful Patient Engagement across the Drug Development Continuum

Roman_ChristinaChristina Román, Senior Community Engagement Manager, Community Partnerships, Cystic Fibrosis Foundation

Including the patient perspective in drug development can improve study feasibility, reduce burden and ensure that research projects are directed toward questions that matter most to patients. This presentation will highlight innovative and practical approaches to developing collaborations between patients and the research community at every stage of drug development. In addition, the presentation will describe how patient advocacy groups can create and formalize opportunities for patients to meaningfully engage in research activities.

Trialscope 11:30 NEW: Roadblocks in a Patient's Clinical Trial Journey – and How Better Data Can Remove Them
Wenger_MichaelMike Wenger,Vice President, Patient Engagement,TrialScope
A patient's clinical trial journey is tricky to navigate.  They match to too many trials, struggle with eligibility, and never hear back. It’s a traffic jam: Trial sites are flooded with unqualified leads; sponsors must delay trials. Discover how advocates, sponsors, and recruitment partners can, with the right data, collaborate to help patients in their journey.


11:45 NEW: Selecting the Right Patient For Your Next Patient Voice Project

Powell_ValerieValerie Powell, MS, Vice President Research Services, HealthiVibe

Wouldn’t we all like to have a formula for finding the most ideal patient for our next engagement activity? In this presentation we’ll explore the three questions you need to ask of your project, and outline the five levels of patient expertise – each having distinct characteristics that, when leveraged effectively, provide just the right feedback you were hoping to glean. While pharma understands the value of patient insights, they don’t always know the most effective way to go about collecting it. This presentation is designed to share real world knowledge about how to identify and leverage the most appropriate patients for your insight work.


Chairperson’s Remarks

Neil Weisman, President, Continuum Clinical

12:05pm The Connected Patient: A “One Stop Shop” for Trial Information and Data

McBride_MeganMegan McBride, MPH, Associate Director, Janssen Clinical Innovation, GCDO, R&D, Janssen, The Pharmaceutical Companies of Johnson & Johnson

Learn how we are creating a connected experience for trial participants before, during and after the trial where patients can access meaningful information, their individual data to share with their EHR, aggregate study results and provide ongoing feedback and insights to ensure a better experience for patients, caregivers and the site teams. Explore the possibilities to remain connected via communities to raise awareness around trials. The audience can gain insights as to the ins and outs of how we managed to create a platform to share data directly with patients– from legal, privacy, regulatory and other key stakeholder hurdles to our vision for broadening the scope of data sharing across industry.

12:35 INTERACTIVE PANEL: Translating Virtual to Reality: Decentralized Trial Transformation

Myles_JaneModerator: Jane Myles, Head, Operational Intelligence and Innovation, Roche

Forman_DarcyPanelists: Darcy Forman, Vice President, Clinical Operations, Science37

Kadhim_HassanHassan Kadhim, Director, Clinical Trial Business Capabilities, GCO, Bristol-Myers Squibb

Melvin_CarrieCarrie Melvin, Vice President, Global Clinical Sciences and Delivery TA Head of Oncology, GSK/TESARO

McBride_MeganMegan McBride, MPH, Associate Director, Janssen Clinical Innovation, GCDO, R&D, Janssen, The Pharmaceutical Companies of Johnson & Johnson

Our expert panel will include a variety of perspectives and the aim is to provide pragmatic solutions and actionable advice to make virtual trials a realistic option for your study needs. We’ll discuss strategic and tactical needs to help you determine how to navigate and implement virtual and decentralized options to drive your pipeline goals. Topics to be discussed include:

  • Discuss the settings for virtual trials and help define best fit options for study needs.
  • How and when does the regulatory strategy get set to enable a successful filing?
  • What are the challenges to drive both site and patient participation in virtual trials?
  • What are the timeline and cost differences in planning for and executing virtual trial components?
  • What are the key lessons learned from those who have been early adopters and champions?

1:05 Transition to Lunch

Teckro 1:10 SCOPE Send Off Luncheon Presentation: Is Your Paper Protocol Really Fit for Purpose?

Brendan Buckley, MD, DPhil, Chief Medical Officer, Teckro

When did you last use a telephone directory for a restaurant booking? It might seem absurd to flip through a dated paper directory when the latest information is always searchable online. Why, then, are we still using paper protocols to manage clinical trials? It’s time we bring clinical trials into the digital era. Join this session to find out how to transform your protocol into actionable data for research staff, study teams and CROs.

1:40 Closing Remarks

1:45 SCOPE Summit 2020 Adjourns


Tuesday Evening, Wednesday Morning and Thursday Afternoon Plenary Keynotes Featuring:

SCOPE’s 2020 Participant Engagement Award, in Memory of Jerry Matczak
Patient Perspectives as an Input to Feasibility and Clinical Trial Design
Digital Trends that Are Changing Clinical Research
Health Literacy Throughout Drug Development – Why It Matters to Pharma and to Patients
Implementing an Innovation Methodology to Accelerate Clinical Trial Innovation within Your Organization

For more details on the Plenary Keynotes:
For more details on the Participant Engagement Award:


Concurrent breakout discussion groups are interactive, guided discussions hosted by a facilitator or set of co-facilitators to discuss some of the key issues presented earlier in the day’s sessions. Delegates will join a table of interest and become an active part of the discussion at hand. Bring your pharma, biotech, CRO, site, hospital or patient perspective to each of the discussions below. To get the most out of this interactive session and format please come prepared to share examples from your work, vet some ideas with your peers, be a part of group interrogation and problem solving, and, most importantly, participate in active idea sharing:

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