Patient Advocacy and Digital Transformation: Why and How

Session 1: Setting up new patient-centric registries for advocacy organizations

Session 2: Patient monitoring and care management for patient advocacy organizations

Session 3: Pharma-sponsored research projects within patient advocacy organizations

Session 1: Setting up new patient-centric registries for advocacy organizations

New registries are emerging that are often orchestrated by independent third parties, including patient advocacy organizations. Unlike registries driven by providers and academic medical centers, these patient-driven registries aggregate data from several sources. A few highlights in this new generation of registries include:

Patient Enrollment: Patient-focused or participant-focused registries are not enrolling patients solely through a provider or academic medical center instead they enroll patients directly or through a hybrid approach.

Data type: Patient-focused registries are pulling data from electronic medical records, along with phenotypical information and biospecimens.

Longitudinal data collection: Patient-focused registries are dynamically collecting information over the long term to create longitudinal data, which is critically important for many diseases.

Cure Focus: Patient-focused registries are shifting the fundamental goal of registries from collecting aggregate information to identifying disease causality and developing cures.

Join this session to learn:

• What is a registry
• What Advocacy organizations need in a registry
• How registries should be a part of research missions for advocacy organizations
• Evaluate your current registries – what good registries look like
• Old vs new registries – changing needs and technological landscape

Meet the Speaker:

Paul Strumph
Board of Directors, Myasthenia Gravis Foundation of America; Consulting Chief Medical Officer, Diabetes, Metabolism, and Endocrinology

Paul Strumph has served on the Board of Directors of the College Diabetes Network since 2016 and the Myasthenia Gravis Foundation of America since 2020. At the latter, he is the volunteer lead for the MGFA Registry, Chairs the Governance & Nominating Committee, and received the 2022 Impact Award which recognizes a volunteer who has changed the trajectory of the MGFA. The winner of this award has made an extraordinary impact on the organization through exceptional leadership, collaboration, innovation, and dedication to the MGFA.

He is a consultant in Pharmaceutical Research and Development with over 25 years of experience in the field. Previous positions include Chief Medical Officer at Metavant Sciences; Vice President, Clinical Development at Lexicon Pharmaceuticals, where he led global clinical development from early phase 2 work through successful NDA and MAA filings achieving EU approval of sotagliflozin, a first in class dual SGLT1 and SGLT2 inhibitor developed as an oral adjunct to insulin in type 1 diabetes; North American Regional Chief Medical Officer at Quintiles (now IQVIA), where he was also founder and Chair of the Diabetes Center of Excellence and served as Therapeutic Strategy Head for the Cardiovascular and Metabolic Therapy Area; and Chief Medical Officer at the non-profit Juvenile Diabetes Research Foundation (JDRF). Earlier in his career, Paul held roles of increasing responsibility at GlaxoSmithKline, Merck KGaA/EMD, and Bristol Myers Squibb & Co.

Session 2: Patient monitoring and care management for patient advocacy organizations

There is a lack of technologically advanced tools available to several high-risk patient populations such as prostate cancer patients and specifically Veterans with prostate cancer. So, the need to educate these patients and caregivers on screening policies, treatment options, mental health supportive services, navigation of the medical system both within and through the Community Care Network, along with post-care monitoring and any required intervention to address toxic events cannot be overstated.

Join this session to learn:

• How to partner with both – clinicians and pharma/life science companies
• Understanding the Patient Perspective – how to leverage digital health tools
• The value of simple digital health tools that can bring about a dramatic change in the quality of life
• Identifying an underserved patient population group and leveraging digital health to provide them with better and more personalized tools that didn’t exist before

Meet the speaker:

Michael Crosby
Founder and CEO, Veterans Prostate Cancer Awareness
CDR Crosby is the founder and CEO of Veterans Prostate Cancer Awareness (VPCa) a 501(c)3 non-profit organization formed in 2016 when CDR Crosby recognized a need to raise awareness of prostate cancer among the Veteran population. VPCa was formed to provide prostate cancer educational resources and conduct awareness activities in support of Veterans and Active military populations. The focus of the effort is to highlight the need to screen for the disease, support men in their treatment decisions, and promote the newest technology for the treatment and cure of prostate cancer.

There are over 500,000 Veterans in the Veterans Healthcare Administration (VHA) with over 16,000 of those men dealing with a metastatic form of the disease. With over 15,000 new diagnoses each year the need to educate men on how and when to screen for the disease is a critical undertaking. Since forming VPCa the firm has raised over $1M in donations and has educated thousands of Veterans on the need to screen for prostate cancer earlier than the general population. We continue to look for new and innovative ways to raise awareness and educate our nation’s Heroes.

Session 3: Pharma-sponsored research projects within patient advocacy organizations

Having the patient’s voice heard in all aspects of medication development, regulatory issues, and discussions about chronic disease management is imperative for improving the quality of life for patients. This focus creates a unique opportunity to influence Pharma companies to fund research projects with a holistic patient-centered approach.

Join this session to learn:

• How to get potential sponsors to fund research projects and improve patient outcomes
• How data-driven digital technology serves as an enabler for generating funds from Pharma
• How to effectively partner with Pharma and Life Sciences companies
• Understanding the value of powerful Health Tools that improve quality of life substantially

Meet the speaker:

Tonya Winders, MBA,
President and Chief Executive Officer, Allergy and Asthma Network
Tonya first started serving as an advocate when as a child she stood up for herself and others on the playground. In 2004, she learned the importance of patient empowerment when she overcame a rare form of cancer. Today, Tonya has more than 20 years of experience in leadership roles within the allergy and asthma industry.

From sales and marketing leadership to managed markets access, she works tirelessly to ensure patients have access to effective diagnostic and treatment tools. Tonya serves on several expert panels including Global Initiative for Asthma (GINA) and the American Thoracic Society Public Advisory Roundtable. She serves as Chair of the Board of Directors of the American Respiratory Care Foundation and is the current President of the Global Allergy & Airways Patient Platform, representing 60+ respiratory patient organizations throughout the world.

Tonya is so passionate about her work in part because she is the mother of five children, four of whom have asthma and/or allergies. She is a fierce patient advocate who has authored more than 30 peer-reviewed publications and speaks globally to ensure the patient voice is always valued.