Patient Advocacy and Digital Transformation: Why and How

Patient stories are powerful advocacy tools. We are now in the age that enables us to use advanced technology to unfold these stories – as a result, the newest patient-reported, evidence-based tools allow patient advocacy groups to capture analytics and insights into the journey of each patient and leverage these data points to deliver better care, helping patients, their families, and care teams.

Watch this unique on-demand 2-hour training by Alira Health to learn more about how technology better catalyzes patient outcomes.

The training consists of 3 individual sessions. Use the timestamps below to navigation the recording.

• Session 1 – 0:7:00 – Setting up new patient-centric registries for advocacy organizations
• Session 2 – 0:50:00 – Patient monitoring and care management for patient advocacy organizations
• Session 3 – 1:22:00 – 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. 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, North American Regional Chief Medical Officer at Quintiles (now IQVIA), 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.

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.