DAY ONE | TUESDAY, JULY 30
8:00 REGISTRATION & WELCOME COFFEE
8:45 CHAIRPERSON’S OPENING REMARKS
Marissa Magnetti, Senior Advocacy Strategist, SYNEOS HEALTH COMMUNICATIONS
9:00 OPENING ICEBREAKER
Terry-Ann Francis, Global Professional Relations and Independent Medical Education, Global Medical Affairs
MERCK & CO., INC.
9:15 ASSESSING INNOVATIVE ADVOCACY EFFORTS
Progressive drug management models, clinical trials, and patient support tools are continually updated and expanded to provide improved patient care options while aligning with regulatory expectations. It is necessary for pharmaceutical partners to develop a strategic advocacy agenda that will progress legislative policies which support patients’ access to innovative therapies, unique clinical trials, and more exhaustive information streams. In an effort for continued growth, partnerships between manufacturers and advocates must continue to evolve to allow for engagement and open lines of communication regarding advocacy in the commercial, medical, and clinical spaces.
- Medication management access and pricing challenges
- Expanded advocacy groups to meet more diverse patient groups
- Reviewing data collections and employing new analysis methods
Kristina Davidson, Director, Global Patient Advocacy, HORIZON PHARMA
10:00 ENSURING PATIENT-CENTRIC SUPPORT BY ALIGNING MESSAGING BETWEEN PHARMA & ADVOCACY GROUPS
Instilling patient-centricity into the advocacy model and actively identifying evolving populations creates opportunities to more clearly understand diverse methods for supporting patients. By expanding partnerships internally and externally, patients’ healthcare is improved and the opportunity for more interaction with healthcare professionals, as well as education surrounding pricing, financial support, healthcare advisory, and clinical trials is expanded. Partnering with compliance teams at the outset to address ongoing challenges or ethical concerns that arise is a key component to understanding appropriate compliant interactions.
Hope Ventricelli, Senior Event Manager, CISCRP
10:30 COFFEE & NETWORKING BREAK
11:00 PANEL: IMPROVED INFORMATION EXCHANGE BETWEEN FDA, INDUSTRY, AND ADVOCATE PARTNERS
As a result of the consistent evolution taking place within the advocacy landscape, there is a need for sharpened clarity and increased communication between advocacy stakeholders and related government organizations, to gain deeper insight into current and developing opportunities to partner. The most significant advocacy challenges and changes that are taking place must be illuminated through updates shared by industry professionals from a variety of sectors within patient engagement and varied healthcare divisions at the FDA. With upgraded outreach to patient communities highlighted as an integral component of the strategy, advocacy teams are working to identify and understand opportunities for enhanced patient assistance and support as well as novel ways of interacting.
MODERATOR: Fran Kochman, ALNYLAM PHARMACEUTICALS
Steven Silvestri, EVERYLIFE FOUNDATION FOR RARE DISEASES
Tonya Winders, ALLERGY & ASTHMA NETWORK
Jaye Bea Smalley, CELGENE CORPORATION
11:45 FDA FIRESIDE CHAT: FOCUSING ON INNOVATIVE PATIENT ENGAGEMENT INITIATIVES
Through research and exploration into new and innovative opportunities for engagement, a thought leader from the FDA will share insights and updates into current advocacy focused programs. A deep dive into existing efforts that are enhancing patient engagement will strengthen advocacy relations, allow information exchange, and foster positive partnerships between leaders from pharmaceutical companies and advocacy groups. As activities are streamlined and coordinated across the healthcare industry, advocacy professionals must align to ensure that leading-edge patient efforts remain at the center of the outreach strategy.
Samir Shaikh, Deputy Director, Patient Affairs, FOOD AND DRUG ADMINISTRATION
12:30 LUNCHEON FOR ALL SPEAKERS, SPONSORS & ATTENDEES
1:30 – 2:30 ASSESSING METHODS FOR QUANTIFYING RESULTS TO ESTABLISH SUCCESSFUL MEASURES
- Outline metrics utilized to measure initiative’s success
- Determining appropriate data sources for analyses
- Evaluating the impact of analytics on advocacy departments
1:30 BIOMARIN PHARMACEUTICAL INC. CASE STUDY:
Michael Bodulow, Senior Specialist, Patient Advocacy
2:00 CARDINAL HEALTH CASE STUDY:
Tara Herington, Vice President
2:30 EFFECTIVELY CONVEYING CLINICAL AND RESEARCH DATA
As pharmaceutical and biotechnology corporations face greater levels of demand for transparency, the need for sharing research data and clinical outcomes has become increasingly relevant, with many patients and advocacy groups requesting summarized trial and product information not previously disclosed. These types of requests can be a cause for concern for advocacy executives, from intellectual property considerations surrounding research, to the impact of study disclosure on shareholder value where results could be interpreted negatively. Striking the delicate balance of transparency and risk management is essential for advocacy executives in order to foster positive and collaborative relations with external stakeholders while at the same time supporting the goals of the corporation.
Sonali Chopra, Director, Alliance and Advocacy Relations, GENENTECH, INC.
3:15 COFFEE & NETWORKING BREAK
3:30 BREAKOUT SESSION: BRIDGING THE GAP BETWEEN DISTINCT PATIENT ADVOCATE COMMUNITIES
In today’s environment, some advocacy associations have created particular methods for engaging patient communities and offering support though uncommon means. Advocacy executives continue to explore means for creating appropriate alignment between differing organizations to utilize inventive methods from the collective group. By assessing approaches from diverse groups and exploring successful strategies from advocacy colleagues, partners within the industry are able to find common ground and share ideas which vary based on company size, location, focused patient population, and other key determinants.
Group 1: Rare disease – David Cooling, GENENTECH, INC.
Group 2: Global outreach – Hope Ventricelli, CISCRP
Group 3: Minority health – Adam Taliaferro, BMS
Group 4: Caregiver support – John Funderburk, ALZHEIMER’S ASSOCIATION
4:00 STRATEGIC APPROACHES FOR IMPROVING DIVERSITY IN PATIENT INCLUSIVITY & REPRESENTATION
In order to address the complexities and unique challenges of distinct patient populations, advocacy professionals must work together to establish stronger patient engagement initiatives to create a more diverse and patient-centric focus. Individualized and regionally specific collaborative activities are devised and executed with purpose and are at the center of these pursuits, which create opportunities for more accessible healthcare options through additional attention to patient populations representing greater demographic diversity. The creation of more robust alliances, as well as more targeted approaches and an emphasis on minority health, will enhance opportunities for varied populations to be better understood and for partnerships between all advocacy stakeholders to create effective change.
Adam Taliaferro, State Advocacy and Alliance Development, BMS
4:30 PANEL: INCREASING ENGAGEMENT IN ADVOCACY GROUP INTERACTION & SHARED LEARNING EXPERIENCES
Pharmaceutical advocacy teams must continue to examine new and ongoing challenges, participate in active and collaborative knowledge transfer, and establish flexible procedures to ensure that best practices for developing diverse engagement experiences are utilized across multiple patient groups. Through these shared interactions, including educational modeling and coaching, advocacy professionals can strategize for access to additional support or financing from upper management, as well as develop strategies for patient access and recruitment in clinical studies. This session will focus on developing partnerships to share perspectives from a range of patient groups in both rare and non-rare disease areas and consistently expanding to create more inclusive patient representation.
- Expanding outreach to diverse patient populations to maximize access
- Strengthening alliances to increase revenue and corporate value.
- Opportunities to develop mental health and caregiver advocacy programs
- Evaluating and applying best practices from rare disease patient groups
Monica Weldon, BRIDGE THE GAP, SYNGAP EDUCATION AND RESEARCH FOUNDATION
Juddson Rupp, MILESTONE PHARMACEUTICALS
David Cooling, GENENTECH, INC
Hope Ventricelli, CISCRP
Todd Bledsoe, NEUROCRINE BIOSCIENCES
5:30 CLOSING REMARKS & DAY 1 CONCLUSION
6:15 CONTINUED NETWORKING: FACILITATED GROUP DINNERS