DAY TWO | WEDNESDAY, JULY 31
8:30 REGISTRATION & COFFEE
9:00 CHAIRPERSON’S OPENING REMARKS
9:15 ADVOCACY TIME TRAVEL: PATIENT ADVOCACY OF YESTERDAY, TODAY AND TOMORROW
Patients have been at the forefront of many of healthcare’s most historic moments—not just as subjects but also as catalysts for change. Some of today’s advocates look to the early ACT UP years for inspiration; others turn to blueprints established by pioneers like Abbey Meyers or Kathy Guisti. In this session we’ll explore how patient advocate archetypes—–policy-actor, creator, innovator, social justice warrior and champion of science—have emerged over time and dig into how social determinants of health, politics of representation and even climate change will influence the advocates of the future.
Keri McDonough, Patient Advocacy Lead, SYNEOS HEALTH COMMUNICATIONS
10:00 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
10:45 COFFEE & NETWORKING BREAK
11:15 COORDINATING PATIENT SUPPORT EFFORTS WHILE NAVIGATING INSURANCE COVERAGE OBSTACLES
Health insurance coverage challenges continue to be a top concern among advocacy stakeholders and are contributing to the discussion around pharmaceutical pricing and patient support systems. The complexities of the healthcare reimbursement landscape can be a constant source of confusion for many patients and it is critical for advocates to have a thorough understanding of the initiatives and resources manufacturers have in place to assist in ensuring easy access to products and care. Advocacy groups and internal advocates are looking to collaborate and engage in constructive conversations that center on improving reimbursement processes as a strategy to potentially increase overall patient access to needed therapies.
- Understanding unique patient community needs
- Analyzing appropriate use of step therapy
- Access for socioeconomically diverse groups
Tonya Winders, ALLERGY & ASTHMA NETWORK
Jennifer Mills, FOUNDATION MEDICINE
12:00 LUNCHEON FOR ALL SPEAKERS, SPONSORS & ATTENDEES
1:00 PANEL: STRATEGIES FOR ADDRESSING INDUSTRY SCRUTINY AROUND PRICING AND PATIENT ACCESS
- Partnering with advocacy groups to alleviate rhetoric concerns
- Enhanced information and support for patients and care partners
- Clarifying relationships with government bodies and foundations
- Addressing the impact of negative patient perceptions
Paul Tyahla, Senior Strategist, Reputation and Risk Management Practice
Jaye Bea Smalley, CELGENE CORPORATION
Sonali Chopra, GENENTECH, INC
1:45 BREAKOUT DISCUSSION GROUPS: MITIGATING STAKEHOLDER COMPLIANCE CONCERNS
- Compliant methods for partnering with nonprofits and foundations
- Engaging with advocacy colleagues to alleviate regulatory difficulties
- Communicating compliance navigation strategies to patient communities
Jaye Bea Smalley, CELGENE CORPORATION
Trisha Devlin, DERMIRA, INC.
ENHANCING INTERACTIONS BETWEEN INDUSTRY AND PATIENT ADVOCACY PROFESSIONALS
Transparency within advocate partnerships establishes the framework for continuous collaborations which are both successful and constructive. By seeking out early opportunities for connecting and participating in aligned efforts, advocacy leaders from pharmaceutical industries, in particular those in internal supportive roles, including communications, marketing, and education, and patient groups are able to connect and truly articulate individual and unique needs. Engaging in a close analysis of the risks and challenges associated with diverse partnerships and maintaining clarity in communications will positions advocacy professionals to align with one another to address challenges that arise with various stakeholders.
- Recognizing opportunities for connecting with new stakeholders
- Focused communication strategies to eliminate patient confusion
- Understanding barriers to creating greater access to care
2:15 HORIZON PHARMA PLC PRESENTATION:
Kristina Davidson, Director, Global Patient Advocacy
2:45 COMMUNITY ONCOLOGY ALLIANCE PRESENTATION:
Rose Gerber, Director of Patient Advocacy & Education
3:15 COFFEE & NETWORKING BREAK
3:30 PANEL: IN-DEPTH FEEDBACK EXCHANGE BETWEEN LIFE SCIENCE ADVOCACY ASSOCIATES
With divergent perspectives and ongoing difficulties emerging among all relevant stakeholders, the creation of strategic alliances among individuals who share common interests are of utmost importance. As transparency around pricing, access, and reimbursement is emphasized, the definition of transparency and subsequent dialogue must also be developed to further improve advocacy relations and patient engagement. The complexities of maintaining and improving an effective model to support access to care for patients will be discussed with an emphasis on opportunities for advocacy endeavors while avoiding obstacles.
- Partnership success stories and strategies
- Exploring diverse collaboration challenges
- Innovative patient engagement efforts
Kristina Davidson, HORIZON PHARMA PLC
Wendy Schrag, FRESENIUS MEDICAL CARE
Wendy White, VITRISA THERAPEUTICS
Terry-Ann Francis, MERCK & CO., INC.
4:15 CASE STUDY: OPTIMIZING PATIENT SUPPORT THROUGH SOCIAL MEDIA MANAGEMENT PRACTICES
Patient engagement initiatives have grown exponentially in complexity since outreach through online platforms such as Facebook and blogs has become a common source of engagement. Social media has offered expanded initiatives and extensive opportunities for information exchange and product exposure; however, advocacy executives are increasingly challenged to ensure that information accessed by patients through online avenues provides accurate and compliant data. Understanding how to sift through the messaging and the process of reviewing online dialogue is a key concern and internal and external advocacy professionals must align to assist patients in locating strong sources of information, offer guidance while managing emotions and opinions on public platforms, and unite to improve patient experiences.
ADVOCACY GROUP PERSPECTIVE
- Addressing common patient complaints through social media
- Facilitating educational guidance through digital advocacy
- Exchanging best practices for self-guided online research
Allie Bahn, Global Outreach and Education Coordinator, ALLERGY & ASTHMA NETWORK
4:45 CLOSING REMARKS & CONFERENCE CONCLUSION