A one mile guided walk taking in the sights of the Boston Common, Beacon Hill and Back Bay amid the Boston Public Garden botanical display and swan boats. Meet in the hotel lobby.
Put the Patient First from Pre-Clinical Through Post Approval What does it truly mean to provide end to end support for the patient? Evaluate your patient goals and tone and discuss innovative ways to move from vision to reality.
- Identify what exactly it means to start with the patient including examples
- Define ways to build resources and functional expertise as well as build momentum in your organization for identifying and addressing patient needs
- Conceptualize how the mission of your organization aligns with the patient
There are broad opportunities to improve working with patients in preclinical research. Learn more about when patient advocacy starts and what early engagement looks like.
- Review patient engagement activities in preclinical research
- Identify biomarkers and preclinical studies for potential therapeutic targets
- Discover unmet needs and create a plan for jumpstarting research
It’s never too early to begin educating and working with legal and compliance partners. Learn about the top compliance risks involved in working with patients and advocacy organizations and how to work together with partners to mitigate risk.
- Shape a code of conduct around patient advocacy interactions
- Engage patient communities compliantly prior to public disclosure of indications or assets and discuss scenarios for compliantly sharing clinical trial details
- Outline the top risks in working with patients and advocates
Discussing realistic expectations for how a relationship might work is a great place to start. One of the keys to success is to establish transparency in communication at the earliest opportunity.
- Review examples of what a “good” relationship looks like
- Break down examples of situations where things were less effective and lessons learned for the future
- Facilitate newsletters, individual trial results, ad boards and other vehicles to share feedback with patients about how insights are used
- Kathleen FlynnChief Executive OfficerNational Tay-Sachs & Allied Diseases Association
- Pat FurlongFounding President & Chief Executive OfficerParent Project Muscular Dystrophy
- Wendy ErlerVP, Global Head Patient Experience, Insights and Patient AdvocacyAlexion
- Louise VetterChief Executive OfficerHuntington’s Disease Society of America
Ensuring patients have access to novel therapies continues to remain an increasing challenge. Join us for an informative presentation where we will investigate ways to provide education for patients and caregivers about gaining medical coverage while also maintaining compliance.
- Understand the barriers to entry that must be resolved for a novel therapy to be commercially viable to niche patient populations
- Identify how to properly engage with patients and patient advocacy groups to understand the patients’ perspective
- Integrate compliant patient support programs developed to help manage access challenges
Do you understand patients’ greatest concerns about access? There is an opportunity for compliant partnership with patient communities to improve health literacy and understanding of copays and other key issues.
- Characterize relationships with patient groups pre and post product launch
- Ensure patients are educated to advocate for themselves and understand rights with health insurers
- Learn about collaborative group initiatives working on advocating for access
Patient advocacy leaders are called to advance their function through multiple phases: often building it from the ground up and then shepherding it through major growth, acquisition, and divestitures. In our fast paced sector, your role is going to see major change in both the short and long term.
- Maintain flexibility when making choices about your career path
- Take risks in new disease areas/new technology platforms
- Prepare different skill sets and needs at different phases of the advocacy function
Our life sciences industry has a tremendous role in developing relationships with diverse patient populations. Discuss current challenges and opportunities for reaching underserved populations.
- Identify collaborative partnerships with health equity focused patient organizations
- Discuss challenges that occur in specific disease areas
- Improve cultural outreach and the impact of clinical trial awareness and education
- Identify social determinants which may prevent access
Defining the principles and components of what it really means to deliver equitable care is the first step toward making progress. Learn more about the role cultural humility plays in improving health communication.
- Outline steps to incorporate the values of a specific patient community
- Translate how these values impact how health information is received and acted upon
- Explore the ways cultural humility helps to counteract bias and acknowledge that individuals, families and communities are experts of their own lived experiences
The rules, regulations and societal customs for patient engagement are different in every country and geographic region. Between new clinical trial regulations in Europe and varying drug approval processes globally, a whole new toolkit is required to maintain successful engagement on an international basis.
- Focus on what you can do versus what you can’t do and learn from what others have experienced in recent launches
- Grasp the keys to engaging with EU HTA and EU patient engagement companies
- Leverage your corporate network working in various countries
- Discuss ideas for addressing health literacy ex US
- Shannon AltimariGlobal Head of Advocacy to Outcomes, OncologyGSK
- Natacha RaphaelRegional Head, Corporate Affairs & Patient Advocacy, Intercontinental RegionBiogen
- Durhane Wong-RiegerChair of Rare Disease International, Vice-Chair of Asia Pacific Rare Disease International, Treasurer of United Nations Nongovernmental Organization for Rare Diseases, President of Canadian Organization for Rare Disorders
Key strategies for establishing buy-in from our clinical teams and Incorporating the patient voice in clinical trials are highlighted.
- Utilize the patient voice when establishing clinical endpoints
- Clinical trial patient education, recruitment and retention
- Ask patients for input on how to improve consent process
- Regan ShermanDirector Patient AdvocacyEntrada Therapeutics.
- Robyn BentRN, MS, CAPT, U.S. Public Health Service, Director, CDER PFDD Program Center for Drug Evaluation and Research, Office of the Center DirectorU.S. Food and Drug Administration
- Jennifer BonfriscoCEO/FounderCorlexia Clinical Services
- Mark DantChairman of BoardEveryLife Foundation
Establishing meaningful and trusting partnerships with patients can be transformative for the business and the culture. What’s worked? What hasn’t? Where are the opportunities to build?
- Define meaningful, trusting and rewarding partnerships from the patient perspective
- Share mechanics of the collaboration from contracting and compensation, to language, health literacy and the roadmap in therapeutic development
- Discuss examples of thinking with patients throughout the development and product lifecycle
As many organizations are evolving & expanding the role of Patient Advocacy, many are still trying to uncover key steps to implement a strategic Patient Advocacy framework across the organization. Gain tips for creating and communicating a strategic plan to engage the patient community and communicate the patient voice across internal cross-functional partners.
- Start with the end in mind: Understanding what’s important to the patient community as well as internal stakeholders
- Communicating the value of Patient Advocacy across the organization
- Designing a framework that brings value to the patient community, the patient organizations and internal collaborative partners
The world has shifted. Technology, changes in the regulatory space, along with increasingly connected patient communities have empowered individuals to speak out about their own care and health, challenging the way treatments are discovered, tested and made available. How do we evolve to have a patient centric company culture?
- Hear one companies approach
- Explore patient centric initiatives, their impact and lessons learned
- Learn about tools and resources that have helped one company advance patient centricity