Bringing awareness to regulatory patient engagement is a timely matter for advocates. Discuss the importance of getting in touch with what regulators are looking for and ways to best meet those needs.
- Assess ways to engage with regulators including FDA
- Consider approaches for compliantly helping patients understand what to expect when meeting with regulators
- Partner to ensure initiatives are focused on fulfilling 'knowledge gaps'
Initiatives launched to empower supportive communities get better with key learnings from every patient we engage with. Learn more about working as an N-of-1 and maintaining the intricacies and special spark as you grow.
- Gain the business acumen needed to connect patient insights to mission and goals of your organization
- Engage clinical trial sites in helping to educate patients on evaluating risks and challenges accompanying a clinical trial
- How are we going to do patient focused drug development right?
Explore why caregivers are often a forgotten voice, despite great strides in patient involvement and engagement.
- Understand the importance of making health information accessible, especially in the digital era
- Discover best practices to become an ‘accessible by default’ partner
As cell and gene therapies (CGTs) expand rapidly, with 10-20 new FDA approvals expected annually starting in 2025, sponsors face a critical challenge: maintaining participant engagement throughout long-term follow-up (LTFU) studies that can span up to 15 years after trials end. This extended monitoring period is essential to meet regulatory requirements for assessing long-term safety and efficacy. Attendees in this session will be prepared to:
- Understand the need for novel, patient-centric approaches for sustaining long-term participant engagement beyond clinical trial completion.
- Establish patient engagement functions as strategic partners for designing disease-specific, participant-focused long-term engagement strategies.
- Co-create specific LTFU plans for various conditions and novel CGTs treatments that optimize on-going engagement and minimize participant burden.
Hear a firsthand case study demonstrating how three stakeholder groups—nonprofit organizations, academia, and industry—convened to explore one molecule’s journey from being originally studied only for use in adult cancer to a registrational study in a pediatric cancer. Learn how an innovative, one-day workshop led to the co-creation of a new framework for multistakeholder collaboration, detailed in a white paper focused on the people, processes, and partnerships critical to advancing research in pediatric cancer and other rare diseases.
Explore how plain language summaries can be co-created with patient communities and potentially boost the impact of research.
- Involve patient communities in the development of your strategy for providing feedback
- Explore ways for patients to provide feedback on content and writing
- Assess ways that patient communities use social media to locate valuable information
Through a case study example, discover how BMS’ Patient Experience Engagement Resource (PEER) program works with patient communities to integrate advocate feedback into drug development and commercialization processes.
- Understand how to drive patient-focused programmatic change
- See how PEER program feedback and inclusion of patient voice have resulted in real changes across development and regulatory requirements
- Explore opportunities for measurement and sharing of patient insights across the enterprise
This session explores collaboration with leading national patient advocacy organizations, ACS, NMSS, and ADA on local health equity work in collaboration with community based organizations.
- Understand work with the ADA in Birmingham, highlighting collaborative efforts to address patient access issues from screening to specialty care
- Explore the initiatives undertaken with NMSS to tackle neurology desert areas, ensuring access to quality care and support for individuals affected by Multiple Sclerosis
- Learn about the collaborative work with ACS to advance cancer health equity, aiming to reduce disparities in cancer prevention, treatment, policy and support services
Advance Patient Insights to Inform Decision Making
- Benefit from hearing about Keri’s 30 year career journey of guiding collaborative teams and partnerships to encourage a patient-centric culture across the healthcare industry.
- Gain insight into launching approaches for patient engagement and building centers of excellence focused on patients
- Examine methods for pulling voices that are not currently connected to communities
- Build skills and expand your career path toward measuring value
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
Gain valuable feedback from patients/caregivers/patient advocacy organizations about how to improve collaboration with life sciences companies.
- Identify what you are looking for that you may not currently be receiving and discuss opportunities for enrichment in the near future
- Delve into examples of positive experiences
- Break down examples of difficult situations where trial outcomes were not as positive as hoped for and situations where things were less effective
- Facilitate newsletters, individual trial results, ad boards and other vehicles to share feedback with patients about how insights are used
Walk through a case study (including challenges) involved in an initiative focused on disease awareness and empowerment.
- Collaborate with commercial marketing teams on unbranded disease awareness campaigns
- Ensure patient voice is reflected in product launch
- Build authentic messaging that resonates with and represents the true needs of the patient community
Design thinking is a valuable tool for addressing the needs of individuals moving out of treatment range. Learn more about how to serve unmet patient needs for underserved communities.
- Listen to the needs of patients transitioning to adulthood
- Partner and share data with industry, advocates and patient groups to help underserved communities
- Create toolkits for those moving out of treatment range to level up the quality of their care
A discussion about the outcomes that matter most to patients is helpful when designing adaptive protocols. By properly gathering patient suggestions, you can more efficiently prioritize ideas.
- Collaborate with clinical operations and regulatory teams to implement changes to study protocol as suggested by patients
- Devise a plan for closure when the trial ends including information for the patient about recommended changes implemented/not implemented including patient gratitude programs
- Explore patient’s technology preferences