Conference Schedule

Kay Matthews founded the Shades of Blue Project in 2016 shortly after the stillborn death of her daughter Troya Simone. As she built the Shades of Blue Project, she understood that she was not alone in her experience and that maternal morbidity rates of Black women were only worsening. Also true was that Black maternal mental health support systems were nonexistent, poorly managed, or resulted in Black mothers having their children removed from their homes. This lack of Black maternal mental health care and continued ill treatment of Black birthing individuals spurred Matthews to create the I.N.S.P.I.R.E. Method Training. A unique training based on compassion, I.N.S.P.I.R.E. is specific to women of color and minorities and can be implemented by doulas, midwives, clinicians, and those facilitating support groups. Kay founded Black Maternal Mental Health Week in 2018 and is a fierce advocate of Black birthing individuals across the world.

Patient communities can have enormous influence in regulatory review of new drugs. By sharing their perspective on disease burden, how disease progression is measured and the risk-benefit ratio of potential new therapies, patients and their loved ones provide invaluable insight to regulatory decision makers. Patient advocacy leaders can ensure the patient voice is shared effectively with regulators by working earlier and more closely with regulatory colleagues. Benefit from hearing directly from those who have experience aligning patient engagement with regulatory strategy.

  • Understand the regulatory timeline and how and when to demonstrate how conditions impact daily life and top priorities for treatment goals
  • Identify the appropriate channels and preparation needed to effectively share patient/caregiver experiences
  • Educate patient communities about opportunities to provide input (e.g., advisory committees, patient-focused drug development meetings)

In this informative session, we will explore biomarker testing policy and how various stakeholders across industry, patient advocacy groups and the government collaborate to advocate for patient access.

  • Discuss the challenges and opportunities involved in shaping policies that ensure equitable access to biomarker testing for patients
  • Delve into the strategies employed by Genentech State and Local Government Affairs, ACS CAN, and the Massachusetts state government
  • Foster collaboration and advocate for policies that prioritize patient needs

Every year, payers make it harder for patients to access their doctor-prescribed treatments, burdening healthcare providers, negatively impacting clinical outcomes, and impairing patient quality of life. But recent years have seen patients’ influence on access decision-making grow. Have we reached a tipping point? And how can drug developers support patients’ efforts to win equitable access to beneficial therapies? This session examines recent trends related to access to medicines, and the influence patients can have on these decisions.

  • Utilization management: the tactics and technologies insurers and PBMs in the US and HTA agencies in Europe are using in 2024 to limit access and their effects on patients
  • Patient voices rising: lessons learned from 3-5 recent case studies where patients and advocates favorably impacted drug access
  • How pharma can engage with patients, advocates, policymakers, and other stakeholders in communicating the totality of a particular medicine’s value

This session starts with an interactive exercise to help you understand your own bias through eliciting ideas about power and privilege. Through a case study approach, you will be guided toward elevating equity as a strategic imperative throughout the product lifecycle.

  • Uncover equitable solutions for including patient voices
  • Understand the impact of social determinants of health and disability inclusion on clinical trial design
  • Define sustainability measures to achieve critical success factors

One strategic function of patient advocacy departments is to define and operationalize patient inclusivity across an organization. This includes building consensus, developing infrastructure, and educating or implementing cross-functionally. Given evolving priorities, resources, and external pressures, advocacy professionals may find themselves in the “sticky middle” – that place where patient inclusivity initiatives are deprioritized and timelines lag

  • Assess organizational readiness and manage expectations
  • Secure cross-functional buy-in from key stakeholders
  • Navigate changing priorities and resistance; overcome obstacles
  • Equip and empower all functions to adopt a patient-inclusive culture
  • Maintain momentum and measure impact

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.

Advocacy executives are teaming with partners including researchers, clinicians, HEOR and patients/caregivers. Learn more about successful case studies for partnering to publish posters, papers, abstracts, reports and more.

  • Publish about patient-focused initiatives at scientific congresses and in scientific journals
  • Incorporate patient authors into clinical publications
  • Share focus group data back to participants, researchers and clinicians
  • Increase patient and caregiver access to clinical study data through Publication Plain Language Summaries

Elizabeth (Beth) Pegg Frates, MD is a pioneer in Lifestyle Medicine education, an award-winning teacher at Harvard, and currently works with patients to help them adopt and sustain healthy habits. Dr. Frates is the Director of Lifestyle Medicine & Wellness at the MGH Department of Surgery, President of the American College of Lifestyle Medicine and an accomplished author. Since 1996, Dr. Frates has been on faculty at Harvard Medical School and has won multiple teaching awards for her work. Dr. Frates developed the concept of a Lifestyle Medicine Interest Group (LMIG) for medical schools that do not currently offer a course on Lifestyle Medicine and has been successfully running an LMIG at Harvard Medical School (HMS) since that time.

It’s imperative for you to know what differentiates your advocacy work. Understand more about ways to establish an effective metrics framework that enables you to communicate the value of your advocacy program organization-wide.

  • Be proactive and own the narrative on what you measure and why
  • Know what “good” looks like and the steps you need to take to get there
  • Tips for building a deck to communicate priorities and accomplishments in language that will be well received

Leaders in global patient advocacy and engagement thrive in ever-changing, dynamic environments with both external and internal collaborators. Gain insight from case examples and success stories on global advocacy.

  • How to build your team of internal champions around the world
  • Collaborate with local and regional stakeholders
  • Engage on various advocacy boards globally
  • Examine regulatory perspective and including patients in all process steps (HTA, FDA ODAC)

This session delves into the heart of patient-centric clinical research, exploring innovative frameworks that integrate patient insights into the fabric of clinical trials. We’ll uncover the unique challenges and opportunities in cell and gene therapy trials from a patient perspective, and share strategies to design trials that not only listen to but also act on patient input.

  • Identify frameworks for including patient insight into clinical trials
  • Examine patient needs in cell and gene therapy trials
  • Design trial protocols that reflect patient input

Luncheon Table Topics

Optimize peer-to-peer learning by crowdsourcing solutions to common challenges. The connections you make will become a valuable takeaway.

  • 1. Patient advocacy in small companies
  • 2. Plain language summaries
  • 3. Patient advocacy/commercial team collaboration
  • 4. Patient advisory boards and leadership councils
  • 5. Patient advocacy/compliance team collaboration

Dr. Russo is an accomplished biotechnology CEO with over 20 years of experience leading R&D and commercialization in the biopharmaceutical industry across a range of therapeutic areas, including oncology. As an executive leader, Dr. Russo has led successful teams from early preclinical research through all phases of clinical development, registration, and commercialization to bring innovative therapies to patients across the United States and Europe. She is currently the CEO of Xilio Therapeutics (NASDAQ: XLO), a clinical-stage company focused on developing tumor- selective, potent immuno-oncology therapeutics. Before Xilio, Dr. Russo was the President and CEO of Arsanis (NASDAQ: ASNS), a company developing monoclonal antibodies to prevent and treat serious infectious diseases. Prior to Arsanis, Dr. Russo spent 12 years at Cubist Pharmaceuticals (NASDAQ: CBST), a leading global anti- infective company that Merck acquired for $9.6B.

Through an evidence-based advocacy approach, a company’s patient advocacy function can help generate the data needed to support clinical development planning, regulatory submissions, commercialization, and market access efforts. Through the Red Cell Revolution, an example of cross-functional collaboration, our patient advocacy and HEOR leaders are teaming up to drive greater value for patients.

  • Breaking down silos, both internal and external
  • Working with patients, caregivers, and physicians to co-create solutions
  • Creative approaches to data generation and communication
  • Using data to support dialogue and relationship building

This workshop helps you transition from managing critical initiatives to innovative development and planning of advocacy strategy. Its main focus is on building strategic engagement plans that align with the mission of the business and on valuable communication techniques and ideas for building cross-functional workstreams and partnerships. Learn from innovative methods for co-creating with patient communities. Excellent opportunity to better understand potential expectations for short and long term career advancement.

This workshop helps you to chart next steps on the path to Chief Patient Officer and beyond. Key takeaways include critical experiences and approaches for working with the board of directors and C-Suite, broadening financial acumen beyond advocacy and achieving consensus. Discuss the obstacles and opportunities involved in cultivating teams, engaging with patient advocacy organizations on thought leadership and stewarding your brand. Brainstorm disruptive and effective solutions for differentiating your program and power. Participants must be a Chief Patient Officer, Vice President or Executive Head with 8+ years of experience.

Conference Conclude