The Exchange Sessions

Whether you’re interested in learning about managing health conditions for yourself, supporting your peers or changing health systems to improve outcomes for everyone, this session will arm you with knowledge to take action in the health areas that are important to you. Join us as two world-leading patient advocates share their personal experiences creating organizations and then global movements that are increasing awareness and action for diseases that are invisible until they become more serious.

Although the opportunity for all people to attain the highest quality of life is becoming part of global healthcare discussions, the voices of those with lived experiences are too often excluded. During the last two years, Advocacy Exchange members have shared their expertise and lived experiences in four working groups. These working groups are now harnessing all of the advocate perspectives to co-create and drive two projects in 2023. The first project will be the creation of a resource for individuals who are experiencing discrimination in the healthcare system. The second will be the creation of a tool for individuals and allies who want to utilize their voice to create health equity structural change. We hope you’ll join us and contribute to this powerful conversation with our Working Group leaders – Sheila Thorne, Brad Love, Neil Bertelsen, and Gary Nolan – as we talk about what we can accomplish together and how we will make our mark in healthcare through these advocate-driven efforts.

As Nelson Mandela once said, “To deny people their human rights is to challenge their very humanity.” Humanity is at the core of all that we do. That’s why The Advocacy Exchange is proud to honor Universal Human Rights Month in December, as well as United Nations Human Rights Day on December 10. As we bring 2022 to a close, we’ll reflect on our work over 32 sessions of The Advocacy Exchange that has spotlighted advances in human rights within the healthcare space, as well as discuss the importance of Patient Rights for individual care. Please join us for this meaningful discussion about the power and impact of protecting the rights of people all over the world.

For many people, living with disease is more than managing physical health. Everyday expenses and the ability to afford quality medical care, even with insurance, can be overwhelming. Socioeconomic challenges, depleted personal finances and understanding changing policies are just a couple of the challenges that people face in pursuit of care. The good news? Patient advocacy organizations often have resources that can help ease the financial burden. Join us for this session, where we’ll talk openly about balancing physical and financial health and how patient advocacy is leading the way to support people in these areas.

Managing a chronic illness is a lifelong journey that impacts people in different ways. In addition to maintenance medications, frequent health visits and daily efforts to be as healthy as possible, the mental component of a lifelong disease can carry enormous weight.  Prioritizing your mental and emotional well-being to the best of your ability is critical, whether you’re navigating stigmas associated with the visible or perceived impact of a chronic illness, combating worsening symptoms brought on by stress or just doing your best when you’re not feeling your best. We invite you to join us for an open and honest conversation about how to embrace positivity and support your mental health while facing a chronic illness.

Caregiving can take on many forms. Whether it’s physically caring for a loved one who is in treatment or managing a chronic disease, working with patients, or providing critical emotional support to those in need, caregivers often, and inadvertently, put their own needs aside. During this session, we’ll talk openly about different factors that can impact a caregiving experience, including cultural influences, caregiving from a distance, and managing care during times of personal stress. We’ll also discuss how caregivers can create balance between caring for another and managing their own mental health and well-being.

When flight attendants review safety procedures they tell you to take care of your own oxygen mask before assisting other people. This concept applies to advocacy as well. You must take care of yourself in order to be at your best to help other people. With this in mind, we invite you to join us for this session of The Advocacy Exchange that’s focused on YOU. During this session, attendees will learn how meditation can help reduce stress and participate in a guided meditation exercise. You will also have the opportunity to ask the instructor questions. We hope you’ll join us and allow yourself some time for reflection on your own well-being and mental health.

Any movement toward positive change requires people sharing their lived experiences—to give voice, raise awareness, change minds, educate or motivate. It requires advocates. But how can advocates feel confident that their stories are being heard and truly making a difference? Join Tim Cage and John Capecci, cofounders of Living Proof Advocacy, as they describe their model of support for advocates sharing their personal stories.

Insights from the patient community are valuable in designing and developing medicines and treatments that positively impact the patients who need them most. By including patients in each cycle of medicines development, from early research and clinical studies to approval and use of medicines, stakeholders in healthcare can ensure that the patient voice is heard and incorporated to improve health outcomes. Join us for this panel discussion, featuring advocates with global experience, who will examine early research, clinical development and Health Technology Assessment/Regulatory from the perspectives of the advocate and patient communities.

There can be no improvement in medicines without clinical trials. There is no movement forward in healthcare without research. People are at the heart of patient-centric advancements, however it’s not one-size-fits-all. In this panel discussion, we will explore the importance of research participation and representation in improving healthcare outcomes, as well as how researchers are actively making strides to improve the patient experience.

How providers interpret the needs of their patients can often dictate health outcomes. While standardized approaches to healthcare have established practices intended to equalize quality of care, when patients are treated by providers who don’t understand them, this type of care can fall short of meeting individual needs. Join us as we explore health equity through the lens of gender and discuss how traditional and evolving definitions of gender identity can create nuances in the physiological and social elements of personal care.

While managing care for yourself and your loved ones, asking questions and discussing alternative options can be intimidating, especially while navigating personalities, treatment decisions, and unknown medical terminology. It’s not always clear how best to communicate with providers and staff to get the best care for your individual needs. This session, sparked by conversation in the Advocacy Exchange in 2021, will examine how to effectively ask for what you need – both for yourself and your loved ones – while balancing personal wellness. Join us as Gary Nolan, leader of “The Future of Advocacy Working Group,” moderates this panel discussion featuring Kelly Cuvar, Nancy Ferro, Colin Ferro, and Megan-Claire Chase, as they share their personal and professional experiences and suggest best practices to make the most of your relationship with your healthcare providers.

The need for cultural competency and individualized care can make a drastic difference in a person’s chances of positive outcomes. In 2021, The Advocacy Exchange created a space for advocates to talk about the realities of racial and ethnic health and healthcare disparities through live sessions and Working Groups. Dr. Rachel Bond, MD, FACC, Co-Chair of the Women and Children's Committee for the Association of Black Cardiologists, Inc. and Sheila Thorne, President and CEO, Multicultural Healthcare Marketing Group LLC have dedicated their careers to illuminating health care disparities and making systemic changes that provide individuals the best opportunities for quality healthcare. Join us for this impactful conversation, moderated by Brad Love, Ph.D., leader of the Access to Care Working Group, as we have an honest conversation about what effective, competent and equitable health care looks like.

In the 1980s, HIV was an unfamiliar and stigmatized disease that created panic in people who didn’t understand it. This fear of the unknown created an uphill battle for advocates who were working to find the best and most human treatment for HIV patients. During this session, we will discuss lessons that advocates learned as they found dignity for patients amid controversy, and how having a voice at the table, rather than shouting from the sidelines, led to significant change. The attendees in The Advocacy Exchange share a relentless passion for creating change in their areas. Join us for this courageous and authentic conversation, which will include opportunities for you to ask questions and/or share your experience(s).

Nearing the end of life’s journey can be one of the most difficult experiences a person or family can go through. While most of the attention focuses on medical care, there often isn’t enough discussion about the emotional stress and many challenges that affect the patient and caregivers. Join us for this special session led by retired hospice counselor and end of life doula, Susan Desmarais, a professional caregiver and three-time cancer survivor, as she leads us through this meaningful conversation.

Technology and the sharing of personal stories combined can have a profoundly positive impact on patient care and well-being. In recognition of National Diabetes Month in the United States, Paul von Autenried, executive vice president and chief information officer at Bristol Myers Squibb, will share his personal story of living with diabetes as well as the impact technology has had in his own journey as a patient and in his work. Additionally, Melodie Narain-Blackwell, entrepreneur, health advocate, and founder of Color of Crohn’s and Chronic Illness (COCCI), will speak to the significance of living with Crohn’s disease, and how her experiences have brought to light opportunities for increasing health literacy, eliminating disparities and enhancing patients’ access to quality care.

The United States is the global leader in ensuring patients have timely and sustained access to the newest, innovative medicines. As policymakers in Washington D.C. consider various drug pricing reforms, one idea under discussion is the adoption of a national health technology assessment entity.

COVID-19 has interrupted our global healthcare systems, creating issues with patient access, new medicines development and global advocacy initiatives, as more than half of the world's population was under some form of lockdown in 2020. It also illuminated racial and ethnic healthcare disparities that have run rampant for far too long. In the face of these profound challenges, many advocates and healthcare providers have a new understanding of the issues facing their communities. This session will feature global experts as they discuss the insights they’ve gained throughout the pandemic, and how they’ve given a voice to those who are often voiceless.

Join us for an interactive conversation with Mark Bertolini, national healthcare thought leader and former chairman and chief executive officer of Aetna Inc. A pioneer in the industry, he led the company’s transition from a traditional health insurance company to a consumer-oriented healthcare company focused on delivering holistic, integrated care in local communities. After hearing from Mark, our Working Group leaders will join the dialogue to share key insights from their group discussions, including how each are reimagining healthcare.

Living a full life after a diagnosis, or managing a chronic disease, is a relatively new focus in global health and healthcare. To celebrate National Cancer Survivor Month in the United States (U.S.) in June, we will delve into the topic of living with a disease and explore what this means for individuals around the world.

More than a year into a global pandemic, the need for awareness, connection and resources to support wellbeing and mental health are more important than ever. In recognition of Mental Health Awareness Month in the U.S. in May, join us to hear Teri Brister, national director, research & quality assurance at NAMI (National Association on Mental Illness), discuss how to navigate the U.S. healthcare system to receive mental health support.

So far in 2021, the COVID Advocacy Exchange has brought the global advocacy community together to not only hear from each other, but to prioritize and begin to tackle global health issues. Discussions in the first quarter of the year have focused on "Patient Insights Influencing Action," "Harnessing Our United Strength to Create Meaningful Change," and "Outlining Our Paths to Impact and Change."

As our companies operate against the backdrop of an unfolding global pandemic and a massive societal change, a new reality is emerging. Disruption that seemed like a sprint is proving to be a marathon. The “new normal” is never returning.

As individuals experience these topics in different ways, our first Working Group session was focused on understanding meaning to establish a common baseline from which to grow. As we continue to build a strong foundation for success, our second Working Group session on March 11 will identify those...

With more than 25,000 people engaging in the COVID Advocacy Exchange in 2020, including 288 different advocacy organizations from 95 countries, it is evident there is a need for the platform, the connections and resources it provides. Not surprisingly, there is also a desire to expand on the established foundation and elevate our united strength to bring about real change. We asked - and you identified - four...

Let's take a step back. It's the New Year after a year unlike any we could have imagined! However, in the midst of the disruption and disaster wrought by COVID, the advocacy community has accomplished some great things. Join us on January 14th at the COVID Advocacy Exchange as we take stock of the year by discussing the accomplishments that did happen and consider what more we can do in 2021!

As healthcare systems have increased in size, it has become difficult for patients, doctors and caregivers to have meaningful conversations. And … it can sometimes feel like physicians, patients and advocates, and industry all speak different languages. Throw in the intense pressure of the COVID pandemic and the lack of good communication between these groups can leave people pulling...

The pandemic has brought the topic of health inequalities to the forefront of people’s minds across the globe. We live in an era where technology has made healthcare more available than ever before, and yet we struggle to deliver fair and equitable care to those who need it most. Now we have a chance to reassess and correct systemic imbalances in our health systems. What will we do with this...

COVID has caused unprecedented disruption to the global economy, leaving millions of people without jobs, or a plan for how and when to return to work. While some companies have developed detailed strategies to maintain safety, many others do not have the means or infrastructure to invoke health screenings or social distancing rules. Compounding this, there has been little discussion of...

If there is one positive thing that can be taken from the COVID pandemic, it is the opportunity to step back and reassess how our healthcare systems provide care. Whether uncovering areas for improvement, beginning to address health inequalities, or creating new opportunities for collaboration, COVID has demonstrated the strengths and weaknesses of our systems. As we return to treatment...

Patient-focused drug development is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into clinical testing. This week, you can learn from experts how this new paradigm in drug development is impacting the way researchers and pharma companies think about trials and how it is making healthcare more...

COVID-19 has exposed the inadequacy of healthcare systems around the world and brought public attention to government and private institutions alike. The lack of preparedness points to inefficiencies, lack of resources, and the impact of for-profit healthcare. COVID offers an opportunity to reshape healthcare in ways that were impossible just a few months ago. The pandemic may be the...

Preventative care is among the most important responsibilities of the healthcare system. Whether screening for cancer, monitoring cholesterol to decrease the risk of heart disease, or administering immunizations to prevent deadly infections, preventive medicine saves lives, lowers healthcare costs, and improves population health. With COVID disrupting our ability to distribute these vital services, there is a paramount need to develop new ways of making preventive care available to patients at home. This session brings together physicians, patients, and other experts to discuss the future of preventive care and public health after COVID-19.

The end of quarantine has little meaning for the millions of patients with chronic medical conditions around the world. While the healthy begin to get back to some semblance of a life, those with pre-existing conditions are left to wonder when, and if, that will be a possibility. With so many basic questions left unanswered, the need for simple, practical solutions to patient problems is greater...

As people around the world report significant and sustained increases in symptoms of depression and anxiety, it has become abundantly clear that COVID will impact our mental health just as hard as our hospitals and economies. Social-distancing and stay-at-home orders, job loss and insecurity, uncertainty and worry--all contribute to a growing crisis that is falling hard upon...

An important consequence of the global pandemic has been to greatly accelerate the use of telemedicine. While this development has enabled continued contact between patients and physicians during COVID, it has also exposed the pervasive inexperience of our medical systems with digital and virtual models of care. This session will bring together patients, physicians, and advocates to discuss...

Since the coronavirus pandemic started, clinical trial recruitment and enrollment is down 40-60% across therapeutic areas. As the quarantine period ends, we are left with many questions about how to safely move forward with research, especially for patients suffering from serious, life-threatening diseases that might increase their risk of dying from COVID-19. This session will bring together the...

A major change wrought by COVID is the transition to virtual communication. Advocacy organizations face the daunting task of restructuring their entire communication frameworks to meet this new reality. This session brings together experts from academia, advocacy, and industry to discuss how to build a virtual organization, run a virtual conference, and initiate virtual fundraising, so...

In a post-COVID world, advocacy organizations will face increased pressure to meet their mandates with fewer resources and fundraising capability. Coalitions offer a simple and effective way to pool resources, share information, improve problem-solving, and increase awareness. In this session, we will investigate the impact of coalitions on patient advocacy and explore best practices for forming...

This is an unprecedented time for healthcare systems around the world. We, as patient advocates, are rushing to understand the impact on our communities and to figure out the best way to offer aid, resources, and support. This first session will focus on framing the problems that we all face so we can begin to tackle them together. Our panel will open the conversation by addressing...