Session Listing

The COVID-19 pandemic has intensified the need for accurate, trusted, public information about science and health. Swirling amid the global public health crisis is an "infodemic" - too much rapidly spreading information, especially disinformation and misinformation—fueling mistrust and, in some cases, endangering health and well-being in the US and around the world. This session will explore the challenges of communicating science and health findings, lessons learned from the pandemic, and strategies for making reliable science and health information trusted, accessible, understandable, and purposeful.

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This session will begin with Jen Horonjeff, Founder and CEO, Savvy Cooperative sharing her journey as a patient and as a professional who brings patient insights to the table to improve health innovations.

In the last decade, patient engagement in medical research emerged as a priority in the biomedical research ecosystem. Much progress has been made, with better integration of patients, data, and perspectives into biomedical R&D, and the expansion of the production and utilization of patient health data. COVID-19, along with social justice and equity movements, is transforming how biomedical R&D is conducted. But how are these trends shaping patient engagement? How are research partners ensuring representative study populations as the research landscape is shifting? Innovations are acknowledged, but what persistent challenges must be addressed? This discussion will highlight how patient engagement has evolved as panelists review initiatives currently shaping the field and emerging innovations influence patient engagement. Comparing advances in expanding diversity, equity, and inclusion for minority representation in R&D, they will predict likely patient engagement trends.

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Cell and gene therapies have the potential to transform the lives of patients and their families. As judged by patients' perspectives and experiences, how close are we to realizing this potential? By what approaches can government and drug developers work with patient communities to solve the challenges that remain? In this session, experts will discuss the most pressing pain points and opportunities for the future of cell and gene therapy research, development, and access.

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COVID-19 catalyzed a shift in thinking about patients—not just as individuals with diverse needs but as families, members of social networks, and communities. Understanding the need for a collective, collaborative approach, stakeholders across the health ecosystem have partnered in innovative ways to meet the unique needs of individuals, communities, and patient populations. Approaches have been designed to boost confidence in public health systems and address public health misinformation. Speakers in this session will spotlight innovative public-private partnerships and models that have emerged in response to the pandemic: lessons we can learn and apply in the future.

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Life expectancy in the US declined by 1.5 years from 2019 to 2020 in the largest 1-year drop since World War II. While COVID-19 caused 74 percent of the decline, chronic conditions such as diabetes, heart disease, and kidney disease take a heavy toll. Although largely preventable, as leading causes of death and disability chronic diseases are the main drivers of US health expenditures. Strategies to reduce or eliminate chronic diseases are imperative. "Whole-person-centered care" is an integrated approach to improve care coordination, well-being, and health outcomes. Experts will review person-centered care-delivery models and the opportunities and challenges they present in reshaping the management of chronic diseases.

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Cancer is among the leading global causes of death. As populations age, cancer-associated costs will increase along with the need to provide care and treatment for more patients. Immunotherapy and precision treatments for cancer command attention and investment as the science advances. But further innovations across the spectrum of research and care will be needed before we can claim victory over this hydra-headed group of diseases. How are clinicians using data and advanced analytics to improve cancer research and detection? How is technology being deployed to improve research and care? What types of collaborative approaches can help advance treatments, diagnoses, and cures? And where are more collaborative approaches needed?

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Genetic testing is critical to the diagnosis of many rare conditions. Genetic counselors play a vital role in helping patients and caregivers understand test results and providing them with the information needed to determine the appropriate next steps. Yet significant barriers remain in access to genetic tests and genetic counseling. This discussion will focus on policies to address these barriers, the key considerations in implementing them—including potential unintended consequences of interventions—and the areas where additional progress is most needed.

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Systemic health-care inequities exposed by the COVID-19 pandemic included minority under-representation in research and disparities in care. The surge in digital health technologies carries a potential for leveraging health data to influence biomedical research, engage patients in data collection, and promote equity. Digital health technologies can eliminate historic barriers to access and expand types of data obtained directly from patients. Use of such technologies could encourage patients to engage in research, promoting diversity in clinical trials to ensure that trial data will influence health outcomes. How can digital technologies be designed with twin goals of equity and partnership with patient communities? Experts will explore how digital health technologies might bridge the data divide by enabling equitable data collection and addressing under-representation in biomedical research. They will review means of expanding patient engagement in the use and application of health data.

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The CDC reported a record 93,000 overdose deaths in the US in 2020. Though addiction may yield to COVID-19 in the news, this grim number tells that the addiction crisis rages on, exacerbated by the effects of necessary social distancing measures. Understanding the journeys and needs of people with substance use disorders—from diagnosis through ongoing recovery—is critical, particularly for companies that include many such employees, whether or not they share their diagnoses. What investments can help employees access health benefits in a way that gives equal weight to mental and physical health? What measures can ensure that members of the workforce battling addiction receive long-term support, trust, and sensitivity—from organizational leadership on down—to keep working while accessing care with recovery the goal? Experts and employers will discuss how new solutions, mindsets, and approaches can transform the role of the workplace in addressing the addiction and mental-health crises.

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