Working Groups

We welcome you to choose how you participate.

In 2021, we have established four unique working groups to address needs and opportunities to make meaningful impacts in the areas of: Health Equity: Racial & Ethnic Health and Healthcare Disparities; Health Equity: Access to Care; Patient Voice/Patient-Focused Drug Development (PFDD); and The Future of Advocacy. We welcome you to choose how you participate in one or more of these working groups to use your voice to lead, or learn from others about the progress they are bringing to life.

 

Working Group Descriptions

Health Equity:
Racial & Ethnic Health and Healthcare Disparities

Where we live should not determine if we live. The structural, institutional and systemic disparities need to be corrected for everyone to have equitable healthcare.

This working group will utilize courageous conversations to better understand the current environment and be part of taking tangible steps towards correcting inequities.

Team: Sheila Thorne, Jessica Valence, Kemi Osundina, Tammi Fanson

Session Notes
February 11th, 2021
March 11th, 2021

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Health Equity:
Access to Care

Advancements in medicine and technology are creating better outcomes than ever, which makes the disparities in accessing care even more devastating.

This working group will take an unflinching look at current access to care to define and then contribute to the change needed.

Team: Brad Love, Eileen Shannon, Alison Handler, Nilam Perpich

Session Notes
February 11th, 2021
March 11th, 2021

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Patient Voice/Patient-Focused Drug Development

Patient involvement is increasingly being recognized as important to successful research and development of medicines and care. Patient-focused drug development...

(PFDD) is an emerging set of practices for engagement with patients and generating data on patients’ and caregivers’ experience. This working group will consider current guidances and practices to identify needed tools and resources to further promote and embed good practices.

Team: Neil Bertelsen, Christian Bullock, Miryah Morris, Birgit Roy

Session Notes
February 11th, 2021
March 11th, 2021

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The Future
of Advocacy

The role of patient advocacy organizations is changing. There are increased demands, new challenges, and also emerging opportunities for creating meaningful...

change within the healthcare system. This working group will define where advocacy has been, where it is today, and create tangible steps toward defining the future of advocacy.

Team: Gary Nolan, Lauren Lastauskas, Chad Saward

Session Notes
February 11th, 2021
March 11th, 2021

Session Slides
March 11th, 2021

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Upcoming Session

Where Representation Creates Action

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 we move into April and recognize National Minority Health Month, our session will be all about representation; learning from and honoring meaningful change driven by members of our communities. Our Working Groups will then share the progress they are making in their focus areas, as well as where we see overlapping priorities.