The Gift of Research: Community Voices & Health Stories

Understanding Long COVID

In this episode, we dive into Long COVID,a condition that continues to baffle experts and impact millions globally. We've brought together some special guests to help us understand more about it. Dr. Cheryl Clark will explain the science behind why Long COVID happens and why it's different for everyone. Netia McCray, who is dealing with Long COVID herself, will share what it’s like to live with these ongoing symptoms. Jacqui Lindsay will talk about how people are coming together in communities to help each other out. Joining us to unpack the complexities of Long COVID are three distinguished guests. Dr. Cheryl Clark, a leading epidemiologist, offers a deep dive into the latest research and medical understanding of Long COVID, explaining why it affects individuals so differently. Netia McCray, a Long COVID survivor, shares her personal journey through the maze of ongoing health issues, highlighting the emotional and physical toll it takes. Jacqui Lindsay, a community organizer, discusses the grassroots movements that have sprung up to support those affected, showcasing the power of community in facing health crises.   Organizations mentioned in episode:  Boston RECOVER [https://www.bostonrecover.org/]  Community Engagement — Boston RECOVER [https://www.bostonrecover.org/bcrc] Home | National Academies [https://www.nationalacademies.org/] Research Projects Directory – All of Us Research Hub (researchallofus.org) [https://www.researchallofus.org/research-projects-directory/?searchBy=workspaceNameLike&directorySearch=Long+COVID] Resources:  Long COVID or Post-COVID Conditions | CDC [https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html]

Unlocking Better Health for All of Us Through Partnership

Engaging diverse communities in health research begins with building meaningful partnerships. In the latest "Conversations with All of Us" episode, Dr. Karriem Watson, Chief Engagement Officer for the All of Us Research Program, and Destiny Harden, Clinical Research Coordinator and Pre-Doctoral Fellow at Massachusetts General Hospital, discuss the importance of meaningful community engagement, where communities are empowered to share their voice.

The Gift of Research: Community Voices & Health Stories

Cheryl McCloud speaks to members of the community, All of Us participants, and medical researchers, about how they feel about participating in health research. Their stories paint a picture that can help us understand how to keep our communities healthy.  How to get involved in health research:  * https://www.bmc.org/research-operations/participate-research [https://www.bmc.org/research-operations/participate-research] * https://www.massgeneralbrigham.org/en/research-and-innovation/participate-in-research [https://www.massgeneralbrigham.org/en/research-and-innovation/participate-in-research]  * https://www.bmc.org/research/participate-research-or-clinical-trials [https://www.bmc.org/research/participate-research-or-clinical-trials]  * https://www.massgeneral.org/research/clinical-trials [https://www.massgeneral.org/research/clinical-trials]  * clincialtrials.gov [clincialtrials.gov] * JoinAllofUs.org/PodcastNE  [JoinAllofUs.org/PodcastNE] Sources:  1. https://www.framinghamheartstudy.org/files/2023/09/75th-Anniversary-of-FHS-BU-Article.pdf [https://www.framinghamheartstudy.org/files/2023/09/75th-Anniversary-of-FHS-BU-Article.pdf]  2. What clinical trial statistics tell us about the state of research today (antidote.me) [https://www.antidote.me/blog/what-clinical-trial-statistics-tell-us-about-the-state-of-research-today#:~:text=Key%20clinical%20trial%20statistics&text=Some%20key%20facts%20include%3A,to%20enroll%20a%20single%20patient] 3. Newly Identified Genetic Variant Protects Against Alzheimer’s | Harvard Medical School [https://hms.harvard.edu/news/newly-identified-genetic-variant-protects-against-alzheimers] 4. The Gene That Explains Statins’ Most Puzzling Side Effect - The Atlantic [https://www.theatlantic.com/health/archive/2023/06/the-gene-that-explains-statins-most-puzzling-side-effect/674542/] 5. People fearful of taking part in vital clinical research | ScienceDaily [https://www.sciencedaily.com/releases/2020/03/200316104010.htm]

The Importance of Diversity in Health Research

In the latest “Conversations with All of Us” podcast episode, Cheryl McCloud speaks with Daniel Moretti, Community Engagement Lead with PRIDEnet, and Edie Stringfellow, Vice President of Ecosystem Development for the Center of Global Health Innovation and All of Us New England Community Advisory Panel member, about the importance of diversity in health research. About the guests: Daniel Moretti (all pronouns) is Community Engagement Lead with PRIDEnet, based out of Stanford University. His work focuses on connecting LGBTQIA+ community members with ways to participate in research, such as The PRIDE Study and the All of Us Research Program, and creating opportunities for community input to inform all stages of the research process. Daniel has more than fifteen years of experience working at the cross sections of community engagement, social justice, research, and non-profit arts in diverse locations including San Jose, San Francisco, Los Angeles, Boston, London (UK), and Cebu (Philippines). Edie Stringfellow (she/her) is the Vice President of Ecosystem Development for the Center for Global Health Innovation. Ms. Stringfellow recruits national and international pioneering organizations to expand Atlanta, GA’s collaborative biohealth ecosystem, a growing and thriving marketplace where the life sciences community works together to balance global and local priorities. She is also a Community Advisory Panel member for All of Us New England.  Research studies mentioned in the episode:   https://www.mcgill.ca/oss/article/history/40-years-human-experimentation-america-tuskegee-study [https://www.mcgill.ca/oss/article/history/40-years-human-experimentation-america-tuskegee-study] More than Tuskegee: Understanding Mistrust about Research Participation - PMC (nih.gov) [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4354806/] All of Us Research Hub (researchallofus.org) [https://researchallofus.org/]

Mental Health Matters to All of Us

Host Cheryl McCloud is joined by Dr. Jordan Smoller, psychiatrist at Massachusetts General Hospital and Professor of Psychiatry at Harvard Medical School, and Dr. Jessica Isom, community psychiatrist at Codman Square Health Center, for a discussion on mental health, the barriers to accessing mental health care, and the future of mental health research.  To learn about the benefits of participating and how you can join, visit mgb.JoinAllofUs.org [http://mgb.joinallofus.org/].  Resources mentioned in the episode:  NAMI.org [https://www.nami.org/Home]  American Psychological Association [https://www.apa.org/]  American Psychiatric Association [https://www.psychiatry.org/]  All of Us New England Mental Health Resource Guide [https://mgb.joinallofus.org/en/stay-involved]  National Institute of Mental Health [https://www.nimh.nih.gov/]  Anxiety and Depression Association of America [https://adaa.org/]  988lifeline.org [https://988lifeline.org/]  Crisis Text Line [https://www.crisistextline.org/]  Acrynoyms:  SAMHSA - Substance Abuse and Mental Health Services Administration  BIPOC – Black, Indigenous, and People of Color