All of Us Participant Partners gather for first in-person retreat

Matt Schorr
November 20, 2018

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On October 9-10, 2018, Participant Partners for the All of Us Research Program met in-person for the first time to discuss important issues facing precision medicine.

 

NASHVILLE, Tenn. Gus Prieto was diagnosed with ALS (amyotrophic lateral sclerosis) in November 2013. The disease would impact his nerve cells and spinal cord, and if left untreated, it could render him unable to move, speak, eat or even breathe.

“Once diagnosed with an incurable disease, your thought process changes, believe me,” Prieto recalled. “Your eyes fully open.”

His first instinct was to determine what to do next. What path would he follow? What action would he take? It took some time, but he ultimately decided to do whatever he could to help others fighting similar diseases.

That determination, that drive to offer insight to combat degenerative illnesses like his, is what led Prieto to join the All of Us Research Project (AoURP) as a Participant Partner. The Meharry-Vanderbilt Alliance (MVA) has directed the Engagement Core since April 2018.

 

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Participant Partner Shawn Smith speaks on topics facing precision medicine today.

Historic effort

On October 9-10, 2018, the AOURP held the first in-person retreat for the newly selected Participant Partners to discuss important topics and issues facing the science of precision medicine. The AoURP is an historic, collaborative effort aimed at changing the way research is conducted in precision medicine by gathering a variety of health-related data from one million or more people living in the United States. Project researchers will take into account individual differences in lifestyle, environment and biology to uncover paths and implement best practices towards delivering precision medicine.

 

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Angelica Alton, from the All of Us Engagement Team, speaks about the program's mission and future directions.

Personal insight

Prieto was one of more than two-dozen Participant Partners that attended. Like him, they hoped to offer their own experiences – as well as medical and genetic data – to benefit precision medicine and improve healthcare for patients like themselves.

Michelle McNeely, a Texas resident who works for Cumulus Radio Group, was diagnosed with breast cancer in 2016. In 2017, she underwent both chemotherapy and radiation treatments, which led her to sign up for the All of Us program in October that year.

“It was an opportunity to share my opinion, and also to learn about the enrollment experiences of others and what healthcare issues are important to them,” McNeely said of the two-day conference. “It’s inspiring, because each of us has a story, whether it’s our own or a family member’s.”

 Karen Wall, a Registered Nurse and Veteran living in Northern California, lives with chronic illnesses related to her military service, including her time spent deployed during Operations Desert Shield/Desert Storm. Karen shared this about her experience, “As someone who receives care from the largest health care system in the country, I welcomed the opportunity to meet with and collaborate on ideas for moving forward with this project from the perspective of the consumer. It was refreshing and validating to be able to have my opinions and recommendations heard and accepted by the actual clinicians and policy-makers who are running this project. To know that my words will be integrated into the overall outcomes for research and care of others gives me a feeling of hope that precision medicine will be the way we improve healthcare globally.”

 

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Participant Partner Miguel Flores speaks during the two-day retreat.

Bringing diversity to medical studies

Historically, research has been designed by and focused on white males. A primary goal of the AOURP’s efforts, of which this meeting was part, is to bring diversity to medical research. Precision medicine is a revolutionary, all-inclusive approach to research that is not currently used in the study of the majority of diseases, as it places at the top of its list of priorities taking individual differences into account when doing medical research.

 “I have always been an advocate for including participants in every aspect of research,” Wall commented. “I was more than excited to be a part of something so important.” Wall works in the U.S. Department of Veterans Affairs as a Mental Health Nurse and a Memory Care Coordinator for the Community Living Centers at the Palo Alto VA.

 

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Participant Ambassadors Beth Rubinstein, Karen Wall and Keisha Bellamy; Steering Committee Member Michael Castro; and NIH AoU Engagement Team Member Yong Crosby look on during presentations.

Representing ‘all of us’

Held in Bethesda, MD, the meeting brought together members of the Steering Committee, Executive Committee, Advisory Panel and other AoURP governing bodies. It had three primary objectives:

Provide a supportive environment and exchange of ideas
Share key information and changes in the program to allow participant representatives to meaningfully contribute their perspectives
Increase perceptions of the value of participant input to the program and the value of the program to participants

“They truly represent all of us, with individuals from many different backgrounds, socioeconomic levels and parts of the country,” MVA Executive Director and AoURP Engagement Core Director Consuelo H. Wilkins, MD, MSCI commented.

 

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The AoURP Steering Committee holds a joint session where Participant Partners contribute their viewpoints and perspectives.

Joint session

During the two-day gathering, the Steering Committee held a joint session where the Participant Partners contributed their views on which types of genomic information should be shared and offered input on how that should be done.

“We covered so much in those two days,” Prieto said. “We should create a social media network, with questions and answers, where anyone could leave their questions.”

Wall added, “What is inspiring to me is to see the principle players in something ask regular folks like me what I think about something, and they take it to heart and thank me.”

 

About the All of Us Research Program

The All of Us Research Program is a key element of the Precision Medicine Initiative (PMI). Through advances in research, technology and policies that empower patients, the PMI will enable a new era of medicine in which researchers, health care providers and patients work together to develop individualized care. All of Us is a participant-engaged, data-driven enterprise supporting research at the intersection of human biology, behavior, genetics, environment, data science, computation and much more to produce new knowledge with the goal of developing more effective ways to treat disease and make a healing difference for the millions of people who suffer from them.