Your Role in the Precision Medicine Initiative Cohort Program

Posted by Carolyn Martin on October 26th, 2016 Posted in: Health Literacy, Public Health, Public Libraries

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Last month, on the PNR Rendezvous, the guest speaker was Malia Fullerton, Associate Professor of Bioethics and Humanities at the University of Washington School of Medicine and Adjunct Associate Professor in the UW Departments of Epidemiology and Genome Sciences, who informed the audience in regards to the Precision Medicine Initiative Cohort Program. This program has since been renamed the All of Us Research Program. The name reflects how All of Us will come together to change the future of health care. Many in the general public may not know much or anything about the Precision Medicine Initiative and may be even less aware of the All of Us program despite the fact that the National Institutes of Health is seeking one million volunteer to participate starting early 2017.

Participating in health studies has not always been a smooth road for participants who may not always understand the release forms they are signing despite steps taken to ensure what their participation means. Sometimes these studies have led to providing information for other uses than was originally understood leading to legal steps, anger, and distrust. This has happened in some populations and communities where government relations are already fragile due to historical events.

Fullerton’s presentation provided information on some of these historical cases as a way to provide context regarding the All of Us Program. The Precision Medicine Initiative is seeking to provide unique healthcare by working towards “providing the right treatment at the right time to the right person”. Volunteers are encourage to participate in the All of Us Program as a way of participating in improving the nation’s health. By voluntarily providing information through various means such as blood samples, it is hoped to that a wider range of data from more diverse groups of participants than in the past will provide better information to improve healthcare. The All of Us Program assures top security and privacy regarding the collected data of participants.

If you or those in the communities whom you serve are asked about participating or who may be considering whether or not to participate, providing some information regarding the specifics of what is involved including privacy and legal issues is important before signing up. Where to get that information? One place is the Precision Medicine Initiative All of Us Research Program website itself. There you will find information about the program, some frequently asked questions, and how to participate. Engage with your clinicians regarding participating. Ask questions and if you don’t feel satisfied with the answers ask who or where you can receive those answers or maybe participating isn’t right for you at this time. Don’t feel pressured. This is meant to be an opportunity to contribute to science and it isn’t for everyone.

The Precision Medicine Initiative has heard feedback from the public about the need for a platform where communities, organizations, and members of the public can provide comments and feedback about the Precision Medicine Initiative All of Us Research Program. They have just launched an online form to gather your input into the development of All of Us. Your input is valued and is felt will make the program stronger. So, please let the All of Us Research Program know your concerns and share your ideas for how to make this effort a success. You can submit those ideas here https://app.hatchbuck.com/OnlineForm/62861057585

The Precision Medicine Initiative offers an exciting and promising look at future health care and the opportunity to participate offers many possible benefits. Providing the needed information for healthcare professionals and the general public to engage in this initiative is important and libraries of all kinds can play a role.