This content is in partnerships with the All of Us Research Program at Froedtert & the Medical College of Wisconsin. For more information, click here.
For decades, the concept of precision medicine – of individualized treatment, with a greater knowledge of how diseases and treatments impact individual people, especially those often overlooked by healthcare research – has been discussed as the future, as the health care of someday.
With the All of Us Research Program, that future is closer than ever.
“I was told, when I graduated medical school in 1984, that I would be using genetic testing and within ten years, it would change my practice. I haven’t used a genetic test up until about two years ago, because it just wasn’t a part of primary care practice,” said Dr. Jeffrey Whittle, physician at the VA Medical Center in Milwaukee, Professor of Medicine at the Medical College of Wisconsin, and the leader of the All of Us Research Program in Milwaukee. “Now, it’s going to happen very quickly. It’s going to happen before I retire – and I’m 64.”
Someday is looking more and more like tomorrow. It just needs your help.
Begun as a part of the Precision Medicine Initiative (PMI) in 2016, the All of Us Research Program aims to accelerate more medical breakthroughs and discover greater medical knowledge using genetics – in the process, developing more customized and inclusive health care that isn’t just one size fits all.
“When I do my primary care practice, I don’t check people’s genetics before I prescribe them a drug; I rely upon what works best for most people,” Dr. Whittle explained. “The same thing goes for testing. Although we tailor our testing a little bit, it doesn’t really take advantage of all that we know about what predicts outcomes. Certainly genetics is the easiest to understand for people, but also living in certain parts of the city means you’re exposed to different things and probably have different risks of certain diseases. And we haven’t leveraged that.”
Part of the problem is also that medical research hasn’t always considered all types of people from all walks of life. So, to help push forward more precise care, more precise medical knowledge and more innovations in health care, All of Us is building a diverse health database – including individuals’ genetic biosamples, health history, geography and health behaviors – for researchers to learn more about how specific treatments and preventative care methods impact different people.
“We can look and say, ‘Well, looking at this data, if we know this, it would change how we manage that,’” Dr. Whittle said. “And instead of the (National Institutes of Health) spending a million dollars on this study and five million dollars on that study, each time having to gather a group of people for it, we’re trying to assemble this cohort of folks who are interested in research, who really understand the importance of precision medicine and how much it’s going to change how we care for people – and say ‘I want to be a part of that.’”
That’s where you come in.
To help build this database and build more medical information more reflective of our diverse communities and people’s individual needs, All of Us aims to gather more than one million participants into its program. The process to join is free and simple, starting with creating an account at the All of Us Research Program’s website. There, participants will provide consent, share health records and answer health surveys. To complete the enrollment process, volunteers may then book a free in-person appointment to donate blood and urine samples to the database. And just like that, you’ve begun helping shape a better future for disease prevention and treatment.
Of course, the future isn’t made in a single day. After enrolling, participants may opt to connect their wearable health devices – like a Fitbit or Apple Watch – to their records in the All of Us database. Information like this will help researchers see how health changes over the years and how individualized medicine might change as well. One thing that won’t change over time: Participants’ information will be securely protected (for more information on the program’s specific privacy safeguards, click here) and the research done with the All of Us database will be transparent and available for volunteers to see at this website.
“There have been some scary things about health research, especially in the African-American community such as Henrietta Lacks and the Tuskegee Study,” said Taquanda Gilbert-Crampton, community engagement manager for the All of Us Research Program. “We want to just educate our community and let them know that we have moved forward. We have implemented plenty of protocols and guidelines that researchers must follow to make sure that we are giving safety to our participants.”
The research process will be a long journey – but one with rewards both big and small, immediate as well as eventual for participants. For one of the smaller rewards, those who complete the six-step enrollment process will be reimbursed for their time with a $25 gift card. Participants can also choose to learn more about their DNA in the process, gaining knowledge about their ancestry and other information stored in their genetics. (Perhaps even if they have the gene that makes cilantro taste like soap.)
"Once you start that process with that technician, that’s a lot of interesting education that plugs you in. You’re getting something and learning something about yourself,” said Otis Winstead, president and CEO of Great Lakes Dryhootch, as well as a multi-year participant in All of Us.
The true reward, however far off into the future, is worth much more than $25: a future of medical treatment and prevention that includes everyone, fueled by research breakthroughs made at breakneck speed thanks to science and the public working together.
"For decades and decades and decades, they only had one particular demographic that they were using, one population,” Winstead said. “So we talk about diabetes and high blood pressure and other types of physical illnesses, the lightbulb went off in my head that: Perhaps if I was using medications that were kind of tailored to my particular demographic, that might make a difference. And not just for me – because I’m kind of older – but for my grandchildren.”
Winstead was so encouraged by the research program that he’s worked with Froedtert & the Medical College of Wisconsin to bring All of Us enrollment and information pop-up events to his non-profit organization, which aids and provides peer support for veterans and their families.
“When you’re talking about veterans, you’re talking about situations with PTSD and talking about toxic situations that they were exposed to overseas – so that’s a particular population that needs to be looked at for precision medicine,” he added.
The research program has already made some useful discoveries in these early years. For instance, Dr. Whittle noted that, with the blood samples in the All of Us database, they were able to discover that COVID-19 was spreading in Wisconsin before the state’s first confirmed positive case and that “the stresses of COVID-19 leading to increased mental health symptoms disproportionately fell on populations that were from racial and ethnic minorities.”
And that’s just the start.
“What excites me is what’s going to make my practice better,” Dr. Whittle said. “I think, with the multigene diseases like diabetes, hypertension and cardiovascular disease, we’re going to be able to move away from just saying ‘you had a parent who had this at a certain age, so you’re at higher risk’ to being able to give you a little bit more accurate, genetically informed risk prediction. I think when I prescribe medicines for diabetes and hypertension and depression, I will do a better job if I know what your genetics are. I think we will be using them to prescribe medicines in five years – and All of Us will speed that process.”
But only with our help. Currently the program has almost 500,000 fully enrolled participants – halfway to their goal of one million and beyond. To join those participants and for more information about the All of Us Research Program – including how to enroll – visit their website. And for a list of upcoming pop-up enrollment events, click here.
As much as it is a gigantic cliché to say that one has always had a passion for film, Matt Mueller has always had a passion for film. Whether it was bringing in the latest movie reviews for his first grade show-and-tell or writing film reviews for the St. Norbert College Times as a high school student, Matt is way too obsessed with movies for his own good.
When he's not writing about the latest blockbuster or talking much too glowingly about "Piranha 3D," Matt can probably be found watching literally any sport (minus cricket) or working at - get this - a local movie theater. Or watching a movie. Yeah, he's probably watching a movie.