Authors: Kelly Gebo (The All of Us Research Program, USA)
In this interview we speak to Kelly Gebo, Chief Medical and Scientific Officer for the All of Us Research Program, about the project, which aims to enroll and learn from a community of 1 million participants, creating a broad data resource and ultimately moving towards individualized prevention, treatment and care for all.
First, could you introduce yourself and tell us a bit about your background?
My name is Kelly Gebo. I am the Chief Medical and Scientific Officer for the All of Us Research Program at the National Institutes of Health (MD, USA). I am also a Professor of Medicine at John Hopkins University (MD, USA) where I was involved in HIV health services and clinical outcomes research before moving to the All of Us position about a year ago.
Could you introduce the All of Us Research Program and tell us a bit about the rationale behind it?
The All of Us Research Program is part of the Precision Medicine Initiative. The mission of the project is to accelerate health research and medical breakthroughs to enable individualized prevention, treatment and care for all.
We have a couple of different objectives; one is to recruit a diverse population – we are trying to get a million people or more of diverse backgrounds to participate in this program. Second, we are trying to provide a revolutionary way to carry out research – we will have a national data source that everybody can use. And lastly, we’re working to engage our participants as partners. The participants are actually part of our governing body, helping us with making decisions in terms of what kinds of data elements they would like to know, what we should collect, how we should collect it and helping us think through how we should administer the project.
You’ve mentioned it already, but could you tell us a bit more about this participant-centric design of the project and why that’s important?
We work with our participant representatives both locally and nationally; participants are involved in local community engagement as well as national governing boards in terms of thinking through how we conduct our research project.
We include our participants as a very much part of our projects; they are not only data sources but people who are very interested in the results of the project and how it is going to improve health outcomes. So, we try to think about what are questions that are important to the participants and things that they would like to have us address. Sometimes these things are quite different to questions researchers might be interested in, and we try to moderate both because both are important.
How do you think the outcomes of this research could impact the frontline of care?
Unlike other research projects, we do not have a specific research question or hypothesis. This is really a data platform we’re building. What we are trying to do is collect data that will enable future research, making sure that it is thorough and deep as well as valid. But with regards to potential impacts, we have five points to our scientific framework; we are trying to enable research that will improve wellness resilience, reduce health disparities, improve risk assessments, provide earlier and more accurate diagnosis, and hopefully lead to improve precision treatment outcomes.
So, it is up to other researchers to delve into the data?
Exactly. We are building the platform and then we are hoping that researchers will be able to utilize it. We hope that not just people researching a specific disease can use it but also those investigating wide varieties of diseases or methodologies, hopefully encompassing all of the different parts of our framework.
Do you think infectious disease is a field that could particularly benefit from a precision medicine approach?
Absolutely. For example, it has been established in the literature there are some genetic biomarkers that correlate with individuals who have a hypersensitivity reaction to certain antiretrovirals for HIV. In addition, scientists have identified markers for tuberculosis medications where people under-metabolize or over-metabolize them and can either end up with a very low dose or very high dose.
So, I suspect we will find out more things in terms of infectious diseases, both for management in terms of which drugs might be best for certain populations of people, but I also anticipate that hopefully we are going to develop some improved strategies for treatment and prevention. For example, how do we improve diagnosis of bacterial versus viral versus fungal diseases in a more expeditious way?
What challenges are currently facing the field of precision medicine more broadly, and how do you think these could be overcome?
So that is a very interesting question. I think recruiting a diverse set of participants is important, and getting those populations interested and engaged in this study has been challenging. There have been populations who have been disenfranchised from research and there have been populations, who quite honestly, the research community hasn’t done the best job communicating with. In this project we have tried very hard to combat this, and I think we are making some good strides, but it is a long road.
I also think we need to better integrate technology into health research, and so we’re thinking about how we can utilize data from Fitbit or other wearable health technologies.
Then I think the other facet is educating the public but also healthcare providers on precision medicine and why it is important to study – a lot of the genetics that we are looking at were not taught when I was in medical school! So, getting our providers up-to-speed and helping them to know how to utilize these new tools to the best of their ability is another thing we’re working toward.
Could you just touch on how you are engaging participants?
We have community partners who are helping us in different communities around the country – for example, we have a group called FiftyForward that is working in Nashville (TN, USA) to recruit patients over the age of 50; we have the Asian Health Coalition, which is trying to help us with different subgroups or nationalities. Through these and dozens of our other partnerships, we have engaged with groups who have historically been understudied, to try to help them understand why research is important and to help them leverage their membership to join the program.
Finally, any other comments you would like to add?
From my perspective the diversity of our participant pool is really what drew me to this program. Having been involved in HIV and studied historically disenfranchised populations, that the All of Us Research Program is engaging a diverse set of participants and then engaging researchers was exciting.
A lot of people have viewed this as a genetic study but from my perspective, it is not; it is a population study and we have both survey data and physical measurements, too. So, there are a number of other characteristics of this research program that I want to make sure people are aware of. It is very interesting because it is not just us who are going to be using this platform, it is the world at large, and I am very excited to see what happens.
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