By Ariel Worthy
The Birmingham Times
The goal of the All of Us Research Program is to help researchers understand more about why people get sick or stay healthy. People who join will give information about their health, habits, and what it’s like where they live. By looking for patterns, researchers may learn more about what affects people’s health.
Angela Williams is a research study navigator with All of Us and program coordinator at University of Alabama at Birmingham. Here, Williams discusses the program.
What is your role with All Of Us? My role as a navigator is to help guide the participants through the process [and] that might involve helping guide them through the consenting process which is online. Or that might involve helping them overcome any barriers to participating in the study. If they have any questions or concerns I might be able to help answer or link them to a resource that may be able to answer their questions and concerns. [I] also make suggestions to the planners on ways we may be able to reach all of us through various venues and gatherings or events where there may be people interested in the All Of Us program who may not be aware of it. So [my role is to spread] awareness in the community and help to educate groups who may want to know more about the program.
What kind of barriers might participants have to go through? A barrier may be – especially for those older participants –information or concerns they have about past research studies. It could be a transportation barrier because we’re asking the participants to come to us, where we’re located. Sometimes we have to come up with strategies or if there is a way we can reach other people by “pop up clinics” which requires a lot of logistics to do somewhere other than a clinical environment. Accessibility and transportation, when you want all of us to participate, that can be a challenge. There’re barriers of trust. For some people, if they are a minority, they may feel more comfortable with the presence of minorities on the study.
What are some of the questions participants have? The questions are as diverse as the people. Computer literacy is a huge issue for some populations and since this is a program where they have to consent and answer questions and surveys online, that’s a concern for some people. But, they can come into the clinic here at UAB and we can guide them through that process. Some other questions: what are you going to do with all of this information you have on me? That, again, comes from the trust factor. People want to participate but in this environment where pre-existing conditions can be an issue, people wonder can insurance providers get access to the information, will people make life insurance and disability insurance decisions; who will get access to the information you’re getting from us?
Can insurance companies get access to the information? There’s a federal law called the Genetic Information Nondiscrimination Act (GINA) which protects you from any healthcare provider using any information obtained from you to discriminate against you. Then UAB has a certificate of confidentiality from the National Institute of Health (NIH), which means we will not disclose their information even under court order; we’re not required to.
How are participants responding so far? The people that are participating are responding well to the program because they are excited from the beginning. One of the challenges is the strength from the different generations. Our communities are very diverse. Our populations who are computer literate, they’re very excited about the fact that you can do all the consenting online which saves a lot of time. They’re excited about having that option. But for another population, that’s an issue. There are some people who love the fact that it includes all of us, that we all get an opportunity to contribute to science. They get the chance to say, ‘if I can help someone in the future, even if it’s not me.’ They’re excited about the opportunity to leave the other generation better drugs, better access to medicine. Some like the fact that it’s free.
How are you going to keep people engaged? They can withdraw at anytime but the goal is to keep them engaged through surveys and email updates. If you’re going to participate you have to have an email, so when they get that email from All Of Us over that time period, they may also be able to sign up for other opportunities. They have a method for keeping everyone engaged.
How do you bring more minorities into the program? We have a community engagement part of All of Us. They have town hall meetings and participants are usually influencers. They have providers like myself; members of the Black Nurses Association; fraternity brothers; sorority sisters; people in the church who have health ministries. So you take the mix of people who already have the trust in the community who have been engaged for a long time. You get their input. Once you educate the influencers, they engage someone else.
Why is All Of Us important? When scientists and researchers come up with these new discoveries, if we’re not participating, if we lack representation, then it is going to possibly be more effective in the group that’s participating. We will not gain the efficiencies in the health value like other groups would. In order to gain the value from the research we have to participate.
MORE ABOUT ALL OF US
The All of Us Research Program is a large research program. The goal is to help researchers understand more about why people get sick or stay healthy. People who join will give information about their health, habits, and what it’s like where they live. By looking for patterns, researchers may learn more about what affects people’s health.
The mission of All of Us is to speed up health research. One million people are being asked to share their unique health data. This information will be added to a database. Researchers can then access this data to conduct thousands of studies on health and disease.
The goal for the entire Southern Network of All of Us is 20,000 participants per year for five years, total of 100,000. The Southern Network is Alabama, Mississippi and Louisiana.
For more information call (855) 282-2863, email firstname.lastname@example.org, or visit JoinAllofUs.org