The National Institutes of Health All of Us Research Program, first announced by President Obama, will launch later this year in a political climate that is drawing attention to medical biases.
The program is designed to collect information on lifestyle, environment, and biology from at least 1 million people to boost research and improve health.
But this won’t work without widespread public engagement, said Dr Menon, PhD, from the University of Arizona College of Nursing in Tucson, who is participant-engagement director for the program.
The gathering of information from diverse groups of people for research purposes has not advanced much in recent years, Dr Menon acknowledged at the Big Data in Biomedicine 2017 Conference in Stanford, California.
A very embarrassing bias in genomics.
In 2009, only 4% of 1.7 million participants in genome-wide association studies, which scan thousands of people’s genomes to find links with disease traits, were from people not of European descent (Nature. 2016;538:161-164). That rose to nearly 20% of 35 million samples in 2016, which is still “a very embarrassing bias in genomics,” she pointed out.
Engagement of underserved populations will be key to the success of the NIH program.
“It has to be planned, it has to be targeted, and it has to be very deliberate,” Dr Menon said.
When people from racial and ethnic minorities are approached in the right way, and if the conversation is culturally appropriate, recruitment can be successful, she explained. That might mean referring to diseases and body parts in a way a grandmother in the culture might, she added.
Without the partnership of these communities, “we’re in danger of making the same errors we’ve made before,” she told Medscape Medical News. “We’d be applying the results and findings we got from a majority population to minorities.”
Without diversity, scientists do not get a clear picture of genetic factors in minority populations, or the social and environmental issues that affect them.
Building Trust
Training professionals from all levels, from trainees to scientists to leadership, could help. But during her presentation, Dr Menon also challenged scientists to involve members of underserved populations from the beginning, by encouraging them to join a community advisory board and asking them to help design research questions.
“These underserved populations are watching us very keenly to make sure that we are reaching out to them appropriately, that we are disseminating information, that we are taking executive summaries back, that we’re holding town halls, and saying, ‘Thank you for participating, here’s what we found and here’s how it’s relevant to you’.”
The current climate poses a challenge to the trust that is required for such relationships, especially among people from border states, she said.
“We must live up to the promises we’re making,” Dr Menon said. “The All of Us program says clearly in the protocol that we will not share data with any other government agency. The day we break that promise is the day we lose the trust of those underserved populations.”
The importance of two-way engagement was reiterated by Joshua Denny, MD, from the Center for Precision Medicine at Vanderbilt University Medical Center in Nashville, Tennessee.
“We really want to give people data back and make them partners in the process,” Dr Denny explained.
All of Us is in the final stages, and changes required by the Institutional Review Board are currently being implemented. The initial participation drive will be scaled up over the summer.
Currently, developers are testing the literacy levels of health surveys in a variety of populations across the country. The next steps will be to gather genomics information, mobile and wearable sensor data, and eventually imaging data, he reported.
Also in development is Sync for Science, a protocol that allows individuals to connect with researchers through a patient portal and to authorize the release of their electronic health data as records are updated. The protocol is being piloted this year with a number of health-record vendors, Dr Denny said.
“The idea is to bring raw data in and, over time, make it smarter through a variety of curation techniques. The curated data repository is what will be accessible to researchers,” he explained.
A member of the audience asked Dr Menon how data from children participating in All of Us will be protected over the decades.
Protecting Privacy
In Arizona, Dr Menon explained, they are working to get teen representatives onto the patient-engagement board to better understand what kids themselves might feel about this.
Getting children to participate and getting their parents to allow them to participate will depend on the value proposition, she pointed out.
“The story we tell and the language we use — I don’t mean whether it’s in English or Spanish or Polish, but the vernacular we use — will be very important. There’s a lot of work ahead of us,” Dr Menon said.
Dr Menon and Dr Denny have disclosed no relevant financial relationships.
Big Data in Biomedicine 2017 Conference. Presented May 24, 2017.
Follow Medscape on Twitter @Medscape and Marcia Frellick @mfrellick
Tidak ada komentar:
Posting Komentar