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Precision Medicine News

NIH to Bring Precision Medicine Data Collection to Patient Homes

The NIH is partnering with a mobile specimen collection company to expand the reach of the Precision Medicine Initiative's All of Us patient cohort.

Precision medicine initiative data collection

Source: Thinkstock

By Jennifer Bresnick

- Thousands of volunteers for the All of Us precision medicine cohort won’t even have to leave the comfort of their living rooms when contributing data to the project thanks to a new NIH collaboration with mobile medical service EMSI.

The All of Us program, formally known as the Precision Medicine Initiative (PMI) Cohort, aims to collect biosamples from at least one million patients to fuel big data analytics and personalized medicine research.

While a National Institutes of Health survey from 2016 indicated that patients are generally very interested in contributing genetic, clinical, and environmental data to one of the nation’s most ambitious research projects, collecting data from patients at scale is a significant logistical and technical challenge.

The NIH is looking to help solve the puzzle by enlisting the help of EMSI, which provides in-home phlebotomy and specimen collection services. 

The strategy may bring two key benefits: increasing the convenience factor for contributors and reaching patient populations that may be homebound due to illness, those who lack access to transportation, or individuals who maintain only infrequent contact with the healthcare system.  

READ MORE: Precision Medicine, Population Health Share Strategies and Goals

"Our mobile phlebotomy, medical and health data collection services will extend the reach of the research team and lessen the burden on participants, while our national coverage will help researchers engage study participants who are homebound or far removed from partner sites," said James D. Calver, Chief Executive Officer of EMSI.

The 2016 survey found that some patient groups, including older and rural individuals, would likely be more difficult to engage than those in urban areas. 

The poll also revealed that 77 percent of respondents who supported the precision medicine initiative but didn’t want to participate believed that contributing their data would take too much time and effort.

Extending participation options into the home environment may help the NIH overcome some of these challenges and secure a more diverse patient population from a broader range of socioeconomic backgrounds.

Variety is particularly important for precision medicine researchers looking to fill niche clinical trials or study rare conditions.  In order to find enough individuals to meet very selective criteria, researchers must have access to extremely large datasets that are more likely to contain patients who fit narrowly-defined guidelines for inclusion.

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“We want the All of Us community to be as diverse as our country, so that the knowledge we gain from the research will benefit everyone — including groups that haven’t been well represented in biomedical research before,” said Eric Dishman, director of the All of Us Research Program at NIH, when unveiling the initiative’s new name.

“Many organizations have expressed interest in working with us to spread the word. This opportunity will support grassroots efforts across the countries, which are critical to the program’s success.”

In addition to EMSI’s mobile operations, patients will have a chance to enroll in the All of Us program through their local healthcare providers. 

This strategy has already been proven successful by several large health systems developing their own biobanking projects, including Geisinger Health System and Kaiser Permanente.  Geisinger enrolled its 100,000th participant back in April of 2016, while Kaiser Permanente had reached double that number – and planned to head towards a goal of half a million individuals.

Just a few months later, the Million Veteran Program run by the Department of Veterans Affairs announced it had signed up 500,000 participants, becoming the largest genomic databank in the world to date.

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The All of Us program is still working to get off the ground, but the successes of these similar projects bodes well for the national effort. 

The NIH has tapped the Mayo Clinic to spearhead the technical development of the biobank as well as handle sample analysis, bringing the expertise of yet another large health system to bear on the challenges of precision medicine.

“No one has tried to build a research community before that includes this many people from so many different walks of life, and we’re excited to try out new approaches, learning and making improvements as we go,” said Stephanie Devaney, PhD, deputy director of All of Us. “Our plan is to start small and build a national network of partners over time, all energized by the prospect of making real improvements to health over the long term.”

Adding mobile patient outreach to the collection strategy is likely to help the NIH reach its million-patient goals in good time while ensuring that the patient cohort is as diverse and varied as possible to produce the maximum benefits for researchers and data analysts.

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