Baltimore, MD—The way patients, providers, and researchers approach healthcare will need to change to accommodate a growing shift toward precision medicine, according to Eric Dishman, Director, Precision Medicine Initiative (PMI) Cohort Program, National Institutes of Health (NIH), and a cancer survivor, who delivered the keynote address at the 2016 Leaders in Biobanking Congress.
“After battling a rare form of kidney cancer for 23 years—and advocating personally for more than 1000 other cancer patients along the way—he became cancer-free thanks to early access to precision medicine that clarified the right treatment plan for him,” said NIH Director Francis S. Collins, MD, PhD.
The PMI Cohort Program aims at accelerating biomedical discoveries by assembling ≥1 million volunteers to participate in national research cohorts by contributing their health data. Announced by President Obama in 2015, PMI’s mission is to “enable a new era of medicine through research, technology, and policies that empower patients, researchers, and providers to work together toward development and individualized care.”
Patient participation is a key component of the PMI Cohort Program, Mr Dishman said. In the current model, healthcare is often targeted to the average patient rather than to an individual specific patient. In addition, a patient’s medical problems are determined through trial and error and can take years to determine.
According to Mr Dishman, the future will involve more individualized healthcare that will empower patients to improve their outcomes by utilizing data. Much of this hinges on the American population’s willingness to volunteer to contribute their own health data, he said.
“Participants in the PMI Cohort Program will be true partners—not patients, not subjects—in the research process,” Mr Dishman explained. This will give patients a voice concerning what types of data are collected, what research is conducted, and how those data are used.
Abundant Information for Providers
Mr Dishman said that much of what providers currently do is well-intentioned, uninformed guesswork. They often lack the data needed to make informed treatment decisions, and because many providers are already overworked, putting in the overtime needed to gather medical records from multiple sources to create an individualized approach for a patient is not always easy or not possible.
With the advent of the PMI Cohort Program, Mr Dishman hopes that providers will have an abundant amount of information that will be easily accessible. This, he hopes, will result in “quicker diagnoses, [and] more effective prevention and treatment strategies.”
Bridging the Gap Between Researchers
Perhaps the most important aspect of the program is to create a new model of research that is rich in data and increased knowledge.
“We need a new approach to research to accelerate precision,” Mr Dishman stated. Some of the problems in the current healthcare research model include:
- Significant amount of time and money spent on building information technology systems
- Siloed data sources and funding sources
- Challenges in gathering large sample sizes.
The new program will focus on increased data-sharing and cost-savings that should accelerate research findings. This will require portable and easily accessible data to be shared between researchers.
Mr Dishman said that data collection will need to start small and grow over time to keep pace with evolving science and technology. The program will initially collect a limited set of standardized data from various sources, including:
- Health questionnaires
- Electronic medical records
- A baseline physical evaluation of volunteers
- Wearable and mobile technologies
- Environmental data
- Biospecimens (eg, plasma, serum, DNA, red blood cells).
Through this data collection, researchers hope to use DNA to understand pharmacogenomics better, measure environmental and genetic factors to help estimate risk, discover biologic markers in blood or urine samples, and identify biologic factors that contribute to health disparities.
Preparing to Launch
According to Mr Dishman, there is no set launch date, but the program will start with phased implementation, allowing for adjustments to be made as new technologies and protocols are developed. It could take as long as 4 years before the program acquires the 1 million volunteers it desires.