Precision Medicine Research Tools for Investigators
|Other JHU Precision Medicine Tools for Investigators|
| All Johns Hopkins Medicine researchers have access to precision medicine tools and resources that can help them learn more about diseases and how they affect individual patients. PUBLISHED IN DOME MAY/JUNE 2019|
Step 1: Gather Data
Step 2: Store and Analyze Data
Step 3: Bring to Clinic
Bringing Precision Medicine to All of Johns Hopkins Medicine
Precision medicine has the power to transform the understanding and treatment of diseases, says Antony Rosen, vice dean for research. And this is a particularly promising moment for harnessing big data, he says, because high-powered computers can analyze newly available troves of information, including data from genetic sequencing, heart monitors, images and electronic medical records. New technologies make it possible for researchers to combine and analyze data that before was hard to quantify, such as text from clinic notes.
“Our goal is to give researchers access to data, and a space and tools to work with the data safely so they can develop new algorithms that can be put back into the Epic electronic medical records system to improve clinical decisions and patient care,” says Paul Nagy, deputy director of the Technology Innovation Center (TIC).
In 2017, experts from Johns Hopkins Medicine and the university’s Applied Physics Laboratory began work on PMAP, a secure online repository that so far contains more than 20 billion pieces of information from sources including Epic and disease registries.
“PMAP is best suited for trying to look for relationships in pieces of data that were difficult to compare before,” says Geoff Osier, PMAP project manager at the Applied Physics Lab.
SAFE, another new resource, provides tools for analyzing that data without compromising patient privacy. The TIC’s software engineers and designers can help clinicians create tools such as decision support calculators to guide treatment based on their research.
The new system removes barriers to data collection, explains Valerie Smothers, Data Trust administrator. “Our mantra is, make the right thing to do the easy thing to do,” she says of the Data Trust, which provides technical infrastructure, policies and standards that guide the use of Johns Hopkins Medicine data.
“When projects are using SAFE or PMAP, they’re preapproved by the Data Trust by default, unless they are sharing data outside the institution,” says Smothers. That means most researchers don’t need approval from the Data Trust when they get Institutional Review Board approval, skipping a step that sometimes takes months.
Nine Johns Hopkins research programs designated as Precision Medicine Centers of Excellence (PMCOEs) were the first to work with PMAP. The first PMCOEs were prostate cancer and multiple sclerosis centers in 2017. Seven more PMCOEs were added in 2018, including the pancreatic cancer, scleroderma and ARVD/C centers. Johns Hopkins leaders hope to designate as many as 50 PMCOEs by decade’s end, offering those centers project management and technical support as they combine research and clinical missions.