Connecting Genetics and Primary Care: NorthShore’s Bold Ambitions

July 10, 2019
The health system’s new DNA10K initiative looks to improve the link between genomic data and primary care

Integrating genomic information into the day-to-day care of patients has been challenging for a variety of reasons—cost, access, knowledge about genomic information, and privacy, to name a few. But more recently, hospitals and health systems have been working to break down those barriers.

One such organization is the Evanston, Ill.-based NorthShore University HealthSystem, which recently launched its “DNA10K” initiative, a complimentary whole genome sequencing pilot program available to 10,000 eligible patients when they visit a participating NorthShore physician.

Officials attest that the program, developed in partnership between NorthShore and California-based health technology company Color, is the largest known U.S.-based genomics effort grounded in primary care. First announced at the J.P. Morgan Healthcare Conference in January 2019, new and existing NorthShore patients can opt into the program via primary care visits conducted at 11 NorthShore care sites in the Chicago area.

The program works by having eligible patients provide a blood sample, which is analyzed with results returning to the NorthShore physician within four weeks. The genomic information is made available for review with the NorthShore physician and integrated into the electronic health record (EHR) to provide detail on genetic makeup and risk factors for hereditary cancers and heart disease, as well as pharmacogenomics. In addition to consultation with their NorthShore primary care provider, patients will also have access to genetic counselors and clinical pharmacists from Color and NorthShore, officials noted.

NorthShore leaders say that patients are highly interested in this information, with more than 90 percent of participants to date learning of the opportunity via NorthShoreConnect, NorthShore’s patient portal. “Our physicians and their patients are already experiencing value from this initiative and we are seeing firsthand how this program touches patients’ lives,” says. Peter Hulick, M.D., medical director of the Mark R. Neaman Center for Personalized Medicine at NorthShore.

Indeed, since the program launched, adoption rates have been high, with more than 1,000 patients opting into the program within the first month. And, the health system’s preceding similar initiative, called DNA1K, which was open to 1,000 eligible patients last year, was deemed a success as the organization had no issues reaching that patient sample goal, Hulick notes.

Going back to some the Center for Personalized Medicine’s prior work, Hulick says that one key aspect for any such project is figuring out how to recognize which patients may benefit from genetic testing. That was the basis of NorthShore’s Genetic and Wellnesses Assessment tool (GWA), which goes out proactively to patients before their annual history and physical exam, and asks targeted personal or family-based history questions that could help uncover which patients could be eligible for BRCA testing, for example. This is the third year the health system has been using this tool, and over 100,000 patients have completed it, Hulick says.

The GWA tool is baked into NorthShore’s EHR, allowing clinicians to receive alerts that certain patients have completed the questionnaire and are eligible for genetic testing. “It not only alerts [clinicians] to that, but it also tees up the ability to order genetic tests that have been condoned with oversight from the Center for Personalized Medicine, or it refers [patients] to one of our personalized medicine clinics, as we realize not every primary care physician feels comfortable with ordering genetic tests,” Hulick explains.

Nonetheless, with the increased publicity and appeal of direct-to-consumer genetic testing, there is a growing base of patients who are proactively seeking this information, Hulick notes. “But unfortunately for most patients, that means trying to get this information outside of their health system, which poses different challenges.” As such, with NorthShore’s DNA1K initiative last fall, the goal for the program’s leaders was to engage patients who were interested in finding out if there was something in their DNA that might pose a risk, at which point clinicians can take action on that risk. “It was very successful; about 40 percent of our patients who were notified they were eligible for this pilot took us up on that offer,” Hulick says.

According to NorthShore officials, following the initial rollout of the DNA10K initiative, 93 percent of patients heard about the test from their physician or NorthShoreConnect message ahead of time, and 25 percent of patients chose to participate in the program. To date, 90 percent of participating providers have placed orders, with more than 200 patients and their providers having received the results. The data showed that 15 percent of patients tested positive for an oncologic or cardiac mutation, and more than 95 percent were found to have a variant related to how their body processes medications.

Hulick does note there are still plenty of challenges that exist for both patients and providers. For one, on the provider side, demystifying genetic information has proven to be a roadblock. “There has been a traditional gatekeeper mentality around genomic information. But in this era of medicine, I don’t think that serves us well,” he says. “The goal isn’t to make everyone a genomics expert. That’s not going to be successful, but how to you develop the tools and educational resources so they feel comfortable that the system is helping them make the right decisions?”

Meanwhile, on the patient side, there is also an education component that’s needed, Hulick contends. “Genetics isn’t destiny; it doesn’t diagnose everything, nor does it predict everything. So, recognizing the limitations of what it can and cannot do is important. Naturally, that will evolve over time as we gain more information,” he adds.

NorthShore’s leaders, some of whom are no strangers to genomics and personalized medicine—its Center for Medical Genetics has been around for more than 20 years—believe they have actually have been engaging in such approaches well before the DNA1K and 10K initiatives were originated. “It depends how you define ‘personalized medicine.’ With breast cancer treatment, we have been doing this for a long time before it became a buzzword,” says Hulick, pointing to estrogen receptor, progesterone receptor, and HER2 (human epidermal growth factor receptor 2) receptor testing on patients. “I would be challenged to find anyone who would say these aren’t standards of care. And we made personalized recommendations based on that treatment. So we are really just expanding this concept to newer discoveries,” he conveys.

What NorthShore wants to ultimately build towards, Hulick describes, is not a one-sized-fits-all approach with how people will want to interact with this information. “For some patients, they may want more information through a DNA10K initiative, and for some others, they might only want to pursue testing if there’s a targeted reason that we know of. So, that’s where a family-based history tool such as the GWA might work. And there will be some patients who don’t want to pursue this regardless, and that is their right. But we want to make patients aware of what’s available to them, and have their health system be a trusted partner in this process,” he says.

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