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Dome - Casting a Wider Research Net

Dome December 2014

Casting a Wider Research Net

Date: December 5, 2014

Johns Hopkins Clinical Research Network increases opportunities to study patients beyond its own health system.

STRENGTH IN NUMBERS: Claire Snyder pools feedback from patients to pick up trends and track outcomes.
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STRENGTH IN NUMBERS: Claire Snyder pools feedback from patients to pick up trends and track outcomes.

Imagine you’re a cancer patient discussing treatment options with your doctor. Two regimens are equally effective, but one increases fatigue, while the other causes nausea. You ask: “How bad will the fatigue or nausea be? How long will the symptoms last? Will they improve over time?”

To date, science isn’t much help: Documentation from cancer patients’ experiences is recorded in numerous formats that make comparisons difficult. Patients might be asked to rank pain on a scale of 1 to 100, with 100 being no pain at all, and to rank nausea on a scale of 1 to 6, with 6 being very nauseated. Without a standard way of displaying such data, doctors are left with masses of information that are almost impossible to understand, much less communicate.

Claire Snyder aims to change that. Working with co-principal investigator Michael Brundage of Queen’s University in Canada and colleagues at Johns Hopkins, the associate professor of medicine is testing several graphic presentations to see which are most easily understood by clinicians and patients. The goal, she says, is “putting the patient voice in patient-centered care” through better communication about outcomes.

To include a large and varied group of research participants, Snyder is conducting her study through the Johns Hopkins Clinical Research Network, which provides access to more than 8 million patients at five community-based hospitals. Her work, which began in March 2013, encompasses most of the  hospitals that are network members—Inova Health System in Virginia, Anne Arundel Medical Center, Greater Baltimore Medical Center and Peninsula Regional Medical Center in Salisbury, Maryland—as well as Sibley Memorial Hospital, Suburban Hospital, Johns Hopkins Bayview Medical Center and The Johns Hopkins Hospital.

To date, about 70 cancer patients and 30 clinicians have been interviewed by a Johns Hopkins research coordinator who travels to all of the sites. Preliminary findings suggest that both patients and clinicians prefer formats like line graphs that show trends over time. Now, the research team is working with some study participants to quantify the effectiveness of techniques like color shading to show how patient-reported outcomes change over the course of treatment. The next step is to test the new graphic formats with a broader audience of clinicians and patients.

Participation in the network may have helped Snyder secure $700,000 in funding over three years from the Patient-Centered Outcomes Research Institute (PCORI), which values studies with broadly applicable findings. Her award was in the first round of funding from this nongovernmental organization created in 2012 as part of the Affordable Care Act to improve patient care and outcomes.

A New Kind of Partnership

The clinical research network, created in 2009 within the Institute for Clinical and Translational Research, also includes Reading Hospital and Reading Health System in Pennsylvania as well as Howard County General Hospital and All Children’s Hospital, both part of Johns Hopkins Medicine. It exemplifies Johns Hopkins Medicine’s strategic priority to advance biomedical discovery by increasing opportunities for research beyond its own health system.

Currently, 11 studies are underway through the network, says Dan Ford, institute director and vice dean for clinical research in the school of medicine. Some of the research originates with a Johns Hopkins investigator, while in other cases a pharmaceutical company seeks an investigator to lead testing of a new drug, treatment method or piece of equipment.

“Research is no longer just in one clinical research center in the hospital,” Ford says. “We really have some great community hospital partners that are helping us move beyond the traditional clinical research system.”

While research partnerships are not new, the research network is groundbreaking in that it combines the research prowess of Johns Hopkins with the patient diversity of community hospitals.

With other types of collaborations, each institution secures and manages its own funding, and investigators can share leadership. But in the Johns Hopkins research network, the entity takes the lead on funding and research, and it serves as the institutional review board of record for all network member institutions, explains Adrian Dobs, director of Johns Hopkins’ research network.

As lead investigator, the Johns Hopkins physician is ultimately responsible for all aspects of the research. As a result, grantors such as the National Institutes of Health or PCORI can award and monitor a single grant for research across several sites. Pharmaceutical companies have the advantage of working with a single review board and point of contracting, speeding the startup of their clinical trials.

“The marketing pitch that we make to the sponsoring world is: ‘Bring your question to us, and we will investigate through one centralized process,’” says network co-director John Niederhuber, executive vice president of Inova Health System and adjunct professor of oncology at Johns Hopkins. “Our goal is to provide diversity of subjects, greater access to clinical trials by the community and a more rapid completion of the study for our sponsors.”

Multiple Benefits

The network offers a triple win: The research benefits from a diverse pool of subjects, the partner hospitals benefit by gaining access to cutting-edge treatments and ideas, and patients benefit by receiving those new treatments at their local hospitals.

The arrangement is particularly valuable for studies with an intrinsically limited participant pool. Breast Cancer Program Co-Director Vered Stearns, for example, is leading a study assessing a pharmaceutical treatment for breast cancer patients with BRCA1 or BRCA2 genetic mutations. “Each center may have only a handful of women that meet the criteria,” she says. Through the network, however, the study was open to women at Anne Arundel Medical Center and Greater Baltimore Medical Center.

Another network study led by Stearns that includes women from Greater Baltimore Medical Center is testing the effectiveness of a weight-loss program on women with early-stage breast cancer.

 —Karen Nitkin

Read more about the strategic priority for biomedical discovery online at



Managing Research Collaborations

To smooth the process of working across institutions, each member of the Johns Hopkins Clinical Research Network has a coordinator who splits time between Johns Hopkins and an assigned community hospital to help identify, prioritize and implement the network’s research. 

Sandra Schaefer, a registered nurse with a background in oncology, has been a network coordinator at Johns Hopkins since 2009, first at Anne Arundel Medical Center and now at Inova, a sprawling health system with five hospitals and numerous affiliated private practices. Teleconferences between Johns Hopkins, research network investigators and their study teams are held at least once a month to assure research oversight and compliance, she says. These meetings also address recruitment problems and eligibility questions, as well as problems with study procedures.

“You’re taking research from a huge academic setting and going to a community hospital with fewer resources,” Schaefer says. “Every day you have some sort of hurdle or new challenge. But the fact that the patients in that geographical area have access to cutting-edge research makes the effort worthwhile.”