Date: 11/02/2015

Cancer patients discussing treatment options with their doctors may be concerned with how significant the related fatigue or nausea will be, or how long symptoms will last. But to date, science hasn’t been much help: Documentation of cancer patients’ experiences is recorded in numerous formats that make comparisons difficult. Without a standard way of displaying such data, doctors are left with masses of information 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 graphic presentations to see which are most easily understood by clinicians and patients, to “put the patient voice in patient-centered care” through better communication about outcomes.

To include a large, varied group of 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 90 cancer patients and 40 clinicians have been interviewed by a Johns Hopkins research coordinator. 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. Next, they’ll 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, which values studies with broadly applicable findings.

The research network, created in 2009 within Johns Hopkins’ 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.

Thirty studies have been conducted through the network to date, and seven are open and enrolling now, says Adrian Dobs, the network’s director. Some research originates with a Johns Hopkins investigator, while in other cases a company seeks an investigator to lead testing of a new drug, treatment method or piece of equipment. The network is groundbreaking in that it combines the research prowess of Johns Hopkins with the patient diversity of community hospitals.