VCU Researchers to Launch Pilot Study to Examine Patients’ Preferences for Informed Decision-Making

Virginia Commonwealth University School of Medicine has received one of 50 research funding awards from the Patient-Centered Outcomes Research Institute (PCORI) to improve how patients make decisions about their health.

The VCU Department of Family Medicine received more than $649,000 from PCORI’s Pilot Projects Program to explore patients’ preferred approach to making complex health care decisions. The project takes advantage of an online tool – an interactive personal health record called MyPreventiveCare – developed by faculty in the Department of Family Medicine and currently used by nearly 30,000 primary care patients throughout Virginia to make decisions about preventive health care.

The PCORI study enables VCU investigators to add a module to this tool that will survey approximately 3,000 patients about the ways they used information to make complex medical decisions and the type of assistance they want from their clinicians. The researchers will then follow patients into the clinic, audiorecord encounters and administer surveys after the visit to study patients’ experience as they discuss decisions with clinicians.

The award is part of PCORI’s Pilot Projects Program, which will address a broad range of questions about methods for engaging patients in various aspects of the research and dissemination process.

“Despite living in an information age, we know relatively little about how patients want to use information to make decisions,” said Steven Woolf, M.D., professor in the Department of Family Medicine and director of the VCU Center on Human Needs, who will lead the study at VCU.

“Quite often, we suspect that patients are looking for more than facts and figures to resolve their uncertainty, or frankly may be overwhelmed by the sea of information that is now at their fingertips.”

According to Woolf, the study is one of the first comprehensive efforts to seek the patient’s perspective on how they can best be supported in making decisions. It will use mixed methods – gathering quantitative and qualitative data – and will involve an impressive interdisciplinary collaboration.

Researchers in the Department of Family Medicine will be joined by co-investigators in the VCU Departments of Epidemiology and Community Health, Social and Behavioral Health, Biostatistics and VCU School of Business. The team also will receive input from an external advisory panel composed of experts on decision science from throughout North America, a patient and provider advisory group and stakeholders from three major health systems.

PCORI is an independent, non-profit organization whose establishment was authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions.

“The PCORI mission is to help patients make informed health care decisions, but how should comparative evidence be presented to patients?” said Woolf.

“What assistance do patients want? Where does science rank relative to other considerations? Do patients want detailed facts of simplicity, fact sheets or testimonials? This study turns to patients for an answer to fundamental questions about informed decision-making and shared decision-making. It’s a credit to PCORI that they made such research a priority before funding conventional comparative effectiveness studies,” he said.

Woolf said the project will focus on decisions made about cancer screening.

PCORI is committing $30 million in funding over two years for the pilot projects, which were selected by PCORI ‘s Board of Governors through a competitive, multi-stage review process. Proposals were evaluated for their scientific merit and rigor and fit within eight areas of interest outlined in the pilot projects announcement.  

Awards, which were approved for research institutions in 24 states and the District of Columbia, include those for projects designed to develop a range of tools and techniques aimed at improving patient-centered care and decision-making, to create new patient-centered care measures and to improve delivery of patient-centered counseling and care in various health care settings.