“We were not interested in proposals that simply said, 'We will form an advisory committee with three patients and we will speak to them once a year,'” Selby said. “We wanted patients involved in both the planning and the research. And we also want to know that proposals made sense from the patients' point of view.”
While PCORI had initially designated approximately $26 million for an expected 40 awardees, the high degree of interest in the program and the large number of high-scoring applications impressed reviewers and persuaded them to expand the program, Selby said.
The winning projects are based in 24 states and the District of Columbia, and address myriad topics, including how to more effectively involve patients in depression management and how to incorporate parents' preferences in vaccine-related decisions.
Researchers at Florida Atlantic University, for instance, were awarded $682,686 for a project that looks at ways to involve nursing home residents and their families in decisions about transfers to acute-care hospitals. Their proposal was an extension of an existing program already in use at the university, called Interact, or Interventions to Reduce Acute Care Transfers.
“Interact is fairly detailed and complex, but we did not include any interventions specifically for patients and families,” said Ruth Tappen, a professor in Florida Atlantic University's college of nursing in Boca Raton, and the principal investigator of the PCORI project. “We saw the PCORI grant as the perfect opportunity to add a tool or guide that helps nursing home residents and their families make those decisions.”
Tappen says she and the other researchers plan to interview a range of stakeholders, including patients, family members, nurses and social workers. “We'll get their perspectives and create the decision-aid tool,” she said. “We'll build it using what they tell us.”
Researchers at the University of Arkansas for Medical Sciences in Little Rock received $640,118 in PCORI funds for a project that addresses the mental health needs of black patients in the Arkansas Delta region.
Led by Dr. Jan Greer Sullivan, a professor and psychiatrist at the university, and carried out in partnership with the Tri-County Rural Health Network, a local health advocacy group, the project will evaluate two different approaches to gathering community perspectives about mental health issues.
“I think PCORI is really pushing the envelope,” Sullivan said. “They, more than any other funding agency, really seem to be concerned about the end users' input and making sure the work is patient-centered.”
PCORI's approach also garnered praise from comparative effectiveness research experts. Mary Politi, an assistant professor of public health sciences at Washington University School of Medicine, St. Louis, said the pilot grants are a good way to get patients involved and to focus on what really matters to them, such as pain management, mobility and other quality-of-life issues.
“Comparative effectiveness research looks at how two or more interventions affect patients, but if we don't know what outcomes are important to them, it doesn't really work,” said Politi, whose own research has looked at patient-provider communication and patient empowerment in clinical decisionmaking. “Starting by engaging patients is a really important step.”
And with the pilot grant projects set to begin in July, PCORI has now turned its attention to actual comparative effectiveness research. On May 22, the organization announced its first primary research funding opportunities, totaling $120 million. PCORI received nearly 1,300 letters of intent and is anticipating receiving just over 1,000 applications, Selby said.