A US institute focused on comparative-effectiveness health-care research has announced the winners of its first round of grants for evidence-based studies on treatment outcomes. The Patient Centered Outcomes Research Institute (PCORI) is funding 50 ‘pilot projects’, totalling US$30 million, that will set the stage for their future research agenda by identifying promising methods and data gaps.
“These projects will improve our understanding of how to conduct research and disseminate research findings in ways that are more responsive to the needs of patients and the health care community,” said PCORI executive director Joe Selby in a statement on 18 June.
The PCORI, a child of the Obama Administration’s 2010 health-care reform law, has slowly come into being amid the turmoil of a fiercely partisan debate on health-care reform. Its aim is to reduce costs in the US health-care system by identifying which treatments are more effective and better-suited to individual patients. However, opponents of the law equated the notion of evidence-based medical care with the image of “death panels” of health officials controlling access to treatment.
The PCORI says that the 50 pilot projects will help it discern the best strategies for determining comparative effectiveness and also lead to the development of new methods that will inform future grants.
Some of the funded projects:
- Researchers at the University of California in San Francisco will use $599,966 to develop a “BioScreen” — a digital platform for clinical and genetic biomarker data updated in real time — that patients with multiple sclerosis and their health-care providers can easily access. The goal: to improve patients’ education regarding their disease progression and therapy options, so they can make more informed decisions.
- With $425,286, a team at the Medical University of South Carolina in Charleston will examine negative outcomes, other than symptoms, of rare genetic diseases — such as lack of affordable drug or therapy options, insurance concerns and social stigma. In local and virtual communities of patients with alpha-1 antitrypsin deficiency, they’ll try to measure these burdens.
- A research group at Children’s Hospital of Philadelphia in Pennsylvania received $668,190 to figure out how to weigh the views of children with autism with those of their parents in treatment decisions and outcome preferences.
- At Ohio State University in Columbus, a $653,014 project will study virtual-reality gaming as a potential cost-effective neurological rehab therapy for stroke patients who suffer from chronic hemiparesis, or weakness on one side of the body.
“We were very excited about the fact that grant applications were so diverse,” says Christine Goertz, a member of PCORI’s governing board and vice-chancellor for research and health policy at Palmer College of Chiropractic in Davenport, Iowa. “About 75% of the applications are looking at the effectiveness of research tools. A little more than half are looking at decision-support tools. About 20% are looking at special or rural populations. Around 35% are looking at research in dissemination and communication strategies.” Goertz notes that PCORI will continue to use the pilot projects as a “learning laboratory” for how to conduct and support outcomes research in the future.
The awards announcement comes just ahead of a long-anticipated judgement about the law that established PCORI. Within days, the US Supreme court is expected to render its decision on legal challenges to the 2010 Patient Protection and Affordable Care Act. The court may uphold the act, overturn it entirely or strike down certain sections.