Researchers Say Their Path To Better Health Starts With Patients’ Input

It’s a program set up by the federal health law that many people have never heard about: an independent organization charged with bringing health care professionals and patients together in cooperative research ventures to find the best treatments for ailments ranging from diabetes to depression.

The Patient-Centered Outcomes Research Institute (PCORI) already has funded 468 studies, and last month opened the second phase of a program to create research networks covering specific diseases and involving millions of patients across the country.

The institute’s work, known as “comparative effectiveness research,” poses deceptively simple questions to find out vital information about which therapy or medication works best in the real world. Institute research goes beyond clinical trials and so-called “best practices” and extracts evidence from the individual experiences of massive numbers of patients.

Early results are encouraging. For example, many older patients fear the side effects of blood thinners, even though they decrease the incidence of stroke by 50 percent, but an institute study of 12,500 stroke patients with atrial fibrillation found that the use of the blood thinning drug warfarin worked just as well without causing undue bleeding for patients over 80 as it did for younger patients. Another study of children suffering from osteomyelitis, a bacterial bone inflammation, found that kids could take antibiotics orally instead of through an IV, a complicated and unpleasant procedure with risk of infection. The study reached that assessment after reviewing data from more than 2,000 children and adolescents treated at 36 children’s hospitals that have various protocols for handling the disease.