Large investments are too often made in studies that provide poor-quality evidence, are overtly biased, are not applicable to most patients, or yield results that do not address the real concerns of individuals facing clinical decisions. - Patient Centered Outcomes Research Center, JAMA, April 18, 2012
"Indeed," says Josh Freeman, M.D, on the Medicine and Social Justice blog. Using diabetes as an example, Josh explains how 'disease-orientated evidence' may show that using frequent insulin injections to keep blood sugar in a low-normal range minimizes the long-term negative effects of diabetes. However, patient orientated evidence looks more broadly at the effects this regimen may have on the person as a whole. For example, Josh asks, Does the patient find it difficult to administer more frequent injections of insulin and check their blood sugar? Do they spend a significant amount of time with blood sugar that is in fact too low?
He understands the motivation of private companies to fund disease-orientated research but hopes that through PCORI, treatment plans will look holistically at the person, including the family and community they are a part of to address social determinants of health. 'Maybe we will finally get funding for studies that provide us with more useful information for caring for actual people."
Jessie Gruman is skeptical of whether PCORI can deliver on its promise of producing evidence 'that comes from research guided by patients, caregivers, and the broader heath care community.'' Though delighted by the recognition of the importance of including patients in the process of patient centered outcomes research, she knows that 'if researchers are not required to work with us to define patient-centered outcomes and design research to measure them, they will not do so. If the signs of success of patient involvement in patient-centered outcomes research are not clearly defined (they are not now), methodological standards cannot be set to achieve them. And if researchers aren't educated about how to engage us meaningfully at each step of the process and given technical support to do so, they will be unsuccessful in conducting research that reflects our perspectives.'