As a practicing psychiatrist who has been involved in national policy discussions over the years, I’m pleased to see the dialogue under way in clinical, advocacy and policymaking circles about improving mental health treatment and services. This includes several legislative proposals working their way through Congress.
I’m most encouraged by the growing focus in these conversations regarding the importance of relying on evidence and best practices in improving care. It’s essential that the treatment options we suggest to our patients are based on the best information we have for what works. I know from experience this can be a particular challenge in mental health, given the complexities of any particular disorder.
That’s why, as both a psychiatrist and chairperson of the Board of Governors of the Patient-Centered Outcomes Research Institute (PCORI), it’s essential to me that we keep the concerns and outcomes most important to patients firmly in mind as these discussions continue. This is critically important not only in the treatments we suggest but also in the research we conduct to inform those care options. That’s the only way I know to offer patients, their families, and all of the clinicians who work with them the care options they’re likely to find useful.
This is the approach PCORI has taken since we first began funding research under our Congressional mandate to produce evidence that patients, clinicians, insurers, employers and others can use to make better-informed health and healthcare decisions.
PCORI supports comparative clinical effectiveness research (CER). These studies are designed to compare two or more care options to determine which work best, for whom, under which circumstances. We focus on outcomes and questions that matter most to patients – including side effects, quality of life, and ability to work. To make sure that focus carries through in everything we do, PCORI engages patients and other stakeholders, like caregivers, clinicians, insurers, employers, life sciences industry representatives, and policymakers, throughout the research process. We seek their help in selecting the topics to study, in the conduct of the research itself, and ultimately in helping to disseminate and implement the results.
Take an example from my own field. In trying to find the most patient-centered treatment for someone with schizophrenia, I might have to rely on more traditional studies that focused on determining which medication is better at eliminating a patient’s psychotic symptoms, such as hallucinations. This is certainly important for clinicians, patients and their families to know. But a patient might be more interested in whether a medication is better able to help her function in her daily activities, such as working or caring for children, as opposed to just controlling hallucinations.
The growing body of high-quality patient-centered outcomes research that PCORI funds seeks just these kinds of answers, not just in mental health, where we have dozens of projects alone, but across a range of diseases and conditions that impose a major burden on patients, their families and the healthcare system. In doing so, we’re changing the conversation about how to conduct research so that it is more useful and meaningful in the real world – to patients and those who care for them.
We’re not alone in this effort – others within the research, regulatory, health system, and life sciences industry communities are engaging patients in their work. However, we believe our leadership is one of the key reasons this trend is accelerating. And we’re confident that as results of this approach become clear, its value as a path to making health research more relevant, useful and inclusive will become recognized more broadly.
We’ve already started to see some important results appear in scientific journals from our early studies, with more expected in coming years. We also look forward to the day when involving patients, their families and other stakeholders in the research process no longer will be the novel approach that PCORI’s work exemplifies but a widely adopted path to improving health services and outcomes.
Grayson Norquist is Professor and Vice-Chair, Emory University Department of Psychiatry and Behavioral Sciences, Chief of the Grady Behavioral Health Services, and Chairperson of the Patient-Centered Outcomes Research Institute Board of Governors