By Regina Greer-Smith
Now more than ever, patients, caregivers, and others across the healthcare community are having a meaningful say in what traditionally has been the domain of scientists. Today, these diverse voices are helping to decide which research questions to study and which outcomes to focus on.
Considering the perspectives of patients and other healthcare decision makers throughout the research process will yield results far more relevant for everyday care, such as how different treatments affect quality of life and how well patients function on a daily basis. This is especially important in today’s fast-changing healthcare environment.
Our healthcare system is working to be more patient-centered, effective, and able to deliver maximum “value” to all. That makes the bond between patients and those who care for them more vital than ever, as patients have greater responsibility to decide with their clinicians which healthcare options are best for them and their families. They can do that well only if they have reliable, useful information that answers the questions that matter most to them.
That’s where the Patient-Centered Outcomes Research Institute (PCORI) comes in. An independent, private, non-profit organization created by Congress in 2010, PCORI funds health research guided by patients and other healthcare stakeholders. Its goal is to help people make informed healthcare decisions by focusing on the outcomes they value.
PCORI is empowering individuals to be true partners throughout the research process, asking their advice on the research questions to study, requiring they be members of study teams, and seeking their help in evaluating and disseminating study results. PCORI has built trust within the research community and has enabled those who have not been previously included to participate without fear.
This is the most important thing we can do to improve research and care: engage, support and address the needs of underserved communities. Regardless of your race or ethnicity, religion, socio-economic status, gender, age, disability, sexual orientation, gender identity or geographic location, you deserve to be heard.
The idea is not for patients to replace the expertise of researchers who have produced remarkable advances but to recognize that patients’ voices can enhance studies by providing fresh, timely knowledge about their preferences, lived experiences, and the challenges of addressing complicated health issues every day.
As an African American woman, who has dedicated her career to building collaborations that improve health among minority and underserved communities, I know about the value of this approach first-hand. I became a PCORI volunteer in June 2012, and I have served a 4-year term on PCORI’s Advisory Panel on Patient Engagement. Among many other roles, I am a member of the PCORI Clinical Research Data Network CAPriCORN, which is an unprecedented collaboration across Chicago’s healthcare institutions.
Chicago suffers from significant health disparities due to variable access to high-quality care and differences in socioeconomic resources across its metropolitan area. Without PCORI, CAPriCORN’s work to engage and care for the whole community through research would not be possible. Without inclusive research like this, we cannot make meaningful progress in our shared goal to reduce health disparities, improve health outcomes and better use our limited health care resources.
This new approach to health research has been a long time coming. For more than two decades, patients have been calling for greater involvement in and control over their care and research involving them and their conditions. “Nothing about me without me” has been the mantra. It’s a simple and compelling demand for health care to be truly patient-centered.
Since 2012, PCORI has invested almost $1.25 billion in studies comparing different approaches to care for a range of diseases and conditions that place heavy burdens on individuals, families, and the healthcare system as a whole. Through the work of PCORI and others who increasingly take a similar approach in research, patients like me now have a seat at the table with researchers, clinicians, hospitals, employers, insurers, and industry – everyone who has a stake and role in how we study, provide, and evaluate care.
That’s how it should be -- a collaborative, democratic process, where everyone can participate in making important decisions and be represented by people who share their views. We’ll all be healthier as a result.