A suicide attempt during her junior year in college brought Jennifer back home to live with her parents where she chose to participate in a mood disorder partial hospitalization program (PHP). Her treatment plan included group therapy and peer support services at the PHP and appointments with a psychiatrist. Through this coordinated mental health care, she and her support team accepted a bipolar II disorder diagnosis. Jennifer identified to her care team that her end-goal was to return to the university she had left and graduate.
Eric, a Depression and Bipolar Support Alliance (DBSA) advocate, recently attended a meeting with the Food and Drug Administration (FDA). During this meeting Eric shared that although he is no longer isolating himself from the community, the major depressive disorder condition he experiences is resistant to treatment. As a result, he is unable to renter the workforce as, in his words, he is “only operating on 4 cylinders instead of 8.” Although not working full-time, Eric was able to identify and articulate to his treatment team his definition of a productive life. Today, Eric is an active volunteer advocate with DBSA and other organizations.
The experience Jennifer and Eric both share is that they have had the benefit of working with a clinical care team that respects and understands the value of patient-centered outcomes. Their mental health care did not end with the mitigation of acute symptoms, but rather was designed to support them in reaching their personally-identified goals or endpoints.
Trends to put the patient first
The National Institute of Mental Health (NIMH) defines patient-centered care as “health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs and preferences and solicit patients’ input on the education and support they need to make decisions and participate in their own care.” The marriage of these two models: patient-centered care (the delivery of care) and patient-centered outcomes (understanding what’s important to individual receiving the care) got a big boost from federal mandates in the 2010 Patient Protection and Affordable Care Act (ACA). Within this law are requirements that promote patient-centered outcomes through research.
Established as a non-government, non-profit institution, the Patient-Centered Outcomes Research Institute (PCORI) provides a working definition of patient-centered outcomes research. One of the four key questions is “what can I do to improve the outcomes that are most important to me?” The reply is that patient-centered outcomes research “is inclusive of an individual’s preferences, autonomy, and needs, focusing on outcomes that people notice and care about such as survival, function, symptoms, and health-related quality of life.”
PCORI intends for research projects to be driven from the bottom up (from the people), not the top down (from the researchers). Instead of researchers deciding what needs to be researched and applying for grants to complete their projects, individuals and organizations representing them (such as DBSA) provide input to PCORI. This is accomplished through a series of stakeholder meetings. Once PCORI has published the patient-identified areas of interest, institutions submit proposals. PCORI awards grants to the institutions that best meet the patient-identified research questions.
Advocacy keeps the momentum going
While movement towards patient-centered health care is encouraging, sustaining the movement will be best realized when individuals take an active role to support these trends. This includes:
- Self-Advocacy: Share with your care team which outcomes are important to you and insist that the care team treat to those outcomes. If they are unwilling, you may wish to consider finding a care team that supports patient-centered outcomes.
- Government Advocacy: Inform your elected officials and government agencies of your support for patient-centered care. Send an email to your congressional representative and senators asking them to continue funding PCORI. When doing so, share your own personal story about how a focus on patient-centered outcomes made or could have made a difference in the quality of your care and life.
- Research Advocacy: Participate in PCORI research projects. Patient-centered outcomes research can’t take place without individuals who are willing to participate. The MoodNetwork can be a place to start. It’s easy to register and, even though you are not required to participate in any research projects, you will be kept informed of upcoming opportunities.
Patient-centered outcomes produce results
Jennifer reached her self-identified endpoint of returning to the university she had been previously attending. Her care team supported her and highly recommended to the university’s review board her reinstatement and participation in all campus activities. Upon return, Jennifer started an Active Minds chapter, was an outspoken mental health advocate, and graduated with honors.
Eric is still active with volunteer work. He recently submitted an application to participate in the FDA’s Prescription Drug User Fee Act Stakeholders meeting and was accepted. He expects to be attending monthly meetings soon. Eric’s aim is to influence FDA policy to be more inclusive of patient-centered outcomes.
- How has your mental health care team worked with you to achieve outcomes from treatment that are important to you?