New peer-reviewed S&PAA study shows schizophrenia treatment success should be measured by helping people build the lives they want—not symptoms alone.
ALEXANDRIA, VA, UNITED STATES, July 27, 2026 /EINPresswire.com/ — New Peer-Reviewed Research Shows Treatment Success Means More Than Symptom Improvement for People Living with Schizophrenia
Open-access publication builds on S&PAA’s leadership in patient-focused drug development and strengthens the evidence supporting patient-centered research, treatment development, and care.
ALEXANDRIA, Va. New peer-reviewed research led by the Schizophrenia & Psychosis Action Alliance (S&PAA) finds that people living with schizophrenia experience the illness as extending far beyond the presentation of symptoms. The findings reinforce that treatment success should be measured not only by alleviating symptoms, but also by whether people have the opportunity to build the lives they want. Taken together, the findings are a critical first step in the telling of a deeply human story: behind every data point is a person striving to work, maintain relationships, pursue goals, and participate fully in life.
Published in Therapeutic Innovation & Regulatory Science, Schizophrenia Impacts and Treatment Priorities: Results of An Externally Led Patient-Focused Drug Development Meeting Survey builds on S&PAA’’s Patient-Focused Drug Development (PFDD) initiative and its landmark Voice of the Patient report, now included in the U.S. Food and Drug Administration’s (FDA) public Condition-Specific Meeting Reports webpage.
PFDD has transformed how regulators, researchers, clinicians, and industry incorporate patient experience into medical product development. Through its PFDD initiative, Voice of the Patient report, and ongoing collaboration with FDA and stakeholders across the schizophrenia community, S&PAA is ensuring that the priorities of people living with schizophrenia and their care partners are part of that evolution.
This publication represents a stride forward in translating those priorities into peer-reviewed evidence that can inform future research, treatment development, clinical care, policy, and systems of care. Incorporating the perspectives of nearly one hundred people with schizophrenia and two hundred caregivers, it highlights the multidimensional impacts of schizophrenia, key reasons for discontinuing treatment, and hopes for future treatments. Because proxy responses completed by caregivers outnumbered first-hand responses from people living with schizophrenia, future work is needed to ensure first-hand experience with medication is well-observed.
This data also builds on a broader body of patient experience evidence that has elevated community priorities—including barriers to accessing clozapine—and informed national conversations about treatment access, including FDA’s elimination of the Clozapine Risk Evaluation and Mitigation Strategy (REMS) program.
“This publication reinforces something our community has been telling us for years: meaningful progress isn’t measured only by reducing symptoms, but by whether people can pursue their goals, maintain relationships, participate in their communities, and live fulfilling lives. While these findings are exploratory and reflect the experiences of this composition of respondents, they strengthen the growing evidence that patient experience must help shape research, treatment development, and care. We’re committed to expanding participation so future research reflects an even broader range of voices and experiences, and we invite our community to help shape what comes next,” said Gordon Lavigne, Chief Executive Officer of the Schizophrenia & Psychosis Action Alliance.
Although the survey responses were collected through S&PAA’s PFDD initiative, the implications of this research extend well beyond drug development. Participants consistently identified priorities that extend beyond symptom improvement alone, emphasizing the importance of improving daily functioning, maintaining relationships, reducing treatment burden, supporting independence, and enabling fuller participation in work, education, family, and community life. Together, these findings provide evidence that can help inform future research, clinical care, treatment development, quality standards, patient engagement, family support, health system design, and broader efforts to improve the lives of people living with schizophrenia
“As a family member, I’ve often felt that the daily realities of supporting someone living with schizophrenia are misunderstood or left out of important conversations,” said Anita Fisher, caregiver and CEO of Fisher Mental Health Consulting. “Being part of this study gave me hope that our experiences are not only being heard, but are helping shape evidence that can improve research, treatment, policy, and the systems families depend on. S&PAA’s leadership in bringing patients and care partners into this work is exactly what’s needed to create meaningful change.”
“This project allowed for a collaboration of perspectives in a way that highlighted how healing can happen from everyone’s lived experience, and that this is an ongoing, evolving process,” said Paulie VonEdWærd-Benjamin, member of S&PAA’s Peer Advisory Committee.
As patient experience continues to play an increasingly important role in research, treatment development, and systems of care, S&PAA will continue expanding participation so future advocacy and patient experience research reflect an even broader range of voices, perspectives, and lived experiences.
The article is published with open access in Therapeutic Innovation & Regulatory Science, making the findings freely available to researchers, clinicians, policymakers, industry, advocates, and community members worldwide.
Article
Schizophrenia Impacts and Treatment Priorities: Results of An Externally-Led Patient-Focused Drug Development Meeting Survey
About the Schizophrenia & Psychosis Action Alliance
The Schizophrenia & Psychosis Action Alliance (S&PAA) is the nation’s leading nonprofit organization dedicated to improving the lives of people affected by schizophrenia and psychosis through advocacy, education, support, research, and strategic partnerships. Through initiatives including Patient-Focused Drug Development, S&PAA works with people living with schizophrenia, care partners, clinicians, researchers, industry, regulators, and policymakers to ensure that lived experience informs research, treatment innovation, public policy, and systems of care.
Erica Tingler
Schizophrenia & Psychosis Action Alliance
+1 330-697-3905
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