Dr. Moura discusses how her American Brain Foundation-funded research eventually led to a widespread adoption of patient-reported outcome (PRO) tools and the impact of the work she’s doing with the Center for Value-Based Health Care and Sciences.
At the American Brain Foundation, we know that funding research lays the foundation for future breakthroughs in diagnosis, treatments, and cures for all brain diseases. Through our partnership with the American Academy of Neurology, our Next Generation Research Grants provide support for a broad range of innovative projects from early-career researchers.
Lidia Maria Moura, MD, MPH, PhD, received a research grant funded by the American Brain Foundation in 2014. She went on to receive additional research support from the American Epilepsy Society and the Epilepsy Foundation, as well as the National Institutes of Health, to investigate epilepsy quality measures and patient-centered outcomes. She currently leads the NeuroValue Lab, is co-director of the Center for Value-Based Health Care and Sciences at Massachusetts General Hospital and is an Associate Professor of Neurology at Harvard Medical School. Her current research draws from neuro-psychiatric epidemiology and incorporates clinical, behavioral, and economic perspectives to design coordinated care delivery models for neurological care.
We spoke with Dr. Moura about how her early American Brain Foundation-funded research impacted her career as a researcher and how this project led to the development of revolutionary patient-reported outcome (PRO) tools that have since been adopted by the American Academy of Neurology. She also discusses the importance of supporting research and her current work with the Center for Value-Based Health Care and Sciences.
Dr. Moura’s responses below have been edited for clarity.
What research did the American Brain Foundation’s 2014 Clinical Research Training Fellowship enable you to work on?
The American Brain Foundation’s 2014 Clinical Research Training Fellowship enabled me to work on a project titled “Variation in quality of epilepsy care and associations with patient-centered outcomes.” In 2014-2016, we piloted and launched the patient-reported outcomes (PRO) program, which is now one of the largest real-life PRO programs in the world. Through this research I demonstrated how systematic collection of provider-reported data linked to patient-reported outcomes and other sources of data (e.g., pharmacy and claims) can help assess and improve outcomes for patients with epilepsy.
(Read more about this groundbreaking research study here.)
What are patient-reported outcomes, and why are they important?
PROs allow us to integrate the patient’s voice into their care, converting it to a quantitative measure to assess whether their condition is improving or worsening. They empower patients to express their voice in health outcomes in a quantifiable, validated manner, reducing the chance that implicit bias could skew the provider’s understanding or assessment of the patient’s symptomatology. PROs became one of our best indices of quality and value in health care, and they are now one of our most powerful tools to promote health care equity.
How did this early American Brain Foundation-funded grant open doors for additional research funding or future research projects?
In addition to protecting my time for research, the Clinical Research Training Fellowship allowed me to afford the tuition fees of my master’s degree program at Harvard. My master’s training helped me improve the quality of my research and gave me additional research skills, both of which were fundamental in applications that seed-supported the Center for Value-Based Health Care and Sciences.
Additional manuscripts I have since published with colleagues have also promoted awareness of the key challenges and disparities in care delivery—for example, uncovered gaps in patient-provider communication, social stigma with the word epilepsy, and safety issues with patients reporting seizures while driving.
What impact has this research had on your career and within your field?
My methods and instruments have been adopted by other institutions nationally and internationally. I have been invited to give talks at the American Academy of Neurology meetings since 2014. In addition, I was invited to chair or join special interest groups, subcommittees, and committees of the American Academy of Neurology, American Epilepsy Society, and American Neurological Association. After years of publishing my findings and many national advocacy efforts, systematic collection of patient-reported outcome metrics became part of AAN care quality metrics.
The Center for Value-Based Health Care and Sciences has also joined the Epilepsy Learning Healthcare System. Within this initiative, we systematically measure provider performance, patient-reported outcomes, and costs across multiple centers, while enabling researchers to run comparative effectiveness and other study designs. Specifically, I lead the data coordinating center, which brings together data from more than 15 academic institutions and several community centers.
What specific issues is your current research with the Center for Value-Based Health Care and Sciences trying to address?
The Center for Value-Based Health Care and Sciences guides clinicians, patients, and administrators towards higher value, safer, and more equitable medical care via scientific discovery, practice innovation and care redesign, and instruction of a future generation of providers and health-services scientists.
Our vision is to help develop a health care system that is sustainable and resilient during future pandemics, through economic and policy changes, and other major health care shocks such as new and expensive drugs and devices.
What would additional research funding and support enable you to accomplish right now?
In our Center for Value-Based Health Care and Sciences, I have experience in successfully implementing and evaluating practice change, and expertise in epidemiology, implementation, and validation sciences. We also host the learning health care system’s data operations—a data coordinating center for a quality improvement and implementation network of 15+ academic institutions.
However, there are multiple challenges we are trying to overcome, all of which were potentiated by the pandemic economic crisis. To list a few: paucity of essential human resources like quality improvement and program management personnel, data analysts, and post-doctoral students; lack of strategic program investments, such as performance-based incentives for participating clinicians; and limited infrastructure, including data platforms and other critical elements to support program implementation and evaluation.
Investment in the Center for Value-Based Health Care and Sciences now will bolster our ability to help clinicians, patients, and administrators towards the inevitable future of health care—one that focuses on the well-being of health care providers while rewarding every stakeholder for improved patient-reported outcomes.