Harmonizing Clinical Data Collection in Community-Based Treatment Programs for First-Episode Psychosis
Location: Bethesda, MD
The National Institute of Mental Health (NIMH) plans to develop an Early Psychosis Intervention Network (EPINET) among Coordinated Specialty Care (CSC) programs for first-episode psychosis (FEP). EPINET will be based on the principles of “learning healthcare,” in which science, informatics, and organizational culture are aligned to achieve continuous improvement, innovation, and implementation of best practices in clinical services.
To achieve these goals, learning healthcare systems employ standard clinical measures, uniform data collection methods, integration of data across service users and settings, and rapid analysis and reporting of pooled data to clinicians, patients, and scientists.
The purpose of this meeting was to understand stakeholders’ perspectives on opportunities and barriers to adopting a harmonized approach to (1) clinical assessment, (2) data collection, and (3) evaluation of services and outcomes across CSC programs, as envisioned in EPINET. A secondary objective was to learn how key aspects of CSC are currently measured in community-based CSC programs.
Meeting participants were representatives of states with multiple CSC programs (i.e., ≥5), including California, Illinois, New York, Ohio, Oregon, Texas, and Virginia; thought leaders from other states where academic research programs collaborate with CSC clinics on FEP measurement issues, including Arizona, Connecticut, Massachusetts, Maryland, Michigan, and Pennsylvania; federal agencies invested in the implementation of CSC, including the Substance Abuse and Mental Health Services Administration (SAMHSA), the Centers for Medicare and Medicaid Services (CMS), and the HHS Office of the Assistant Secretary for Planning and Evaluation (ASPE); and private research organizations active in this space.
The first day focused on identifying which treatment outcomes and processes should be measured in CSC programs; the second day focused on how these outcomes and processes should be measured. Both topics were addressed throughout the meeting as they are closely related.
The meeting format consisted of the following:
- Presentations on NIMH’s EPINET initiative; the natural course, treatment, and outcomes of FEP; standardized measures of FEP clinical features and key outcomes; and a representative model for a CSC learning healthcare system.
- “Think Tanks” that guided small-group brainstorming sessions on core elements of FEP clinical assessment, challenges in implementing standardized data collection in community clinics, and current efforts by states to harmonize clinical data collection in existing community-based CSC programs.
- Large-group discussion following all presentations and Think Tanks.
Several themes emerged around harmonizing clinical data collection in CSC programs:
- “Early adopter” clinics expressed considerable enthusiasm for the learning healthcare model; this enthusiasm can be leveraged to support standardized assessment, quality improvement efforts, and participation in research across existing CSC programs.
- Measurement-based care (i.e., standardized assessments, treat-to-target methods, systematic monitoring of key outcomes, and real-time feedback to clinicians about patients’ progress) represents a significant change for many community clinics. Administrators and policy makers must work to remove barriers to standardized data collection, and incentivize the accuracy of assessments, data-driven continuous quality improvement, and research participation in CSC programs.
- A core FEP clinical assessment battery should include measures that are valid, feasible for real-world treatment settings (i.e., pose minimum burden to patients and clinicians), and have high utility to multiple CSC stakeholders. Information derived from assessment measures should be relevant to clinicians, program administrators, and policy makers, and include outcomes valued by patients and family members. Core measures should take into account the racial, ethnic, and cultural diversity of populations served.
- The PhenX Early Psychosis Clinical Services Collection identifies 19 promising measures for CSC adoption based on positive psychometric properties, low participant burden, and high utility. Several important FEP domains are not covered in the PhenX collection, however, including Duration of Untreated Psychosis (DUP), hospital episodes, crisis services, and school and work participation.
- SAMHSA already requires states to report on several National Outcome Measures (NOMS) domains as part of the Community Mental Health Block Grant (MHBG) program, including patients’ school and employment status, criminal or juvenile justice system involvement, housing situation, and admission to state psychiatric hospitals. Existing data collection systems such as NOMS and the Patient-Reported Outcomes Measurement Information System (PROMIS) could be leveraged to standardize clinical data collection across CSC programs.
- Participants described several innovative approaches that could advance case ascertainment (i.e., accurate diagnosis of FEP) and measurement-based care in CSC programs (i.e., longitudinal assessment), while at the same time reducing clinician and service user burden. Examples include:
- Centralized remote assessment that employs highly trained interviewers, connected to CSC programs via live 2-way video, to reliably determine FEP diagnosis, DUP, baseline symptoms and functioning, and treatment outcomes over time.
- Approaches that employ Item Response Theory and Computer Adaptive Testing to reduce the number of items required to measure patient-reported outcomes reliably.
- Web-based questionnaires and/or mobile communication apps for collecting self-report and behavioral data related to patients’ psychosocial functioning.
- Great variation exists across CSC programs and states regarding capacity for standardized clinical assessment and data management. Common challenges include too few staff trained in standardized assessment or data collection/management, high turnover among staff with specialized skills, limited time for assessment, and uncertain funding for these activities.
Participants recommended that NIMH continue to engage key stakeholders—including service users, family members, clinicians, peer providers, healthcare administrators, and researchers—in all aspects of EPINET. States already collecting, integrating, and evaluating data from multiple CSC sites are natural partners in advancing the learning healthcare model, and can provide valuable lessons regarding “real world” data collection, data management, and quality improvement efforts. Finally, additional research is required to develop valid, reliable, and low-burden measures of FEP symptoms, DUP, functioning, and recovery that are practical for community CSC programs.