The U.S. drug overdose crisis and the overall increase in addiction and substance misuse is spurring demand for treatment as well as the troubling growth of poor-quality or fraudulent services. Many patients and caregivers do not have the information they need to make informed decisions about treatment and support services, leaving them at greater risk of the harmful consequences of addiction.

Underlying these problems is another critical gap: what outcomes are important to patients? Community Catalyst proposes a national project to increase the voice of people with substance use disorders (SUD) in outcomes research so they can help define research topics/methods and assist with dissemination/use of results.

Partnering with Faces & Voices of Recovery and the American Society of Addiction Medicine (ASAM), the project team will educate patients in patient-centered outcomes research and comparative effectiveness research (PCOR/CER) through webinars/conference sessions, train a national patient council and help them to identify outcomes important to patients for PCOR/CER and disseminate the results to inform future PCOR through meetings with policy makers.

The project’s objectives are to: 

• Build capacity of people with SUD to engage in PCOR/CER and to understand and apply the results 
• Foster national dialogue on outcomes important to patients with SUD that will help identify critical outcomes 
• Bring together a patient council, diverse in race, ethnicity, gender, age, socioeconomic status, geography, and type of SUD, to recommend the most important outcomes for PCOR/CER 
• Deepen collaboration between patients and ASAM to foster more relevant PCOR/CER; raise awareness in patient, clinical, and research communities about the importance of patient engagement in research 
• Disseminate findings and meet with researchers, insurers, health systems, and policy makers to urge changes in policies and practices 
• Long term, ensure PCOR/CER addresses outcomes most critical to patients so research results better inform patients’ choice of treatment and their treatment outcomes 

The project team expects to achieve these outcomes: 

• At least 200 patients in recovery from SUD have increased capacity to be meaningful partners in informing, designing, and participating in PCOR/CER and can apply the results to their own treatment decisions 
• A national patient council that can be transformed into a permanent Faces & Voices workgroup 
• A report on treatment and life outcomes most meaningful to patients that can drive PCOR/CER design 
• Lessons from the project’s outreach and education activities that can be used for building capacity of other patients with SUD to engage in PCOR/CER 
• Deeper collaborations between patients and ASAM members to advance PCOR/CER and increased awareness among researchers, clinicians, and patients about the importance of patient engagement in research 

The heart of this project is training and engagement of patients. The team plans to do this in phases: 

Phase 1: Broad outreach and education to patient networks 

Phase 2: Selection, training, and support of a patient council 

Phase 3: Solicitation of additional patient and family recommendations through roundtables and surveys 

Phase 4: Distribution of patient council report, and advocacy for implementation of recommendations 

Phase 5: Establishment of permanency for the patient council