Background: People living with extreme poverty and substance use disproportionately experience health issues such as substance use disorder, overdose, infections, malnutrition, stress, exposure to extreme environmental conditions, and reduced access to healthcare services. To develop effective policies and practices to prevent, mitigate, and manage health effects of substance use and poverty, high-quality evidence is needed. Research designed to generate such evidence is generally rigid and has inclusion criteria or participant requirements that, in effect, exclude many members of the vulnerable populations of interest. As a result, the available evidence has limited relevance and generalizability. 

Proposed Solution to the Problem: A potential solution is for harm reduction (HR) agencies to use their trusted position with disenfranchised clients and interested researchers to facilitate partnerships for patient-centered outcomes research (PCOR) approaches. Prevention Point Philadelphia (PPP) is a trusted HR agency and healthcare provider to 35,000 clients in the Kensington neighborhood of Philadelphia, Pennsylvania, a national epicenter for substance use and poverty. PPP’s active client advisory groups model engagement in program planning and implementation. PPP is recognized as a valuable resource to dozens of research centers and an increasing number of researchers want to partner with PPP. PPP’s leadership has invested in research staff to improve the relevance, safety, and generalizability of research.

Objectives: The project team’s long-term goal is to address health inequities among communities living with extreme poverty and substance use by building capacity for PCOR partnerships and comparative clinical effectiveness research (CER) within these communities and researchers via HR agencies. Project objectives are to: 

1. Develop a collaborative of informed HR patient stakeholders to engage in PCOR and CER
2. Educate researchers about PCOR and HR principles and issues faced by persons affected by drug use and poverty
3. Facilitate interactions to promote ongoing patient and researcher stakeholder discussion about research ideas, design concerns, and collaboration

Activities: Five patient stakeholder education sessions will be held to introduce the concepts of PCOR/CER and harm reduction. Participants will learn about basic research methods and research ethics. Three researcher education sessions will be held to introduce the principles of PCOR, CER, and harm reduction. Barriers and facilitators to PCOR and other research within HR organizations will be discussed. In three combined interactive sessions with all stakeholders, lessons learned and experiences with research in HR settings will be discussed. Participants will collaborate to develop patient and researcher guides to inform patients about research participation decisions and improve consideration of patient concerns in development of research projects.

Projected Outcomes and Outputs:

Short-term outcomes during the project period include 1) A “pool” of trained, interested patient and researcher stakeholders ready for full participation in PCOR/CER projects for a variety of health issues and 2) production of guides for patients considering participation in research and for researchers developing projects. 

Medium-term outcomes (0-2 years post-project period) include the initiation of PCOR/CER projects with substantive, meaningful engagement of persons living with extreme poverty and substance use.

Long-term outcomes (3+ years post-project period) include recognition that HR organizations can facilitate and be active participants in PCOR/CER.

Patient and Stakeholder Engagement Plan: PPP clients and stakeholders conducting research at PPP were engaged in the project design. Recruitment is open to all clients and Philadelphia area researchers interested in PCOR and CER in issues relevant to PPP’s clients. Patient and researcher stakeholders will work to identify barriers and facilitators to research participation and develop recommendations to improve engagement.  

Project Collaborators: 
The project team consists of PPP staff and patient advocates with lived experience with substance use and poverty and a researcher with  PCOR experience who directs the Office of Community Engaged Research and Practice for the College of Public Health at Temple University.