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Standards of Engagement
Be Focused on PCOR & Patient Engagement
The organization must be committed to:
- Applicability (applying results) - meaningful consequences for patient quality of life and community health
- A focus on impact that we can measure
- Honoring commitments - “Doing what we say we will do”
- Ensuring clear expectations amongst stakeholders (including organizational leadership, personnel, and patients) and empowered, autonomous participation
What needs to be in place for the organization in general:
- Effective communication - internally and with patients/partners that is transparent and respectful
- Decision making process across organizational levels that is understood by all parties and represents a mutual effort
What needs to be in place when considering a particular research project:
- Adequate time and resources devoted to project (for both the organization and patients)
- Everyone (leadership and staff) understands the commitment to the funder and partners
- Discipline ourselves to ask the question “How does this strengthen patient empowerment, relationship with organizations, and treatment outcomes”
Be Grounded in Cultural Competence
The organization must be committed to:
- Adequate number and diverse Latino patient representation (not just token)
- Inclusion of Latino patients’ perspective and insights throughout the partnership (not just attendance)
What needs to be in place for the organization in general:
- Systematic stakeholder discussion - a system to bring together community, patients, providers and researchers at a given time to determine research questions, involvement, agenda, etc.
- Ongoing collaborative partnerships - in harmony with mission and goals of person or organization - not just a one-time project
- A common understanding of what PCOR is - through education & training - both for the organization and for patients, partner organizations & researchers
What needs to be in place when considering a particular research project:
- Meaningful representation of Latino patients and perspectives in the discussion
- Patient influence - understand how Latino patient participation influences research study design and results
Include a Plan for Sustainability of Efforts
The organization must be committed to:
- An ongoing relationship between all involved partners
- Developing infrastructure for facilitating ongoing research
What needs to be in place for the organization in general:
- Realistic consideration of costs - both direct and indirect
- Commitment to long term engagement with a trusted partner
- Protected time and space for research activities
What needs to be in place when considering a particular research project:
- Alignment with organization goals - clear understanding of how the project fits within larger organizational goals and works toward them in broader timeline
- Defined plan for transitioning from project to next phase of partnership toward ongoing goals
Show How Knowledge Is Improved
The organization must be committed to:
- Applicability (applying results) - meaningful consequences for patient quality of life and community health
- Accountability and transparency with research process
- Improved “translation” - sharing findings in a way that allows them to affect the world around us
What needs to be in place for the organization in general:
- A plan for giving ongoing research updates to everyone involved and applying feedback received
What needs to be in place when considering a particular research project:
- The development of the proposal and implementation of the project includes insights from patients and stakeholders
- There is a plan for dissemination and implementation
Executive Summary
Introduction
Latino children and adults with mental health needs in the United States are less likely to seek and receive services for a number of reasons. Unmet mental health needs are associated with poor outcomes over the lifespan, both economic and social. Research has shown that actively involving patients throughout the research process and at the community level brings special relevance to research because it attempts to address real issues found in the community, yet strategies for successfully engaging these stakeholders are lacking. Community Behavioral Health Organizations Serving Latinos (CBHOSLs) populations are in a unique position to engage Latino community research partners effectively. The goal of this project is to facilitate engagement in PCOR by (CBHOSL) populations.
Purpose
The Toolkit is designed to support more successful participation in PCOR by CBHOSLs. Successful implementation of the Toolkit will help realize important goals:
- Improved quality of care, health outcomes, and health care decision making for Latino behavioral health patients;
- Improved empowerment of Latino behavioral health patients, their family members, and the community;
- Improved health equity in this underserved population;
- Improved sustainability for CBHOSLs, PCOR projects, and their findings;
- More meaningful legacies for both CBHOSLs and researchers; and
- Improved population health.
Methods
To accomplish this goal, a multi-stakeholder workgroup consisting of CBHOSLs (led by El Futuro, a CBHOSL in Durham, NC), researchers (from the Cecil G. Sheps Center for Health Services Research at the University of North Carolina and from the University of Southern California), and Latino patient researchers (behavioral health patients and family members) came together to design a PCOR Toolkit for organizations to use to promote efficient and sustainable PCOR involvement. The Toolkit was developed over a two-year period through a project funded by the Patient-Centered Outcomes Research Institute (PCORI). Qualitative methods were used for data collection and analysis.
Intended Audience
This Toolkit is designed specifically to improve the capacity for and knowledge of PCOR for community behavioral health organizations serving Latinos (CBHOSLs*). There are two other important areas for improving capacity that were NOT the focus but at times are addressed in the toolkit: 1) improved participation in PCOR by Latino behavioral health patients and family members; 2) improved engagement of CBHOSLs and Latino behavioral health patients by academic researchers. However, there are many tools and useful recommendations that can inform and empower Latino behavioral health patients and researchers to better engage PCOR.
* WHAT’S A CBHOSL? Community Behavioral Health Organization Serving Latinos
Summary of Key Findings
Successful PCOR projects dedicate tangible resources (personnel and time) to long-term relationship development between researchers and the CBHOSL partner, avoiding scenarios in which CBHOSLs are left feeling exploited as a result of participation.
Successful PCOR projects have a champion within the CBHOSL to help drive the project forward, helping to maintain a focus on the project activities amidst competing organizational demands.
PCOR partnership success is increased greatly when there is a research-CBHOSL “sherpa” – someone with experience in both community organizations and research who can be a bridge between worlds.
It is critical to keep effective Community Engagement Principles at the forefront at every stage of the project.
What emerged from this PCORI-funded initiative is an actionable and accessible Toolkit for CBHOSLs who want to participate in PCOR, with concrete samples and tools to improve capacity for successful participation. As a result, our hope is that more CBHOSLs will be proactive in participating in research that can benefit the Latino behavioral health patients they serve.
Toxic Relationships
Toxic relationships can foil the best intentions. Throughout the guidance in this toolkit, this icon will appear to highlight recommendations especially aimed at preventing toxic relationships.