Toolkit Menu
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
PROJECT SUMMARY
A Template of Information to Consider
TOOLKIT CONTEXT:
Step 1: Developing Research Ideas
Step 2: Project Planning and Design
Step 3: Seeking Funding & Forming the Application
Step 5: Project Implementation
Whether it’s a research idea that came up within the Community Behavioral Health Organization Serving Latinos (CBHOSL) or one that was proposed by a partnering researcher, it’s important for CBHOSLs to consider the full array of project implications before deciding to move forward. Requiring a Project Summary can help to make an informed decision.
The Project Summary should include at least the following information:
- Study Background and Purpose
- How it connects with community needs
- How will participation benefit my organization?
- Lasting relationships, knowledge, or capacity improvements to result
- Funding
- Other
- Project Timeline
- Funding proposal timeline (including that of any partnering researchers and their university staff counterparts)
- Project timeline
- Profiles of Other Research Partners
- The research entity – including a description of its Facilities & Resources
- The researchers – including experience in the community
- Proposed Roles for Partners
- Data Ownership – who owns the data? Outcomes?
- Proposed Methodology
- Proposed Budget
After project approval and funding is awarded….
- Final budget approved
- Revised Project Workplan, including revisions to Project Timeline and Personnel Roles & Responsibilities as appropriate
- A culturally competent plan for recruiting patients to guide efforts to engage patients in the project
- Updates to the methodology / data collection procedures
- Any other changes from the original Project Summary