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
Use of the Toolkit
Use
The Toolkit that follows – developed through a PCORI-funded initiative, is designed to be both actionable and accessible. The Standards of Engagement should guide every facet of the PCOR project and anchor all of the toolkit components. You will find them linked within every other component of the Toolkit for easy reference. Although the Toolkit is designed to walk a CBHOSL through every phase of a PCOR project, from generating research ideas through dissemination, users can easily skip to samples and templates needed at any stage of the project.
In addition to recommendations for successful participation in each stage of the research project, each Toolkit component provides samples, templates, and guidance, as well as case studies to highlight important considerations.
A Note About Working With Researchers
Through feedback from CBHOSLs and Latino patient researchers, as well as the academic researchers, we learned that too often researchers are perceived as “exploitative” or “not to be trusted.” This results from a history in which Standards of Engagement did not exist, and research was approached without the focus on relationship development and equitable engagement that this Toolkit promotes. However, it is important to remember that researchers frequently also have roles as community members or participants/leaders in CBHOSLs. They are often drawn to research on Latino behavioral health as a result of personal experiences and values that are closely aligned with those of the partnering Latino community and CBHOSLs.
Therefore, the Toolkit includes a particular focus on developing quality relationships between researchers, patients and CBHOSLs. Establishing trust is essential to a good partnership. This happens throughout the project. For instance, to address community perceptions, researchers can provide biographical information that includes not only their CV, but also the values that brought them to the research in the first place. Through intentional effort for shared understanding, collaborative PCOR research projects can be significantly more successful, and researchers, patients, and CBHOSLs can work together to improve health outcomes.
What is PCOR?
To us, PCOR is “research that matters to people!”
- Empower patients to voice their opinions
- Conduct better quality research with Latino patients/families
- Improve accountability and efficiency of research collaborations
- Enhance applicability of the research
- Increase translation, dissemination and uptake of findings
- Support social justice
Spanish Translations
Watch for this icon throughout the Toolkit to note items that have been translated into Spanish!