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
STEP 6: Understanding Outcomes
This component helps translate research findings into applied solutions by including patient partners, researchers, and community organizations in data analysis. These recommendations help ensure stakeholders are adequately engaged in defining, interpreting, and sharing research findings.
Recommendations
1. The researcher can offer training to patients and CBHOSL stakeholders to help them become engaged and empowered to participate in analysis.
- It is important to create an environment that welcomes questions and slows down the process in order to promote understanding and invite feedback.
- Keep in mind that data analysis will be unfamiliar to patients. Ensure all participants are familiar with the language and process at the level needed for full participation.
- Note that in most cases it likely makes the most sense for researchers to share a preliminary analysis with the CBHOSL and patients – not the raw data or the statistical analysis methods. Patients and CBHOSLs should feel comfortable asking for revisions and clarifications of the analysis if it is not understandable.
2. Ensure research findings respect patients and make room for their perspective to be voiced.
- Ask patients to present information.
- Observe patient reactions to the information and what they choose to share with the community.
- Consider cultural nuances that may lend to a different interpretation of findings based on patient participation in research analysis.
- Package the information in an accessible format.
4. Establish an agreement up front whereby the CBHOSL can use the findings moving forward (grant applications, publicity, marketing, etc.)
5. Consider the ways the data might be useful to the CBHOSL in meeting longer-term patient outcomes or research goals.
- Researchers can often be called upon to provide additional data analysis to determine trends in the data that may be helpful for the CBHOSL but not necessarily a part of the funded project.