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
POLICY ON PATIENT INVOLVEMENT IN RESEARCH & PRINCIPLES OF COMMUNITY ENGAGEMENT
TOOLKIT CONTEXT:
Step 1: Developing Research Ideas
Step 2: Project Planning and Design
Step 5: Project Implementation
POLICY ON PATIENT INVOLVEMENT IN RESEARCH: The following must be understood:
- Who will collect the data – the researcher, organization staff, or someone else?
- Ethical considerations
- Types of questions that are off-limits
- How to address disclosures of clinical importance / impacts on treatment
- Patient confidentiality
- Whether it is ok to include patients active in treatment
- A way out of the project is defined and is clearly understood by the patient
- The patient understands that they are volunteering for participation and can exit the project at any time, with no impact on their past, current, or future treatment options
- There is a clearly defined patient grievance process which the patient understands
- Cultural considerations
- Language in which data will be collected
- Familiarity of recruitment personnel with the culture
- Recruitment personnel’s ability to gain trust with the recruitment population
- Recruiting personnel roles, responsibilities – with the organization or the researcher?
- Personnel will be adequately trained – by whom?
- Time commitment of organization personnel for recruitment
- Definition of “patient participant”
- Someone who has received services in the past
- Someone who is currently receiving services
- Someone who will receive services in the near future
- A caregiver to the patient
- Definition of any patient populations or sub-populations that are off-limits (based on treatment impact, diagnosis, involvement in court system, age, gender, etc.)
- Access considerations
- Compensation for patient involvement is fair, adequate, and proportionate to compensation for others involved in the project
- Childcare will be provided
- Transportation needs
- Protocol for situations in which a patient becomes distressed during data collection
- Protocol for how patients are identified and contacted
- Need for IRB or other approval / considerations – Understanding the Institutional Review Board
PRINCIPLES OF COMMUNITY ENGAGEMENT
Cultural Competence Applied
Below are considerations that Community Behavioral Health Organizations Serving the Latino Community (CBHOSL) and Researchers interested in Patient Centered Outcomes Research (PCOR) might consider when seeking to engage the Latino community in research.
Considerations
- Know your population
- Know the federal and state governmental policies in place
- Be aware of intrinsic and structural barriers to care
- Learn about the community’s perception of research
- Learn about what the community needs to participate in research
- Appropriate compensation for participation
- Strive for partnership not tokenism
Use this checklist as an exercise in cultural competency.
Suggestion: complete this checklist quarterly.
