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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
STEP 1: Developing Research Ideas
This section guides the development of a framework for making the decision about whether to participate when a project is proposed to a CBHOSL by an external partner. Although many times a project is initiated by an external researcher or research entity, CBHOSLs interested in research can also be proactive in identifying and initiating research projects that further their missions, values, goals, and priorities.
Recommendations
1. Develop a Research Opportunity Review Framework for guiding decision making about whether to participate in research ideas.
This framework should become the go-to reference for consideration of any research opportunity. The Framework ideally works best when used to evaluate a research proposal framed as a Project Summary.
The Research Opportunity Review Framework should at least include the following:
- Research Leadership Team. Developing this committee will provide a mechanism and structure for responding to internal and external research opportunities as they arise, guiding a process that considers fit, capacity, equitable community engagement, and the PCOR Standards of Engagement at every step.
- Your organization’s Guiding Research Priorities. All research opportunities should fit within these and help to move them forward. Include an understanding of the mission, values, current strategic goals, and research priorities. Definition of the information needed from a Project Summary in order to have enough relevant information to guide decision making about whether to participate.
- PCOR Standards of Engagement as a checklist for whether the opportunity meets Patient Centered Outcomes Research (PCOR) standards.
- Policy on Patient Involvement in Research & Principles of Community Engagement to ensure equitable, culturally aware, and socially just practices. This Policy should adhere to equitable Community Engagement Principle and Priorities focused specifically on working with Latino
communities.
Important considerations to remember!
- The relationship with the researcher – understanding of their values, and whether it already is or has the potential to become a longer-term relationship – not just a one-off project.
- The internal capacity available or that would need to be developed to successfully participate in the project, and whether the project will support the organization’s underlying infrastructure (not just new, added research activities).
2. Develop a Landing Pad for Research Ideas and Collaborators.
This is an important document for both developing research projects internally as well as responding to external opportunities. It will support a number of strategies for developing and partnering on successful PCOR projects, including:
- Identifying specific research topics of interest that can be referenced when funding opportunities arise;
- Identifying community members who are interested in research projects and outcomes, or who can be key community connectors when it is time to recruit community members for involvement in research;
- Identifying researchers and other partners with similar interests or serving similar communities, with whom relationships can continually develop, so that when an opportunity arises, a bedrock of trust and relationship is there already.
HINT:
Make time within your responsibilities to develop longer-term relationships with researchers.
- Idea 1 – Consider inviting key research partners or potential partners to staff meetings periodically so that they can learn the organizational culture and issues faced.
- Idea 2 – Make lunch, coffee, or happy hour dates to meet informally and learn more about each other.
3. Maintain a list of potential opportunities and funding entities.
Examples of ways to build this awareness include:
- Notice and document sponsors of the projects whose findings you read in articles of interest to your work.
- Reach out to the researchers and organizational partners with whom you have developed relationships. Inquire whether they have ideas of funders who might be interested in your idea.
- Attend conferences relevant to your research priorities, and notice the sponsors of the conferences or the research presented.
- Keep these documents active and alive, continually adding information as new individuals or ideas are identified.
- Assign this task to a staff member with routine updates and maintenance.
- Remember to update this document after conference attendance, partnership meetings, community gatherings, or key conversations in which interested parties or research ideas are identified.