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
Standards of Engagement
Introduction
Standards of Engagement support successful research partnerships. To identify them we started by reviewing the PCOR literature for the values, processes, and capacities that are important when determining whether to engage in research. Our multi-stakeholder workgroup of community organizations serving Latinos, researchers, and Latino behavioral health patients and caregivers developed these standards further through a series of meetings, discussions and prioritization of initial formulations (with the standards determined to be highest priority across the stakeholder groups indicated in bold green in the table below).
We identified four Engagement Standards:
- To be focused on PCOR and patient engagement
- To be grounded in cultural competence
- To include a plan for sustainability of efforts, and
- To create appropriate research goals and show how knowledge is improved.
These are the foundation for building successful projects and for this reason we represent them in the below schematic as bricks in the foundation of the toolkit.
We were able to describe each of the Standards through three lenses or perspectives. This helped us to make each Engagement Standard more concrete, practical and relevant.
- Organizational Commitments: values and priorities of the organization are consistent with the research being proposed
- Organizational Characteristics: what needs to be in place in the organization to successfully participate in PCOR
- Research Characteristics: what needs to be in place in the research design/proposal for an organization to commit to research
The Standards of Engagement
(also available to the left in the toolbar at all times)
Research projects must:
1. 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”
2. 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
- PCOR Toolkit for Community Behavioral Health Organizations Serving Latinos 11
3. 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
4. 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