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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