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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

If this is your first time utilizing this toolkit, we highly recommend that you use the “Get Started” button below and progress through the toolkit chronologically. With an overall understanding of the toolkit, you may then find it helpful to revisit some sections that are most applicable to your work.

If you find you have questions at any point along the way, please use the contact form at the bottom of every page to send toolkit-specific questions to the El Futuro Staff.

The Standards of Engagement to the left are the foundation for successful research. We’ve put this side bar on every page of the toolkit to emphasis this foundation. You can expand each Standard for full definitions.

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