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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 3: Seeking Funding & Forming the Application

This section delineates key application processes and items necessary for a successful application for research funding. These steps build on the shared mission agreed to by stakeholders during the developing research ideas and project planning and design phases.

Recommendations

1. Find a match between the project idea and funding opportunities.

  • Review the Landing Pad for Research Ideas and Collaborators created by the CBHOSL in Step 1: Developing Research Ideas.
  • Develop a periodic “Eyes and Ears” communication to share emergent ideas and organizational priorities with key partners and friends, asking them to be on the lookout for relevant funding opportunities and to let you know.

2. Gain a clear understanding of funder priorities, grant guidelines and funding cycles.

  • Funder priorities include target populations and research questions.
  • Grant guidelines (e.g. RFPs) describe the maximum award dollars, what is allowed and not allowed in the project, and time period for the project.

3. Partners should communicate with each other about their own internal organizational timeline requirements.

  • Funding cycles and application deadlines impact all stakeholders but often groups don’t understand the demands each are under with regards to internal organizational timelines.
  • Deadlines from the funder necessitate many internal deadlines to the CBHOSL and research partner. A proposal package consists of a number of documents, some of which may be required for internal approval within the CBHOSL or research organization more than a month prior to the final external deadline by the funder.
  • It is important to have an understanding of the different parties involved in preparation of the application: team partners, business office, center director, signatory official, executive director, etc., and the timeline pressures that each face.

4. Talk through and acknowledge ways each partner will contribute.

 

  • Partnership options based on level of involvement:
    • Subcontracts are a mechanism that leaves significant responsibility and flexibility with the given partner.
    • Consultants (individuals or organizations) contribute a defined expertise and/or resource; this mechanism is less burdensome to manage and less flexible.
    • Letters of support do not assume responsibility for tasks and are not included in the budget.
  • Make sure each partner has a clear understanding of expectations. It is important to discuss: worst-case scenarios; an exit strategy for each partner if needed; ownership of findings; criteria for authorship; and publication plans.

5. Develop a realistic budget that includes all costs in order to not undervalue stakeholder participation.

  • The budget must balance cost-efficiency and flexibility to convey to the funder that you will be able to carry out promised tasks at a reasonable cost to them
    • Make sure all partners have a clear understanding of what is allowed and what is not allowed: what items are/are not allowed in the budget, where there is/is not flexibility over time.
    • Create the necessary systems at your organization to determine the true costs of the project and consider all of these using a Budget Template.
    • The ideal budget conveys opportunity and resources to all partners.
    • Remember to consider the Facilities & Resources you bring, and must use, as the CBHOSL. Don’t forget to describe these for each partner in the Project Summary, and then include them in the budget.
  • Including CBHOSL personnel in the budget: Consider the skills needed to lead and implement the project successfully, time availability vis-à-vis project time commitment, account for anticipated salary raises.
    • o Prepare NIH-Formatted Biosketches for all key personnel, the project thought leaders who cannot be replaced by substitute staff.
  • Including other costs in the budget: These include for example, supplies, license fees, participant incentives, refreshments, travel, and technology fees. o Study participants should be compensated fairly and equitably while still achieving the over-arching goal of cost-efficiency
  • Use the Indirect Cost Rate or include administrative overhead costs directly: Consider the pros and cons of establishing a CBHSOL indirect cost rate.
  • Note that some funders allow budget adjustments to be made post award, and all have different processes for submitting these adjustments. Consult with your funder to learn more.

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