Learning Center
Your Guide to PCORI’s Collaborative Research Approach.
Access crucial information on PCORI’s mission, meeting guidelines, and project structures specific to the PARTNER roadmap. Equip yourself with insights into our cooperative methodology, fostering a deeper understanding of how we drive patient-centered outcomes through meaningful partnerships.
Has your child ever participated in research before?
If your child did participate in a research study, did you ever find out study results? How?
What Is PCORI?
PCORI, the Patient-Centered Outcomes Research Institute, is a non-profit organization committed to empowering patients and healthcare stakeholders through comparative clinical effectiveness research (CER). Since 2010, PCORI has funded over 2,000 projects addressing diverse healthcare challenges, emphasizing patient engagement throughout the research process. The organization’s strategic plan focuses on holistic approaches, including funding CER, engagement, dissemination, implementation, and research infrastructure, to generate patient-centered evidence and address evolving health challenges in the nation.
Guidelines
Review the guidelines for talking with all patient partners, including talking with children and teenagers.
Guidelines for talking with all patient partners
- Notify in advance; schedule a convenient time.
- Include trusted transplant team members.
- Recognize caregivers and patients as experts.
- Acknowledge patient partners as key decision-makers.
- Allocate dedicated discussion time.
- Sit down; explain using PARTNER’s questions.
- Speak age-appropriate language.
- Include pauses for questions and concerns.
- Directly ask for thoughts; address anxiety.
- Actively listen; be transparent.
- Sit down; explain using PARTNER’s questions.
- Respect schedules.
- Provide clear post-discussion contact information.
Guidelines for talking with children and teenagers
- Create a comfortable environment for individuals and families.
- Include trusted transplant team members.
- Acknowledge the child as an individual.
- Speak directly to them.
- Remind them they are experts on their experiences.
- Recognize caregivers as allies and interpreters.
- Avoid assuming young patients’ opinions align with their parents.
- Tailor interactions to age and developmental stage.
- Integrate play for younger children.
- Provide communication options for older children and teenagers.
- Acknowledge young people as key decision-makers.
- Explain the project using age-appropriate language.
- Include pauses for questions and concerns.
- Directly ask for their thoughts.
- Address anxiety and offer follow-up support.
- Listen actively; use open-ended questions.
- Provide examples for comfortable communication.
- Clearly present available options for their choices.
PARTNER process for designing PCOR Roadmap
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What is PCORI?
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