Patient Centered Outcomes Research

Toolkit to Promote Patient and Family Engagement during Critical Illness in Patient Centered Outcomes Research

Section Contents

Methods

  • We implemented the mixed-methods approach Group Concept Mapping (GCM) with recently discharged ICU patients, their family members/caregivers, & ICU clinicians and researchers
  • Stakeholders identified barriers to research participation in 7 domains
  • Stakeholders rated the barriers for feasibility to addressing the barrier, and the impact of doing so

Engagement Strategies - Negative ICU Experience

Identified Barrier

Strategy to Overcome

Perceive that ICU staff don't think research is valuable or important

Foster research culture

No support from other clinicians for patient research participation

Foster research culture

Failure to build trust during ICU stay/Poor relationship with treating physician

Build trust between care providers, patient/family, and researchers

Strategies

  • Strategies for Engaging Patients/Family Members during the ICU Stay
    • Involve a trusted ICU provider
    • Utilize trained research staff for recruitment
    • Ensure that patients/families have sufficient information to make informed decisions about research participation
    • Clarify that participation in research will not impact ICU care
    • Consider use of a patient and family advisory group
  • Strategies for Engaging Patients/Family Members after ICU Hospitalization
    • Enlist interest in potential studies prior to discharge if possible
    • Obtain accurate follow up contact information  
    • Consider patient and family member’s ability to participate in research post discharge
    • Use public facing platforms, such as social media, posters, information leaflets, animations, videos to publicize research opportunities
  • Addressing Patient/Family Perceptions About Research

    Considerations for ICU clinicians

    • Keep up-to-date with research opportunities that exist for patients/family members
    • Embed research in routine clinical practice
    • Address patient/family misperceptions or fears related to research participation

    Considerations for ICU Researchers

    • Ensure recruitment materials and consent forms are appropriate for patient/family members with varied educational levels
    • Utilize experienced persons for recruitment
    • Actively involve patients/family members in the design of  study and information materials, if possible
    • Explore clinician reluctance to enroll patients/family members for research studies
    • Provide incentives/compensation based on research involvement
  • Addressing ICU Setting Limitations

    Promote a research culture in the ICU

    • Address barriers to informed consent

    Patient/Family Logistics

    • Ensure patient/family privacy and time for decision making
    • Written study information should be easy to understand and include information relevant to patients/families
    • Use patient/family member facing information such as posters, information leaflets, animations and videos to publicize research opportunities

    Experiences related to ICU stay

    • Consider best timing to approach patient/family for research participation
    • Evaluate implications of research participation within content of treatment plan
  • Strategies for Addressing Research Logistics
    • Provide clinical staff with access to research training and information about
    • ICU research and consent processes. 
    • Assess capacity of patient/family to participate – have clear eligibility criteria 
    • Avoid a ncheck-circle recruitment window
    • Consider timing of recruitment in context of patient/family readiness to participate
    • Evaluate use of electronic patient recruitment tools
    • Consider use of decision aids
  • Addressing Research Fears
    • Build trust between patients/family members, ICU clinicians, and research team
    • Use a structured approach when discussing research with patients/family members
    • Reduce decision-maker burden on family members with staged consent with information provided initially and  recruitment completed at later time 
    • Offer patients/family members the opportunity to access summaries of study findings
    • Provide information on where patients/family members can access further information about the study
    • If patient/family decline study participation, explore additional information needs or potential misunderstandings

Acknowledgement: Work reported in this toolkit was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (EACB-26623). The statements in this toolkit are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.