Table 1

Common questions about patient involvement and suggested strategies

QuestionSuggested strategies
How do I identify patients to partner with?
  • Create description of patient partner role, outlining the specific roles and responsibilities, time commitment and skill set

  • Contact local university, hospital or research foundation about formal channels to identify patient partners (eg, Hospital Patient Family Advisory Council)

  • Contact relevant charity or national patient foundation, if relevant (eg, Asthma Canada)

  • Publicise description of patient partner role on social media

  • Contact a patient advocate and ask them to share within their networks

Do patients need training to be involved in research?
  • Most patient partners do not require specific training, but should be supported

  • Based on the role of the patient partner, additional training may be beneficial

  • Refer to local resources for patient training courses (eg, Patient and Community Engagement Research Unit19)

How do I engage with vulnerable populations?
  • Identify researchers and colleagues who have conducted similar studies, contact them and ask them how they identified partners

  • Work with known patient partners

  • Obtain additional training on working with vulnerable populations (eg, Patient-Oriented Research Curriculum in Child Health20)

How do I involve patients in grant writing?
  • Contact local agencies involved in patient-oriented research for support and guidance (eg, NIHR INVOLVE, Ontario SPOR Support Unit)

  • Include patient compensation budget in proposed grant

  • Ensure open communication with patient partners regarding their role, along with grant timelines and budget, prior to agreement to assist

Do I have to pay patients involved in research?
  • Patients should be compensated for their contribution, which can include monetary compensation, honorarium, in-kind gifts or vouchers

  • Patients may decline payment, but it should still be offered

  • Patients should be reimbursed for any expenses incurred (eg, transportation, parking)

  • Refer to funding organisation guidelines for appropriate details on payment (eg, CIHR SPOR, NIHR INVOLVE)