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
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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)
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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)
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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
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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)
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