Patients as Partners in Research Surveys
- Scientific Rigour
- Patient and Public Perspective
The patient/caregiver and researcher partner surveys are designed to understand the actual experience of researchers when they partner with patients and caregivers on a project where the patients and/or caregivers are members of the research team. The questions are practical and look to identify behaviours that support productive partnerships.
Maybee, Alies et Brian Clark for Patients Canada, “Evaluating the patient partnership in research”, 2016
Retrieved online at: https://ossu.ca/for-patients/resources/
We provide a five-point rating for each of the following four criteria:
- Scientific Rigour: Was the development of the evaluation tool scientifically rigorous and based on existing evidence on patient and public engagement?
- Patient and Public Perspective: Does the evaluation tool take into account the views of patients and the public (both in its development and use)?
- Comprehensiveness: Is the tool comprehensive in evaluating the context, process, outcomes and impacts of patient and public engagement?
- Usability: Is the evaluation tool easy to use?
Each criterion has 5 question-items. We gave 1 point per item if the answer to the question was YES, 0 points if the answer was NO or CANNOT ANSWER.
- Is the evaluation tool based on a comprehensive literature review on patient and public engagement research?
- Is the evaluation tool based on the experience/expertise of key stakeholders?
- Is the evaluation tool based on a conceptual/theoretical framework of patient and public engagement?
- Was the evaluation tool tested for validity (i.e., the tool evaluates what it is purported to evaluate)?
- Was the evaluation tool tested for reliability (i.e., the tool produces stable and consistent results)?
- Were patients and/or the public involved in the development of the evaluation tool?
- Is the tool designed to be completed by patients and/or members of the public (self-administered)?
- Does the tool explicitly state that the evaluation results must be reported back to patients and the public?
- Was the tool specifically designed to evaluate patient and public engagement activities?
- Does the tool capture the influence of patients and the public? (e.g., on the engagement process, on the final decisions, etc.)
- Does the tool document the context of engagement?
- Does the tool document the process of engagement?
- Does the tool document the outcome/impact of engagement?
- Does the tool monitor the engagement process at multiple moments?
- Does the tool consist of a set of open and closed questions?
- Is the purpose of the evaluation tool stated?
- Is the evaluation tool freely available?
- Is the evaluation tool available in an applicable format?
- Is the evaluation tool easy to read and understand?
- Is the tool accompanied by instructions for use?
An initiative of the Université de Montréal
Direction collaboration partenariat patient
Faculté de médecine de l'Université de Montréal
Canada Research Chair in Patient and Public Partnership
CHUM Research Centre
Institut de recherche en santé publique de l'Université de Montréal
Canadian Foundation for Innovation