Patients as Partners in Research Surveys
Objective
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. Surveys of researchers have the same goal: to understand their experience when associating with patients/caregivers.
Reference
Maybee, Alies et Brian Clark for Patients Canada, “Evaluating the patient partnership in research”, 2016
Online : https://ossu.ca/for-patients/resources/
Patient/Caregiver’s survey : https://ossu.ca/wp-content/uploads/EvaluationSurveysPatient_2016.pdf
Researcher’s survey : https://ossu.ca/wp-content/uploads/EvaluationSurveysResearcher_2016.pdf
Assessment
Assessment Grid
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?