Patient-Oriented Research Project Planning Tool
Start by reviewing the Strategy for Patient Oriented Research, Patient Engagement Framework. This template is used to guide the discussion about how patients may be engaged in your research project. Complete this template as early in the project identification phase as possible. Include patients in the creation of this plan if possible. This template may be used throughout the life of project to amend or identify new or additional patient engagement opportunities.
The first portions of the tool are included on this page for reflection, followed by a link to download the entire document.
Why do you want to engage patients?
Gathering ideas for new research areas based on patients needs
Ensuring research is focused on the publics interest and concerns and that money and resources are used effectively
Ensuring transparency and accountability
Ensuring that the methods are acceptable and sensitive to the situations of potential research participants
Making the language and content of information more appropriate and accessible
Increasing participation in research
Collective data by, with and for patients
Taking diverse perspectives into account when analyzing data
Taking diverse perspectives into account when making decisions
Increasing the dissemination and uptake of research findings in practice or policy
Meeting the requirements of funders
Who do you want to engage with?
Patient support groups
People who have experience with a specific condition, service, treatment.
Any specific demographics of patients/former patients/ caregivers/ family/experienced persons that are important for this work?
What might patient team members do?
Identifying & Prioritizing:
Through community representation and organizations help inform research priorities
Be consulted about research topics and priorities important to them
Collaborate and co-develop with researchers and other key groups topics for research
Inform the design of the research study
Clarify the research question and affirm its importance
Ensure the methods selected are appropriate for patients
Co-develop patient recruitment strategy
Review and comment on proposed questionnaires and data collection methods
Development of the Grant Proposal:
Help to ensure that the research proposed and chosen methods are ethical
Inform areas where patients and the public could be involved
Define outcome measures
Advise on the appropriateness of the lay summary
Raise awareness about costs of involvement, expenses and prompt researchers to cost for involvement.
Preparation for execution of the study:
Assist with writing patient information and consent forms
Review ethics and operational approval applications prior to submission
Aid in designing the detailed protocol
Produce research updates that are patient friendly
Draft/revise study materials and protocols
Assist with the recruitment of study participants
Assist with conducting interviews and surveys
Analyzing and Interpreting Data:
Assist the research team in developing themes from data
Be consulted to determine if they understand and interpret data the same way as the research team
Develop more approachable methods to help interpret the data
Advise on different avenues for disseminating the results
Author/co-author manuscripts, newsletters and other appropriate information outlets
Jointly present the findings with researchers
Write information for local patient groups/hospitals, etc.
Assist in getting results/findings published on charities/ voluntary organization websites
Help distribute results within their informal network
Produce summaries of findings
Increase the likelihood that results of research are implemented, by adding validity to the findings
Develop patient information for new services/interventions within hospitals, clinics, etc.
Monitoring and Evaluation:
Have continued involvement with the study to maintain focus and address issues as they arise
Collaborate with researchers to evaluate the research process
Reflect on their role and what they have learned
What engagement methods will you use?
There are many ways to engage patients/ groups in research. Consider which of the following you may use. Note that you may use several methods at various stages of the project.
Patient on research team (SCPOR recommends 2 patients per research team.)
Patient Advisory Council
Work with existing provincial or regional patient advisory councils*
Work with existing patient groups
Town Hall Meeting
Interviews/Hearing Patient Stories
* For information on existing advisory councils please contact the SCPOR Patient Engagement Platform.
What level of engagement due you expect?
Level 1 : INFORM To provide the patient with balanced and objective information to assist them in understanding the problem, alternatives, opportunities and/or solutions.
Level 2: CONSULT To obtain patient feedback on analysis, alternatives and/or decisions.
Level 3: INVOLVE To work directly with the patient throughout the process to ensure that patient concerns and aspirations are consistently understood and considered.
Level 4: COLLABORATE To partner with the patient in each aspect of the decision-including the development of alternatives and the identification of the preferred solutions.
Level 5: EMPOWER To place final decision-making in the hands of the patient.
* Achieving a higher level of engagement is optimal. Note that the levels of engagement may vary for each patient or patient group therefore you may have more than one level of engagement within your project. Ie. You may have groups of patients you want to INFORM while the patient on your research team may be engaged at the EMPOWER level.