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

• Other: _____________________________________

Who do you want to engage with?

• Current patients

• Former patients

• Caregivers

• Family

• Public

• Patient support groups

• Patient organizations

• Community 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?

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

Design:

• 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.

• Become co-applicants

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

Data Collection:

• 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

Dissemination:

• 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

Implementation:

• 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

• Focus Group

• Town Hall Meeting

• Interviews/Hearing Patient Stories

• Surveys

• Social media

• Patient Shadowing

* For information on existing advisory councils please contact the SCPOR Patient Engagement Platform.

What level of engagement do 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.