Canada's healthcare spending reached 12% of its gross domestic product in 2023 (1), driven largely by an aging population and the growing prevalence of chronic diseases. Both of which require costly, ongoing medical care (2, 3). In response to these escalating costs, Health Technology Assessments (HTAs), particularly economic evaluations, are increasingly important in informing policy decisions to maximize health outcomes with limited resources (4). These evaluations help decision-makers allocate limited healthcare resources to maximize health outcomes, especially as demand continues to outpace funding.  

Over the past two decades, there has been a growing emphasis on involving patients and the public in HTA processes. This shift aims to promote transparency, foster greater acceptance of HTA decisions and bring invaluable firsthand insights from patients living with specific health conditions and their caregivers (5).  Patient engagement (PE) can occur throughout the entire HTA life cycle, from topic selection to dissemination and evaluation. However, the role of patients in specific components, such as economic evaluations, remains underdeveloped. Most economic evaluations still position patients as data sources rather than active collaborators. While recent efforts have engaged patients in the economic modelling process (6), this involvement has highlighted both the potential benefits, such as enhanced validity and alignment with patient priorities, and the challenges, including increased model complexity and communication difficulties. Many health economists remain uncertain about how to engage patients effectively, and patients may feel tokenized or excluded from meaningful participation (7). These challenges underscore the need for clear, practical guidance on when, where, and how to involve patients meaningfully in economic evaluations. Balancing inclusive engagement with methodological rigour is essential to ensure that economic evaluations reflect what matters most to those directly affected by healthcare decisions. 

This project aims to co-create guidance on when and how to engage patients in economic evaluations, and on how to report and assess the impact of their engagement. Our specific objectives are to:  

1. Summarize existing patient engagement guidelines and best practices and evaluate their relevance to economic evaluations.  
2. Identify the researcher and patient partner barriers and supporting factors to patient engagement in economic evaluations.  
3. Develop guidance on how to engage patients in economic evaluations, and on how to report and assess the impact of their engagement. 

Our project aims to identify processes and develop guidance on integrating patient perspectives throughout the economic evaluation process, from start to finish. This approach addresses a key gap by ensuring evaluations reflect real-world patient experiences and priorities. By embedding patient input at every stage, we will promote transparency, inclusivity, and patient-centred decision-making in healthcare. Importantly, patient partners will contribute to current project activities and may also play a role in shaping the design and priorities of future health economic evaluations.  

The resulting guidance will set new standards for economic evaluations, emphasizing patient-centred outcomes and societal benefits. In turn, this will inform healthcare policy and resource allocation in ways that better align with patients’ needs and values. Ultimately, this work will advance the field of health economics and strengthen healthcare systems’ commitment to patient well-being and equity. 

The project will span 3 years (April 2025 – March 2028) and consist of 5 components:

1. Scoping Review – A review to explore existing reviews or guidance on patient engagement in health research. Findings will be summarized and used to identify key themes for consideration in the eDelphi survey.
2. Researcher survey – An international survey of health services researchers who have conducted or reviewed economic evaluations, aimed at characterizing the current landscape of patient engagement in economic evaluation practice.
3. Qualitative Interviews – Semi-structured interviews with key interest groups – health economists, patient partners, and knowledge users (e.g. health technology assessment agencies and health care providers) on the value of patient engagement to gain insights into experiences engaging patients or being engaged as a patient partner and barriers to patient engagement in economic evaluations.  
4. eDelphi Survey – A three-round modified eDelphi survey to reach consensus on the key items for patient engagement in economic evaluations.  
5. Consensus Meeting – A hybrid meeting to finalize the key items for guidance in patient engagement in economic evaluations.

In this project, we value the diverse ways that patients and caregivers can contribute to research. Throughout this document, we use the term “patient partners” to refer to individuals with lived or living experience of illness and their caregivers who contribute their expertise to the project. Guided by the Saskatchewan Centre for Patient-Oriented Research (SCPOR) Patient-Oriented Research Level of Engagement (SCPOR PORLET) (8), we aim to support a range of meaningful engagement opportunities across five levels: Inform, Consult, Involve, Collaborate, and Empower. Patient partners may choose their level of involvement based on their interests, experience, and availability, and are welcome to adjust their participation as the project evolves. For some components of the project, patient partners may choose to participate at the Inform (“be informed”) level, where they receive updates about project activities and findings. For other components, they may wish to participate more actively through consultation, collaboration, or partnership in research activities. For each component of the project, patient partners may choose to:

• Be Informed: Patient partners may choose to stay updated on project progress and receive regular communications. They may not be actively involved in research design or decision-making but are considered valued members of the broader team.
• Be Consulted: In this role, patient partners are invited to provide feedback on project components—such as research questions, priorities, outcomes, or tools (e.g., surveys or interview guides)—which will be considered by the research team.
• Be Involved: Patient partners can contribute ideas that shape project decisions. For example, they may help prioritize outcomes, inform protocol design, or interpret findings. Their perspectives are consistently integrated into decision-making processes.
• Collaborate: Patient partners may take on equal roles with researchers in developing the project. This could include co-creating tools, co-designing the knowledge translation plan, or jointly interpreting results. Their contributions directly influence project direction, methods, and outputs.
• Be Empowered: Patient partners may take on leadership roles (e.g., co-investigator, co-principal investigator), where they share decision-making authority throughout the project. This includes co-identifying priorities, co-determining outcomes, and co-leading knowledge translation and policy discussions.

We are committed to supporting flexible and meaningful engagement across this continuum. Patient partners are encouraged to voice their interests in participating in any specific aspect of the project. Time will be set aside during team meetings to check in on patient partner satisfaction and explore opportunities for involvement that align with each person’s interests, skills, and availability.

All patients, staff, and other members of the research team are invited to share ideas on how we can work together more effectively. Every suggestion is valued and helps us create a stronger, more inclusive research process.

To support these discussions, we have included the SCPOR PORLET Tool (Figure 1), which offers examples of how patients can be involved at different stages and levels of a research project (8). This framework can help patient partners to describe their preferred degree of involvement in various activities and guide research staff in reflecting on how well they facilitate meaningful engagement.  

In this project, the “Inform” level is not considered patient engagement according to the CIHR definition. While patient partners may choose the Inform (“be inform”) level for certain components of the project, meaningful engagement requires participation at higher levels (e.g., Consult, Involve, Collaborate, or Empower) in at least some aspects of the work.  

During meetings and in email communications, you may learn about the personal experiences of others or wish to share your own during discussions to inform research activities. Creating a safe and respectful space for open dialogue is a shared responsibility. To support this, all team members, including patient partners, are asked to treat personal stories, experiences, and any sensitive information shared during meetings or email communications as confidential.

Please do not share private information outside of the project team or with individuals for whom it was not intended. Similarly, the research staff are committed to protecting your privacy. Any personal details, testimonials, or recordings will be stored securely and will not be shared with others without your explicit consent.

For patient partners who wish to take on more active roles in specific components of the research, such as conducting or analyzing interviews, we encourage completing the TCPS 2: Core Tutorial (Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans) (9). This short, free online training introduces key ethical principles in Canadian research and helps ensure we all uphold high standards of privacy, respect, and integrity. The research staff are happy to assist with registration or provide support in completing the training, if needed.

If you have any questions about confidentiality or your role, please don’t hesitate to contact the staff at any time. 

Updates

The research staff will commit to providing regular updates to the team throughout the project, even during periods of low activity. Updates will be scheduled bi-monthly (every 2 months), although they may be delayed at times due to staffing levels and other responsibilities, or substituted with a team meeting.  

Meetings

Depending on project stages and deadlines, the staff will aim to schedule patient partner meetings approximately every 4 months to discuss project progress and engagement methods. The meeting durations can vary but will likely take 60-90 minutes and will be scheduled on a date that works best for most members. Meetings will be held via MS Teams or Zoom, allowing users to join from a tablet, computer, or phone. We hope to organize an in-person meeting at some point in the project, provided adequate funding and interest.

In preparation for team meetings, the research staff will send the slides and/or agenda beforehand if possible. The team is encouraged to bring up items they wish to discuss at any time before, during, or after the meeting. The meetings will be video recorded, and the staff and/or transcription tools, including AI-enabled features available through Zoom or MS Teams, may be used to take minutes.  If any member is unable to attend the meeting, they may review these materials to stay informed and send their opinions or responses via email afterward.

Methods

Communication among patient partners and the research staff will primarily occur via email, over the telephone as needed, and via video conference (i.e., Zoom or MS Teams) for meetings. The staff will be happy to explore other methods of communication if the standard methods are insufficient. The team now has a shared email (hero@ohri.ca) that is monitored daily by Cacy and Olivia to ensure a rapid response to any concerns, however, patient partners are also welcome to reach out to the Nominated Principal Investigator (NPI, Dr. Kednapa Thavorn at kthavorn@ohri.ca), particularly if you need to discuss any sensitive information. Partners will have access to a shared folder (e.g., OneDrive) containing important project documents (e.g., Terms of Reference, meeting materials, training materials, and references). This folder can be accessed from a computer or tablet.  

Training

Patient partners will receive online training and resources to build a foundational understanding of health economic evaluations and other relevant aspects of the project. These materials are designed to support meaningful participation and ensure everyone feels informed and confident in their role.

If specific tools or platforms are needed for project activities, such as DistillerSR (for literature screening), hands-on training and support will be provided before use. Additionally, we are happy to provide guidance and technical assistance with common tools such as Zoom, OneDrive, and other Microsoft 365 applications, as needed.

We are committed to ensuring that all team members feel supported in participating fully. If you have questions or would like additional training or assistance at any point, please don’t hesitate to let us know.

Contact

You are always welcome to reach out to the research staff at any point should you wish for further information or have concerns about the project and the status of our objectives. You can reach out to the research team’s shared email at hero@ohri.ca, the NPI Kednapa Thavorn at kthavorn@ohri.ca, or the patient partner co-principal investigator, Maureen Smith, at maureensmith137@icloud.com. 

We value the time, expertise, and lived experience that patient partners bring to this project. In recognition of their contributions, patient partners will be compensated in alignment with Canada’s Strategy for Patient-Oriented Research (SPOR) guidelines (10) (see Appendix 3 for the adapted payment guidelines).

• Patient co-principal investigator (co-PI) will receive $4,500 per year
• Patient co-investigators (co-Is) will receive $1,500 per year

This base compensation reflects ongoing contributions such as participation in team meetings, training sessions, and providing feedback on project components, including protocols, manuscripts, and presentations. 

We also recognize that some partners may wish to take on additional roles or activities, such as co-developing tools or participating in data collection or analysis. These activities will be compensated at a rate of $40 per hour, up to a maximum of 37.5 hours per year per partner (across all study activities combined), unless otherwise discussed with the NPI. To ensure timely and accurate processing, the research team will estimate and document additional activities and hours patient partners may have spent on this project. These records will be shared for validation with the patient partner co-PI and individual patient partners at the end of each project component or fiscal year.  

We also recognize that some partners may wish to take on additional roles or activities, such as co-developing tools or participating in data collection or analysis. These activities will be compensated at a rate of $40 per hour, up to a maximum of 37.5 hours per year per partner (across all study activities combined), unless otherwise discussed with the NPI. To ensure timely and accurate processing, the research team will estimate and document additional activities and hours patient partners may have spent on this project. These records will be shared for validation with the patient partner co-PI and individual patient partners at the end of each project component or fiscal year.  

If you have any questions about compensation or preferred payment, please don’t hesitate to reach out. We are committed to ensuring transparency, fairness, and mutual respect in all aspects of our collaboration. 

Tax Implications

Any cash payment totaling $500 or more in a calendar year is considered taxable income. The Ottawa Hospital Research Institute will issue a T4A for these payments. The T4A statements are sent by mail. Please ensure mailing address information is up to date with Jennifer, jebrownrigg@ohri.ca.  

Please note:

• The HERO team is not able to answer tax-related questions.  
• Compensation payments may alter the benefits status for individuals on disability, pension, or other forms of income.

To learn more about tax implications, please consider the following guidelines from the Canada Revenue Agency:  

• Employment Income (includes honoraria)
• Receiving Gifts
• Gifts and Income Tax
• Expenses incurred by volunteers
• Community Volunteer Income Tax Program 

Health Technology Assessment: A multidisciplinary process that uses explicit methods to determine the value of a health technology at different points in its lifecycle. The purpose is to inform decision-making in order to promote an equitable, efficient, and high-quality health system (11).

Economic Evaluations: A specific type of health economic analysis that explicitly compare the costs (use of resources) and consequences (effects) of the health intervention(s) in question to an alternative course of action, known as the comparator (12).

Cost Effectiveness Analysis: A form of comparative economic analysis that evaluates two or more policy alternatives in terms of their relative costs and outcomes, where the outcomes are measured in a single natural unit (e.g. life-years gained, disease case averted etc) (12).

Cost Benefit Analysis: A form of comparative economic analysis that evaluates two or more policy alternatives in terms of their relative costs and outcomes, where both the costs and outcomes are expressed in monetary terms (12).

Cost Minimization Analysis: A form of comparative economic analysis that compares the costs of two or more policy alternatives which are all assumed to have equivalent health effects (12).  

Cost Utility Analysis: A form of comparative economic analysis that evaluates two or more policy alternatives in terms of their relative costs and outcomes, where the outcomes are expressed by a generic measure of health status that considers both the effect on mortality and morbidity (e.g., quality-adjusted life-years (QALYs) (12).

Patient Engagement: Meaningful and active collaboration between researchers and patient partners in governance, priority setting, conducting research, and knowledge translation. Depending on the context, patient-oriented research may also engage people who bring the collective voice of specific, affected communities (13).

Patient Partner: An overarching term inclusive of anyone with lived experience of a health condition, including patients, caregivers, and family members, who are actively involved in research beyond simply being a research participant. This engagement can involve various roles, like participating on governing boards, co-developing research methodology, or contributing to knowledge translation (10).

Scoping Review: A type of literature review that aims to systematically map the breadth of evidence on a specific topic, identifying key concepts, research gaps, and the types of evidence available (14).

Umbrella Review: A systematic collection and assessment of multiple systematic reviews and meta-analyses on a specific research topic (15).

Delphi Survey: A structured technique to gather expert opinions on a specific topic through multiple rounds of anonymous questionnaires, aiming to achieve a consensus or convergence of views. An eDelphi uses software designed for the qualitative processes of the Delphi method (16).

Purpose: To be completed by the co-PIs or staff together with the patient and public partner(s) to outline engagement details as part of the onboarding process. Its purpose is to document a shared understanding of how the patient partner(s) would like to be involved in the project. This form should follow a collaborative conversation between the patient partner(s) and the project team to explore interests, comfort levels, available time, and preferred types of engagement. It is not meant to be prescriptive or binding, but rather a flexible record that can evolve as the project progresses and roles shift.

This form is one way we support transparency, respect, and mutual understanding in our partnership.

1. Project Team Information

• Project lead:  
• Project team members:
• Point of contact for patient and public partners:  

2. Project Details  

• Project topic:  
• Review type:  
  • Living Review? If so, how often is it updated?
• Project start date:
• Project end date:  
• Project type:  
• Primary form of communication:
  • Please enter details (email address, phone number)
• Frequency of updates:

3. Engagement Details  

Intended degree of engagement (8):  

▢ Level 1 Inform: Receive easy-to-understand, objective, and balanced information. 
▢ Level 2 Consult: Provide feedback on research direction, progress, outcomes, analysis and interpretation. 
▢ Level 3 Involve: Two-way information exchange and conversations. 
▢ Level 4 Collaborate: Engage in each aspect of the decision in research and research-related activities. 
▢ Level 5 Empower: Shared decision-making responsibilities.

Steps during the project that patients and public partners will be engaged in (select all that apply):  

▢ Identifying patient-driven research priorities 
▢ Participating in the grant writing and review process 
▢ Reviewing and developing the research question and research project outcomes 
▢ Developing data collection tools and communication materials (e.g., flyers, emails) 
▢ Contributing and guiding data analysis and interpretation of data 
▢ Creating a plain language summary 
▢ Reviewing conclusions and key messages 
▢ Advising on dissemination strategies 
▢ Developing and implementing interventions 
▢ Evaluating the level of patient/public engagement during the project 
▢ Other:  

Anticipated Time Commitment: Please be as specific as possible. Number of hours for the entire engagement within a specific timeframe. For example, 2-3 hours per week from July 2nd to July 30th.  

Recognition of Involvement:

▢ Acknowledgement in the final report 
▢ Acknowledgment in media and promotional materials (e.g., website, newsletters, social media posts) 
▢ Acknowledgement in project presentations (e.g., conferences, webinars)   
▢ Invitation to co-present findings 
▢ Authorship in the manuscript 
▢ Other:  

4. Compensation Details

• Hourly compensation rate (10):  
• How often hours will be collected (i.e., payment frequency):  
• Who to submit your hours to (Name, email):  
• Where payments will be coming from (i.e., project team’s host institution):  
• Format of payments offered (e.g., cash, cheque, or gift card):  

5. Patient and Public Partner Signature  

• By signing below, you are acknowledging that you agree that have read the project, engagement, and compensation details above and agree to the terms listed above. 

Adapted from SPOR Evidence Alliance’s Patient and Public Partner Financial Compensation Policy (10)

As a valued patient or public partner of DEEP-ENGAGE, your contributions and time are important to us. If you feel your hours have been inaccurately logged, please use this tracking sheet to report more accurate hours spent on your activities conducted for DEEP-ENGAGE. For more details, including available payment options, please review the Compensation and Reimbursement section.

Timeline: We will internally keep track of additional hours on your behalf and share them for your review at the end of each project component or fiscal year.  

Patient Partner Engagement and Activity Log:  

First and last name:  

Period of Engagement (E.g. April 2025 – March 2028):  

Payment Consent

▢ I wish to accept payment by electronic Funds transfer (EFT).  
▢ I wish to discuss other forms of payment (we will contact you to discuss).  
▢ I do not wish to receive any form of payment.  

Privacy & Confidentiality  

Information provided will be strictly used for payment purposes and has been stored securely in The Ottawa Hospital Research Institute network drive. They will be accessible only to the nominated principal investigator, study team and office of research administration at OHRI. Should there be any breach of privacy, you will be informed right away, but the chance that this information will be accidentally released is judged to be very small. Please do not share personal information (e.g., social insurance number, banking details) over the phone, email hero@ohri.ca, and Jennifer Brownrigg will schedule a call with you.  

By signing below, you are acknowledging that you completed the work above and agree to receive recognition in the preferred form of payment selected above.  Adapted from SPOR Evidence Alliance’s Patient and Public Partner Financial Compensation Policy (10)

Adapted from SPOR Evidence Alliance’s Patient and Public Partner Financial Compensation Policy (10)