Patient and public engagement is widely recognized as a core component of health services research and health technology assessment (HTA). Across jurisdictions, patients are increasingly involved in priority setting, evidence appraisal, and decision-making (see, for example, Scott and Wale, 2017; Gagnon et al, 2021). The rationale is clear: decisions about healthcare should reflect not only clinical and economic evidence, but also the lived experiences of those most affected.
However, when we turn to economic evaluation and health economics in general, patient engagement remains more the exception than the norm. This is striking, given the central role that economic evidence plays in HTA and resource allocation. Emerging guidance, including the updated Consolidated Health Economic Evaluation Reporting Standards (CHEERS) checklist, emphasize the importance of patient engagement in economic evaluations, but the how remains unclear.
Currently, patient perspectives are most often incorporated indirectly. They enter analyses through preference-based measures (e.g., utility values used to generate quality-adjusted life years), assumptions about resource use, or occasionally through inputs derived from patient-reported outcome measures. In some cases, patient perspectives inform model parameters, but patients themselves are rarely involved in determining which outcomes matter, how pathways are structured, or how results should be interpreted.
Why patient perspectives matter for economic evaluation
Economic evaluations rely on assumptions about how patients experience illness, interact with healthcare systems, and value outcomes. Patients can offer insights that are difficult to capture using indirect methods alone. These include the day-to-day experiences of living with a condition; the time, effort, and uncertainty associated with treatment; impacts on caregivers and families; and broader effects on quality of life.
At the same time, it is not hard to see why patient engagement has been slower to take hold in economic evaluations. Methods can often be technically complex, terminology unfamiliar, and there is little practical guidance on how engagement should work in this context. This raises important methodological questions:
- At what stage should patients be involved (model conceptualization, parameter selection, interpreting results)?
- What forms of engagement are most appropriate for different types of analyses?
- How can engagement be structured to ensure it is meaningful rather than tokenistic?
In the context of decision modelling, Harvard and Werker (2021) provide food for thought on these questions. In short, while the case for patient engagement is solid, the how remains underdeveloped.
Introducing DEEP-ENGAGE
This is the gap that DEEP-ENGAGE (Developing EvidEnce-informed Patient ENGAGEment guidance for economic evaluations) seeks to address. DEEP-ENGAGE is a research initiative focused on understanding, strengthening, and supporting patient engagement in economic evaluation. Our goal is to co-create practical, evidence-informed guidance on when, where, and how to meaningfully engage patients across all stages of an economic evaluation. While the work is based in Canada, the ambition is to provide guidance that is internationally informed and adaptable to different HTA and research contexts.
Help shape the evidence base
An essential first step is to understand current practice: what is happening now, where engagement is occurring, and what challenges researchers face.
To do this, we are conducting an international survey of health economists and health services researchers with experience in economic evaluation. We are particularly interested in perspectives from those who conduct, oversee, review, or commission evaluations, as well as those with methodological expertise in areas such as costing or decision-analytic modelling.
The survey focuses on a number of areas:
- To what extent are patients and members of the public currently being engaged in economic evaluations?
- At which stages of the process does this engagement occur?
- What forms does this engagement take?
- What are the perceived benefits and the challenges?
We are also interested in broader perspectives: how researchers conceptualize the role of patients in economic evaluation, and what factors might enable or constrain more meaningful engagement.
The survey has been co-designed with patient partners, who have contributed to shaping the research questions, refining the survey instrument, and informing recruitment strategies. Their involvement reflects a core principle of DEEP-ENGAGE: that efforts to strengthen patient engagement should themselves be informed by patient perspectives.
The survey is crucial to future DEEP-ENGAGE work as well. Findings will inform subsequent qualitative interviews and an eDelphi process aimed at developing consensus-based guidance for patient engagement in economic evaluation. Survey respondents will have the option to express interest in participating in these next steps.
If you are involved in economic evaluation, as a researcher, analyst, reviewer, or decision-maker, we would like to hear from you! The survey should take approximately 10-15 minutes.
Your experience and perspectives are essential to building a clearer, more practical path forward. We anticipate that the findings from this work will help identify practical opportunities to strengthen patient engagement in economic evaluation, while also highlighting areas where further methodological development or support may be needed.
