Abstract

Plain language summaryIn Canada, the CADTH Common Drug Review helps ensure that scarce health care resources are used to fund the most effective drugs. Clinicians, researchers, payers, and patients all have important, but potentially different, ideas on what should be considered, to determine a drug’s value. Since 2010, CADTH has invited patient groups to contribute their perspectives to the Common Drug Review. We explored whether, and how, insights offered by patient groups are integrated into assessment reports and Recommendations by the CADTH Canadian Drug Expert Committee.After examining 30 completed drug assessments, we found that:Patient insights are used by CADTH reviewers to frame an assessment and are used by the expert committee to interpret the evidence.Drug trials do not always measure outcomes that patients consider important.Survival, symptom relief, the process of recovery, and maintaining health are all important aspects to consider when determining value during health technology assessments. Background Since 2010, Canadian patient groups have contributed to the CADTH Common Drug Review (CDR). CADTH conducts health technology assessments of new drugs to support publicly funded drug plans’ reimbursement decisions. We explored whether, and how, patient insights were integrated into assessment reports and Recommendations by the CADTH Canadian Drug Expert Committee (CDEC). Methods We descriptively analyzed 30 consecutive assessments. One researcher identified a set of issues, insights, and desired treatment outcomes provided by patient groups for each included drug assessment. We tracked the presence of each identified patient insight in the relevant assessment protocol, in clinical trials as reported in the assessment, and in the CDEC Recommendations. Additionally, patient insights were categorized by topic and grouped into a three-tier framework to explore the observed juxtaposition between immediate treatment outcomes as seen in clinical trials and the insights from patients living with a chronic condition. Results In 30 drug assessments, 119 patient insights were identified. Of these insights, 89 were included in assessment protocols; 61 in reported clinical trial data; and 67 insights were reflected upon within the CDEC Recommendations. Patient insights within the first framework tier (health status achieved) were frequently included in all aspects of CDR assessments. Within the second tier (progress of recovery), although two-thirds of patient insights were included in protocols, only one-third was reflected in reported trial data or in CDEC Recommendations. Insights within the third tier, which address the long-term consequences of illness and treatment, were even less frequently addressed in all aspects of CDR assessments. Conclusions Patients’ perspectives need not be “considered” in isolation. Patient insights are used by CADTH reviewers to frame an assessment and used by CDEC to interpret the evidence. As health technology assessments should address the indirect and unintended consequences of a technology, as well as its direct and intended effects, drug assessments should consider the progress of recovery and sustainability of health, in addition to survival and immediate health achieved.Electronic supplementary materialThe online version of this article (doi:10.1186/s40900-016-0036-9) contains supplementary material, which is available to authorized users.

Highlights

  • Since 2010, Canadian patient groups have contributed to the CADTH Common Drug Review (CDR)

  • Patient insights are used by CADTH reviewers to frame an assessment and used by Canadian Drug Expert Committee (CDEC) to interpret the evidence

  • Patient insights are used by CADTH reviewers to frame the assessment, and used by CDEC to interpret the assessment

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Summary

Introduction

Since 2010, Canadian patient groups have contributed to the CADTH Common Drug Review (CDR). CADTH conducts health technology assessments of new drugs to support publicly funded drug plans’ reimbursement decisions. Since 2003, the CADTH Common Drug Review (CDR) has assisted the participating plans in making these decisions by providing an assessment of new drugs’ clinical and costeffectiveness, as compared to currently available treatments. In 2010, CADTH created opportunities for patient groups to contribute to health technology assessments (HTAs) in the CDR process. Patients have unique knowledge about the disease and treatment that can and should inform an HTA [1] They are able to identify potential benefits and harms that are important to them and knowledgeably comment upon whether the benefits outweigh the harms that the treatment may have on other aspects of their lives [2]. In the “lifeworld,” the illness, as lived, may differ from the disease as described in the evidence-based guidelines and the outcomes measured in clinical trials. [4]

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