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Patient-oriented research, involving patients as partners, ensures studies address priorities and yield practical results. This approach enhanced a discrete choice experiment by incorporating patient insights and improving study design and relevance.

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Area of Science:

  • Health Economics
  • Patient-Centered Research
  • Clinical Trial Design

Background:

  • Patient-oriented research integrates patients as partners to ensure research aligns with priorities and translates into practice.
  • Discrete choice experiments (DCEs) are valuable tools for understanding patient preferences but require careful design to remain relevant.

Purpose of the Study:

  • To report on a patient-oriented research approach for developing a discrete choice experiment (DCE) using a case study of stem cell transplant preferences in scleroderma.
  • To evaluate the impact of patient partnership on DCE design and outcomes.

Main Methods:

  • A case study approach was used, applying Canada's Strategy for Patient-Oriented Research principles: inclusiveness, support, mutual respect, and co-build.
  • Patient partners were engaged at various levels throughout the study, from design to analysis, with flexible meeting arrangements.
  • The study examined institutional constraints, such as reimbursement policies, affecting patient partner involvement.

Main Results:

  • The patient-oriented research approach led to the inclusion of crucial attributes (e.g., multidisciplinary support) and realistic framing of sensitive topics (e.g., mortality, cost).
  • Patient involvement improved sample representativeness, minimized researcher bias, and ensured appropriate attribute selection and descriptions.
  • The approach highlighted limitations of DCE designs, emphasizing the need for patient relevance in methodological trade-offs.

Conclusions:

  • Adopting a patient-oriented research approach significantly enhances DCE design by incorporating unique patient expertise and perspectives.
  • Addressing institutional challenges is crucial for advancing patient-oriented health economics research and ensuring patient-centered outcomes.
  • Patient partnership in research design leads to more relevant, representative, and unbiased study findings.