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Developing a Patient-Centered Benefit-Risk Survey: A Community-Engaged Process.

Ilene L Hollin1, Caroline Young2, Caroline Hanson1

  • 1Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.

Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research
|October 8, 2016
PubMed
Summary
This summary is machine-generated.

Community engagement guided the design of a patient-centered benefit-risk survey for Duchenne/Becker muscular dystrophy (DMD). This process ensured the survey instrument was ethical, acceptable, and meaningful to the DMD community.

Keywords:
attribute developmentcommunity engagementpatient-centered benefit riskstated preferences

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Area of Science:

  • Patient-centered research
  • Health outcomes research
  • Regulatory science

Background:

  • Designing benefit-risk assessments requires input from diverse stakeholders.
  • Duchenne/Becker muscular dystrophy (DMD) patient and caregiver perspectives are crucial for relevant outcome measures.
  • Phase III trial results need translation into patient-relevant attributes.

Purpose of the Study:

  • To outline a community-engaged process for designing a stated-preference experiment.
  • To integrate patients, caregivers, advocates, clinicians, and sponsors in survey development.
  • To inform the conceptualization and design of a benefit-risk survey for DMD.

Main Methods:

  • A five-principle community-engaged research framework was applied.
  • Engagement occurred through leadership, stakeholder, and review committees.
  • Committees included patients, caregivers, clinicians, advocacy, and industry representatives.

Main Results:

  • 20 individuals across three committees participated in 15 hours of formal engagement.
  • Community input influenced attribute selection, survey length, wording, and eligibility.
  • Challenges included managing diverse perspectives and aligning clinical trial outcomes with patient-relevant ones.

Conclusions:

  • Community engagement successfully influenced study design for a relevant survey instrument.
  • The process ensured the survey was ethical, acceptable, and meaningful to the DMD community.
  • Enhanced patient-centered benefit-risk assessment supports regulatory decision-making.