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A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
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Rethinking patient involvement in healthcare priority setting.

Lars Sandman1, Bjorn Hofmann2, Greg Bognar3

  • 1National Centre for Priorities in Health, Department of Health, Medicine and Caring Sciences, Linköping University, Sweden.

Bioethics
|April 26, 2020
PubMed
Summary
This summary is machine-generated.

Arguments for including patient representatives in healthcare priority setting bodies are critically examined. Standard justifications like patient relevance and legitimacy are found insufficient, suggesting alternative participation models are needed.

Keywords:
deliberative democracyempowermentlegitimacypatient involvementpriority settingrationing

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Area of Science:

  • Health Policy
  • Health Services Research
  • Bioethics

Background:

  • Healthcare systems face resource scarcity and increasing demand, necessitating difficult priority-setting decisions.
  • Growing emphasis on patient involvement raises questions about patient representation in policy-level decision-making bodies.
  • The inclusion of patients in priority setting is proposed to enhance decision relevance and legitimacy.

Purpose of the Study:

  • To critically evaluate the arguments for including patient representatives in policy-level healthcare priority setting bodies.
  • To assess the validity of standard justifications for patient representation in this specific context.
  • To propose an alternative model for patient participation in healthcare priority setting.

Main Methods:

  • Argumentative analysis of existing justifications for patient representation.
  • Critical review of literature on patient involvement in health policy.
  • Conceptual development of an alternative framework for patient participation.

Main Results:

  • Standard justifications for patient representation (e.g., patient-relevance, empowerment, legitimacy, democratic analogy) are found to be inadequate for policy-level priority setting bodies.
  • The direct inclusion of patient representatives in these bodies does not sufficiently address the complexities of resource allocation decisions.
  • Existing rationales do not fully support the practical implementation of patient representatives in such high-level policy forums.

Conclusions:

  • The direct inclusion of patient representatives in policy-level priority setting bodies is not adequately supported by current justifications.
  • Alternative models of patient participation, such as utilizing patient consultants, may offer a more effective approach.
  • Further research is needed to develop and evaluate alternative frameworks for meaningful patient involvement in healthcare priority setting.