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Reconsidering patient participation in guideline development
Hester M van de Bovenkamp1, Margo J Trappenburg
1Institute of Health Policy and Management, Erasmus Medical Centre Rotterdam, iBMG J8-47, Postbus 1738, 3000 DR, Rotterdam, The Netherlands. h.vandebovenkamp@erasmusmc.nl
Health Care Analysis : HCA : Journal of Health Philosophy and Policy
|December 23, 2008
Summary
Patient involvement in medical guideline development is recommended but lacks empirical support. Patients face participation challenges, suggesting a need to reconsider this approach for patient-centered healthcare.
Area of Science:
- Health Services Research
- Patient Engagement
- Clinical Guideline Development
Background:
- Healthcare is increasingly patient-centered.
- Medical guidelines are key instruments for patient-centered care.
- Active patient participation is proposed to enhance guideline patient-centeredness.
Purpose of the Study:
- To review literature on patient participation in medical guideline development.
- To assess the empirical evidence for patient participation enhancing guideline quality.
- To identify challenges patients face during guideline development.
Main Methods:
- Systematic literature review.
- Analysis of both normative and empirical studies.
- Evaluation of evidence supporting patient participation in guideline creation.
Main Results:
- No empirical evidence found to support that patient participation improves guideline quality.
- Studies indicate patients encounter significant difficulties in the participation process.
- These difficulties are not solely attributable to poor implementation.
Conclusions:
- The assumption that active patient participation inherently enhances guideline quality is not empirically supported.
- Reconsideration of the mandate for active patient involvement in guideline development is warranted.
- Alternative strategies may be needed to ensure patient-centered medical guidelines.
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