Clinical guidelines may not reflect the patient perspective.
Clinical practice guidelines are systematically developed recommendations that describe how patients with a given health problem should be treated. Designed to help patients feel better, guidelines are developed by clinical experts who do not always know what patients really want or care about the most.
Why is engaging patients important?
Incorporating patient perspectives in guidelines can help clinicians engage their patients in shared decisionmaking and jointly make decisions that are based in clinical and patient-generated evidence.
Patient perspectives add a valuable dimension to clinical guidelines because they can help identify factors that may affect guideline adherence.
Knowing what patients want, value, or find challenging about a given treatment can improve care quality and patient experiences.
A new online approach for large-scale patient engagement in clinical guideline development.
RAND worked with Parent Project Muscular Dystrophy (PPMD), a patient advocacy organization, to develop the RAND/PPMD Patient-Centeredness Method, or RPM. Our method helps patients, caregivers, and patient advocates systematically share their perspectives on the patient-centeredness of guideline recommendations – the topic in which they have the most expertise.
What is RPM?
RPM is a robust analytical approach for querying patient perspectives and exploring consensus in large and diverse groups.
The RPM is grounded in the RAND-developed modified-Delphi method, which is used to determine clinical appropriateness and necessity. It replicates the iterative process that clinicians and researchers go through to develop guideline recommendations but allows large and diverse groups of patients and their representatives to share their expertise from the comfort of their homes using any internet-connected device.
The RPM helps guideline developers determine patient-centeredness of draft recommendations developed based on the systematic review of existing evidence and their clinical expertise. The input from patients and their representatives is solicited iteratively before the guidelines are finalized to ensure that recommendations are consistent with patients’ care preferences and needs. Doing so helps implement two criteria of the GRADE Evidence to Decision Framework: outcome importance and intervention acceptability.