Patient-Centered Core Impact Sets: What They are and Why We Need Them

Area of Science:

• Health Services Research
• Patient-Reported Outcomes
• Evidence-Based Medicine

Background:

• Patient centricity is increasing, revealing a gap between patient-reported priorities and data collected in healthcare.
• Current healthcare decisions rely on an evidence base often considered inadequate by stakeholders.
• Patients frequently emphasize everyday life impacts, which differ from typical clinical outcomes.

Purpose of the Study:

• To advocate for an expanded definition of "impacts" in healthcare research and decision-making.
• To propose the development of patient-centered core impact sets for various diseases and patient subpopulations.
• To ensure that patient concerns beyond traditional health outcomes are incorporated into healthcare.

Main Methods:

• Gathering comprehensive inventories of life impacts from patients and caregivers regarding their disease and treatments.
• Implementing a formal prioritization process to identify a core set of critical impacts.
• Including patient-reported concerns alongside established health outcomes in the core set.

Main Results:

• A framework for developing patient-centered core impact sets is proposed.
• The methodology emphasizes inclusivity of patient and caregiver perspectives.
• The approach extends beyond conventional health outcomes to encompass broader life impacts.

Conclusions:

• A patient-centered core impact set is crucial for aligning healthcare with patient values.
• Developing these sets requires collaboration, leadership, and a structured blueprint.
• This initiative aims to improve the adequacy of the evidence base for healthcare decisions.