Get patients’ input on health reforms

Healthcare reform should not merely focus on altering structures or introducing new programs, but rather must involve patients in the process. Two realities coexist within healthcare systems: the institutional system, which involves the organization and delivery of care, and the patient system, which represents the actual experience and navigation of care. Both perspectives are crucial for effective reform that operates beyond the confines of meetings.

Reform can take years or even generations to fully impact, but this should not be an excuse to overlook the reasons for slow progress. The mechanism of change matters; just as clinical care and financing require expertise in their respective fields, the patient journey also demands patient partnership from the outset. Ignoring patients until the end can lead to discovering what could have been addressed earlier.

Patient partnership does not mean surrendering authority to institutions; rather, it equips decision-makers with a comprehensive understanding of the system they aim to change. Participation, representation, and partnership are distinct concepts. While an individual can share personal experiences without claiming to speak for others, an organization nominating a representative is different. Clear definitions of who the community is, the mandate of representation, and the flow of information back are essential.

Leadership in healthcare reform must extend beyond traditional boundaries, understanding where responsibilities intersect and maintaining accountability throughout the journey. A truly resilient health system adapts without losing sight of the patient experience, even in the face of workforce shortages, funding pressures, supply disruptions, or emergencies.

Bringing patients into the decision-making process is not a replacement for policymaking, clinical expertise, or institutional roles. Instead, it strengthens reform by incorporating the firsthand experience of navigating the healthcare system.