Patient Design

As a patient navigating my own chronic condition, I've witnessed the breakdown of the traditional healthcare model. The era of the physician as the sole authority is over. Patients want to be involved regardless of how the medical establishment feels.

To the medical leaders, researchers, and administrators on my timeline: Your organizations are proclaiming "patient centricity," but we must ask if we are truly practicing it or merely engaging in tokenism. This gap is a governance failure that impacts clinical outcomes, system integrity, and above all patient trust.

The transition to Patient Design is not an option; it's a paradigm shift fueled by information liquidity and advanced consumer health technologies that demand a new equal-level partnership.

Tokenism vs. Partnership: The Governance Difference

The critical distinction is one of power and accountability. Token patient centricity allows stakeholders to claim patient involvement without ceding decision-making authority. Patient Design formalizes the patient as a true partner with shared power at the highest levels of agenda setting.

Here is how we must define the divide:

Involvement: In Token Centricity, patients are consulted only passively, when invited by the power holders. In Patient Design: Patients as Partners, involvement is active at all times, with their expertise acknowledged.

Decision Power: Under Token Centricity, patients have None; their opinions are sought but need not be heeded, which sociologist Sherry Arnstein bluntly called tokenism. In Patient Design, decision power is shared, and patients actively influence design and agenda decisions.

Influence: In Token Centricity, patients may influence any level within the organization. In Patient Design, patients influence the highest level of decision-making, sitting on boards that set agendas.

This is not a mere semantic difference. It is a paradigm shift.

Conclusion: The Strategic Benefits of Shared Design

The shift to Patient Design is an essential strategic investment. It provides tangible, measurable benefits:

Improved Innovation: Patient Design yields more original ideas and achieves better consumer value by incorporating the voice of the person for whom the project exists. This ultimately leads to reduced development time.

Enhanced Trust and Adherence: Actively involving patients in co-design builds a better relationship between patients and organizations. For chronic conditions, this shared decision-making is essential for increasing patient satisfaction and support.

Governance Resilience: Formalizing the patient's role helps establish clear accountability and transparency, which are non-negotiable for integrating AI safely into care.

To achieve medicine's new potential, our methods and our paradigm must change, optimizing systems around the wants and priorities of the ultimate stakeholder, the patient.