From patient voice to patient partnership: closing the implementation gap in healthcare

Frameworks such as the ‘Patient Focused Medicines Development Patient Engagement Quality Guidance’ [1] and initiatives led by European Patients' Forum [2] have already outlined principles for meaningful engagement [3,4].

Existing frameworks such as Patient Focused Medicines Development (PFMD)'s Patient Engagement Quality Guidance [1], the National Institute for Health and Care Research (NIHR) Standards for Public Involvement in Research [5], and the WHO framework on integrated, people-centred health services [6] already provide structured and system-level approaches for meaningful engagement. However, their translation into routine practice remains inconsistent.

Despite growing awareness, patient engagement remains fragmented, inconsistently applies, underfunded and dependent on individual goodwill rather than system design. This creates a structural paradox.

Patients are expected to contribute at a professional level, providing strategic insight, reviewing protocols, shaping policies while operating within systems that lack governance structures, compensation models and operational clarity.

Evidence increasingly shows that early and meaningful patient involvement improves trial recruitment, retention and relevance of outcomes [4,7]. Yet, involvement is still often introduced too late to influence design.

Several well-documented barriers persist across healthcare systems [8,9]:

Across Europe and globally, strong patient engagement initiatives exist. However, they remain isolated and difficult to scale. This results in repeated pilot projects rather than systemic progress. To move forward, patient centricity must be treated as a system capability. This requires:

Emerging work in organizations such as EUPATI [3] demonstrates the growing capacity of patient leaders. However, capacity alone is not sufficient if systems do not evolve in parallel.

One of the most persistent challenges is how evidence is defined. Lived experience is often positioned as anecdotal, whereas in reality it is a critial form of data.

However, for lived experience to influence systems, it must be, captured systematically, structured in usable formats, and intergrated into decision-making frameworks. This requires methodological development, but also a cultural shift in how evidence is valued across disciplines.

The Journal of Patient Centricity has an opportunity to move beyond describing challenges and actively shape solutions. This includes:

The journal can play a key role in bridging the gap between theory and practice.

To move from intention to implementation, the field must focus on:

This is not about adding new layers to existing systems, but redesigning them.

Patient centricity cannot remain an aspiration, but must become a system capability. From a patient perspective, the question is no longer whether we are heard but whether we are part of how decisions are made. If we are serious about improving outcomes, we must move beyond inclusion and commit to integration. This requires leadership, structure and accountability, and most importantly, it requires a shift in mindset, namely, from patients as participants to patients as partners.

The author(s) received no financial and/or material support for this research or the creation of this work.

The authors have no competing interests or relevant affiliations with any organization or entity with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

No funded writing assistance was utilized in the production of this manuscript.

The author declares that they used artificial intelligence-assisted tools in the creation of this manuscript, to improve language and readability. The authors reviewed and edited the content as needed and take full responsibility for the content of the publication.

This work is licensed under the Attribution-NonCommercial-NoDerivatives 4.0 Unported License. To view a copy of this license, visit https://creativecommons.org/licenses/by-nc-nd/4.0/