It takes a village: reimagining patient centricity for rare disease families in low- and middle-income countries

Patient centricity is widely recognized as a cornerstone of high-quality healthcare and an ethical imperative in health system design. The WHO has emphasized the importance of placing people, and critically, communities, at the center of healthcare delivery through integrated, people-centered systems [1].

However, translating this principle into practice requires contextual adaptation. In LMICs, rare disease care unfolds within social ecosystems that extend far beyond the individual. Illness affects not only patients, but also families, caregivers, and, in many cases, entire communities. Rare diseases are associated with substantial psychosocial and economic burdens, including stigma, barriers to care and reduced social participation [2].

Within these environments, the impact of a rare diagnosis is rarely contained. Emotional strain, caregiving responsibilities and financial pressures frequently diffuse across extended family networks. Cultural interpretations of illness – often shaped by religious beliefs or local traditions, further influence how care is sought, understood and sustained [3].

Health system models designed for high-income contexts often assume access to specialized services, stable infrastructure and individual autonomy in decision-making. These assumptions are frequently misaligned with realities in LMICs. Instead, care is often maintained through informal networks: families develop expertise, neighbors provide support and community figures – including traditional healers, play meaningful roles in health-seeking behavior. Traditional and complementary medicine remains an integral component of care for many populations, particularly where it is more accessible and culturally aligned [4].

Acknowledging these dynamics is not optional, but essential for designing patient-centered approaches that are both effective and contextually appropriate.

In this context, advocacy for patient centricity must extend beyond the individual patient voice. It requires a broader, more inclusive understanding of who constitutes ‘the patient’ in LMIC settings.

Care is frequently co-produced by a network of individuals: parents, extended family members, educators, community health workers and informal caregivers. Their contributions shape diagnostic pathways, treatment adherence and long-term outcomes. Patient-centered frameworks must therefore evolve toward community-inclusive models that recognize collective responsibility and shared decision-making [5].

This shift aligns with global calls to strengthen community engagement in healthcare and move toward more participatory, locally grounded models of care delivery.

Despite growing recognition of the importance of patient centricity, several structural and contextual barriers continue to limit its implementation.

A significant gap remains in the global evidence base on patient centricity in LMIC rare disease contexts. Much of the existing literature is derived from high-income settings and reflects assumptions that may not hold in resource-constrained environments.

Rare diseases affect an estimated 300 million people worldwide yet remain underrepresented in research and policy discussions [12]. Key areas requiring further exploration include:

Without this evidence, efforts to implement patient-centered care risk remaining incomplete or misaligned with the needs of affected populations.

In LMIC contexts, patient centricity must be understood not as an individualized concept, but as a collective and relational model of care. Rare disease experiences are embedded within families and communities, where care is shared and shaped by social, cultural and economic realities.

Reimagining patient centricity in these settings requires a fundamental shift, from focusing solely on individuals to recognizing the interconnected systems that sustain them. Only through such an approach can patient-centered care become truly inclusive, equitable and effective.

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

The author is Chief Community Impact Officer of A Rare Cause, a non-profit organization based in England and Wales working across multiple LMICs, and Chief Medical Officer and Co-Founder of Decentra Health, a for-benefit company based in the US working with LMIC partners. The authors have no other competing interests or relevant affiliations with any organization or entity with the subject matter or materials discussed in the manuscript apart from those disclosed.

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

During the preparation of this manuscript, artificial intelligence (AI) tools were used to support language editing, improve semantic clarity, refine stylistic elements, and assist in identifying relevant literature. All AI-assisted outputs were critically reviewed, validated, and, where necessary, revised. The author takes full responsibility for the accuracy, integrity, and originality of the final manuscript.

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