ArticleMedical humanities2025
Patients as knowledge partners in the context of complex chronic conditions.
Article in Medical humanities, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
7 citing papers in PubMed.
- Invisible Challenges of a Visible Disease: A Qualitative Study on Disease-related Impairment, Participation Barriers and Care Experiences in Adults with Ichthyosis.Acta dermato-venereologica · 2026Article
- Participatory Digital Twins for Chronic Care: From Predictive Models to Shared Sensemaking.Journal of participatory medicine · 2026Article
- Understanding Online Health Information Consumption Through Web Analytics of the Italian Society of Pharmacology Magazine: 3-Year Descriptive Analysis.JMIR formative research · 2026Article
- 'Living Well With a PICC at Home': Co-Design and Evaluation of a Peripherally Inserted Central Catheter (PICC) Booklet.Journal of advanced nursing · 2026Article
- Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through a Point-of-Care Clinical Algorithm.International journal of environmental research and public health · 2026Article
- Patient Participation in AI for Health Curriculum.Journal of participatory medicine · 2025Article
- Complex chronic adverse events following immunization: a systemic critique and reform proposal for vaccine pharmacovigilance.Therapeutic advances in drug safety · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient knowledge is often undervalued, even when clinicians have limited training in diagnosing and treating a particular condition. Despite growing acknowledgement of the importance of patients as 'stakeholders', clinicians and medical researchers have yet to fully develop ways to evaluate and, when appropriate, meaningfully incorporate patient knowledge-experiential, scientific, social scientific, historical or otherwise-into clinical practice and research. We argue that there are opportunities for clinicians and researchers to collaborate with patients and colleagues from the social sciences and humanities. We use two examples to demonstrate why patient knowledge should inform medical engagement with chronic and complex conditions. The first comes from a disability studies scholar who describes the social biases that can sideline patient expertise, and the second is from an anthropologist whose reading in medical humanities led to an effective treatment for her recovery. Rather than merely acknowledging 'lived experience', clinical and research teams should include patients with complex chronic conditions as 'knowledge partners'. These patients occupy unique and valuable epistemological positions, and their knowledge should be considered with as much openness and rigour as other forms of medical knowledge. As more medical schools, residency programmes and hospitals emphasise the need for 'deep listening' and patient input, we encourage meaningful engagement with patients whose insights can provide crucial knowledge for clinical and scientific advancement.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.