Evidence map›Paper›PMID 39025519›Full record

ArticleMedical humanities2025

Patients as knowledge partners in the context of complex chronic conditions.

Vox Jo Hsu, Megan Moodie, Abigail A Dumes, Emily Lim Rogers, Chelsey Carter, Emma Broder, Daisy Couture, Ilana Löwy, Emily Mendenhall

Abstract read
In one paragraph

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.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

7 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
  5. Article
  6. Patient Participation in AI for Health Curriculum.Journal of participatory medicine · 2025
    Article
  7. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Vox Jo HsuThe University of Texas at Austin, Austin, Texas, USA.
Megan MoodieUniversity of California Santa Cruz, Santa Cruz, California, USA.
Abigail A DumesWomen's and Gender Studies, University of Michigan, Ann Arbor, Michigan, USA.
Emily Lim RogersDuke University, Durham, North Carolina, USA.
Chelsey CarterYale University School of Public Health, New Haven, Connecticut, USA.
Emma BroderHarvard University, Cambridge, Massachusetts, USA.
Daisy CouturePrinceton University, Princeton, New Jersey, USA.
Ilana LöwyFrench National Institute for Health and Medical Research, Paris, France.
Emily MendenhallSchool of Foreign Service, Georgetown University, Washington, District of Columbia, USA em1061@georgetown.edu.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Biomedical ResearchChronic DiseaseHealth Knowledge, Attitudes, PracticePatient ParticipationHumansSocial SciencesCOVID-19EducationEthicspatient narratives

Identifiers

PMID39025519
PMCPMC11877039

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

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.