Evidence map›Paper›PMID 42228396›Full record

ArticleJournal of participatory medicine2026

Participatory Digital Twins for Chronic Care: From Predictive Models to Shared Sensemaking.

Qingrui Li, Bo Xie, Eric Johnson, Juan Li

Abstract read
In one paragraph

Article in Journal of participatory medicine, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

4 authors.

Qingrui LiN​O​R​T​H​ ​D​A​K​O​T​A​ ​S​T​A​T​E​ ​U​N​I​V​E​R​S​I​T, North Dakota State University, N​O​R​T​H​ ​D​A​K​O​T​A​ ​S​T​A​T​E​ ​U​N​I​V​E​R​S​I​TD​e​p​t​.​ ​4​0​0​0​-​ ​P​O​ ​B​o​x​ ​6​0​5​0​, Fargo, US.
Bo XieThe University of Texas at Austin, Austin, US.
Eric JohnsonUniversity of North Dakota, Grand Forks, US.
Juan LiN​O​R​T​H​ ​D​A​K​O​T​A​ ​S​T​A​T​E​ ​U​N​I​V​E​R​S​I​T, North Dakota State University, N​O​R​T​H​ ​D​A​K​O​T​A​ ​S​T​A​T​E​ ​U​N​I​V​E​R​S​I​TD​e​p​t​.​ ​4​0​0​0​-​ ​P​O​ ​B​o​x​ ​6​0​5​0​, Fargo, US.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

unstructuredHealth digital twins, computational models that integrate longitudinal data, simulation, and forecasting, are increasingly proposed as tools for chronic care management. Most current implementations, however, are expert-oriented, prioritizing technical optimization and clinical prediction while offering limited support for patient understanding, engagement, or participation. This orientation is particularly misaligned with chronic care, which unfolds largely outside clinical settings and depends on patients' daily decisions, social context, and sustained engagement over time. In this Viewpoint, we argue for reframing digital twins as participatory systems that support shared sensemaking among patients, caregivers, and clinicians, rather than functioning solely as directive, expert-facing tools. We propose a conceptual framework that positions participatory digital twins as boundary objects capable of bridging computational models, clinical reasoning, and lived experience. Within this framework, generative artificial intelligence serves as a translation and interaction layer, enabling plain-language dialogue, exploration of uncertainty, and "what-if" reasoning that allows users to interpret model outputs in relation to their own contexts, goals, and constraints. We outline key design principles for participatory digital twins, including visible uncertainty, negotiated rather than prescriptive care, mechanisms for incorporating patient context and social drivers of health, and governance structures that support accountability and recourse. At the same time, this approach depends on meaningful opportunities for participation, appropriate safeguards around generative interaction, and careful attention to privacy, consent, and uneven access to digital resources. By shifting the focus from optimization alone to understanding, interaction, and trust, participatory digital twins offer a pathway toward more equitable, human-centered, and sustainable models of AI-enabled chronic care.

Identifiers

PMID42228396
PMCPMC13290167

What OpenQuestion holds

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LicenceCC BY
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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.