Evidence map›Paper›PMID 39822922›Full record

ArticleLearning health systems2025

Lessons for a learning health system: Effectively communicating to patients about research with their health information and biospecimens.

Kayte Spector-Bagdady, Kerry A Ryan, Luyun Chen, Camille Giacobone, Reshma Jagsi, Reema Hamasha, Katherine Hendy, J Denard Thomas, Jessie M Milne, Alexandra H Vinson and 1 more

Abstract read
In one paragraph

Article in Learning health systems, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

11 authors.

Kayte Spector-BagdadyDepartment of Obstetrics and Gynecology University of Michigan Ann Arbor Michigan USA.ORCID https://orcid.org/0000-0002-5851-6224
Kerry A RyanCenter for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor Michigan USA.ORCID https://orcid.org/0000-0002-0582-3693
Luyun ChenDepartment of Obstetrics and Gynecology University of Michigan Ann Arbor Michigan USA.
Camille GiacoboneSchool of Public Health University of Michigan Ann Arbor Michigan USA.
Reshma JagsiDepartment of Radiation Oncology Emory University School of Medicine Atlanta Georgia USA.
Reema HamashaDepartment of Learning Health Sciences University of Michigan Ann Arbor Michigan USA.
Katherine HendySchool of Public Health University of Michigan Ann Arbor Michigan USA.
J Denard ThomasCenter for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor Michigan USA.
Jessie M MilneCenter for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor Michigan USA.
Alexandra H VinsonCenter for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor Michigan USA.
Jodyn PlattCenter for Bioethics and Social Sciences in Medicine University of Michigan Ann Arbor Michigan USA.

Funding

Michigan Institute for Clinical and Health Research (MICHR)UM1TR004404 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI Julie C Lumeng · 2023 to 2026
$39.8M
Public trust of artificial intelligence in the precision CDS health ecosystem - Administrative SupplementR01EB030492 · NIBIB · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI PLATT, JODYN ELIZABETH · 2021 to 2024
$3.1M
The Lifecycle of Health Data: Polices and PracticesR01CA214829 · NCI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI KARDIA, SHARON L, PLATT, JODYN ELIZABETH · 2018 to 2021
$2.4M
Hospitals Sharing Patient Data and Biospecimens with Commercial Entities: Evidence-Based Translation to Improved PracticeR01TR004244 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SPECTOR-BAGDADY, KAYTE KELLEHER · 2022 to 2025
$1.9M
NCATS NIH HHS R01 TR004244NCATS NIH HHS UM1 TR004404NCI NIH HHS R01 CA214829NIBIB NIH HHS R01 EB030492
6 · The paper itself

Abstract

Introduction: Sharing patient health information and biospecimens can improve health outcomes and accelerate breakthroughs in medical research. But patients generally lack understanding of how their clinical data and biospecimens are used or commercialized for research. In this mixed methods project, we assessed the impact of communication materials on patient understanding, attitudes, and perceptions. Methods: Michigan Medicine patients were recruited for a survey ( Results: Among survey respondents, the type of intervention (poster vs. news) made no statistically significant difference in its influence on any characteristic. However, 95% preferred that Michigan Medicine tell them about patient data and biospecimen research sharing versus hearing it from the news. Focus group participants provided additional insights, discussing values and perceptions of altruism and reciprocity, concerns about commercialization, privacy, and security; and the desire for consent, control, and transparency. Conclusion: Developing our understanding of patient data-sharing practices and integrating patient preferences into health system policy, through this work and continued exploration, contributes to building infrastructure that can be used to support the development of a learning health system across hospital systems nationally.

Indexed as

autonomydata sharinginformed consentresearch

Identifiers

PMID39822922
PMCPMC11733471

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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.