Evidence map›Paper›PMID 41726402›Full record

ArticleAMIA ... Annual Symposium proceedings. AMIA Symposium2024

Technology and Human Support Systems in Decentralized Studies: A Participant-Centered Case Study in Cystic Fibrosis.

Ayana Sarrieddine, Claire Lai, Oliver Bear Don't Walk, Nick F H Reid, Gregory Sawicki, Ariel Berlinski, Margaret Rosenfeld, Andrea L Hartzler

Abstract read
In one paragraph

Article in AMIA ... Annual Symposium proceedings. AMIA Symposium, 2024. 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

8 authors.

Ayana SarrieddineUniversity of Washington, Seattle, WA, USA.
Claire LaiUniversity of Washington, Seattle, WA, USA.
Oliver Bear Don't WalkUniversity of Washington, Seattle, WA, USA.
Nick F H ReidUniversity of Washington, Seattle, WA, USA.
Gregory SawickiBoston Children's Hospital, Boston, MA, USA.
Ariel BerlinskiArkansas Children's Hospital, Little Rock, AR, USA.
Margaret RosenfeldUniversity of Washington, Seattle, WA, USA.
Andrea L HartzlerUniversity of Washington, Seattle, WA, USA.

Funding

University of Washington Biomedical Informatics and Data Science Research Training ProgramT15LM007442 · NLM · UNIVERSITY OF WASHINGTON · PI JOHN H. GENNARI, Andrea L. Hartzler · 2002 to 2026
$19.6M
Collaboratively Identifying Population-Specific Social Determinants of Health for Indigenous Patients Living with HIV: From Patient Perspectives to the Electronic Health RecordK99LM014579 · NLM · UNIVERSITY OF WASHINGTON · PI BEAR DON'T WALK, OLIVER JOHN · 2024 to 2025
$176k
NLM NIH HHS K99 LM014579NLM NIH HHS T15 LM007442
6 · The paper itself

Abstract

As the integration of informatics into clinical research reshapes the landscape of decentralized studies, optimizing participant experience remains a key challenge. Although prior research has established foundations for decentralized study design, a more comprehensive understanding of participant perspectives is essential to ensure remote methods for data collection meet participant needs. This study contributes to a growing literature in participant-centered decentralized studies through an analysis of OUTREACH, a 3-month home spirometry study among individuals with cystic fibrosis. Through a qualitative analysis of 46 participant exit interviews, we identified three overarching categories that influenced participant experience: motivators, technological infrastructure, and human coordination. Our findings emphasize the value of reliable technology and comprehensive interpersonal support systems. These findings shed light upon the importance of sociotechnical elements for optimizing participant experience, which may enhance the quality of clinical study data through meaningful participant engagement.

Indexed as

Cystic FibrosisHumansSpirometry

Identifiers

PMID41726402
PMCPMC12919454

What OpenQuestion holds

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Registered trials

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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.