Evidence map›Paper›PMID 39655004›Full record

ArticleJournal of clinical and translational science2024

"Do they REALLY trust us"?: Lessons from a volunteer research registry.

Sylk Sotto-Santiago, Sarah Wiehe, Brenda Hudson, James Slaven, Conor Vinaixa, Rebecca Bruns, Gina Claxton, Lynsey Delp, Dustin Lynch, Sharon Moe

Abstract read
In one paragraph

Article in Journal of clinical and translational science, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. 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

10 authors.

Sylk Sotto-SantiagoDepartment of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA.ORCID https://orcid.org/0000-0003-3810-1205
Sarah WieheIndiana Clinical and Translational Sciences Institute, Indianapolis, IN, USA.ORCID https://orcid.org/0000-0002-8148-0848
Brenda HudsonIndiana Clinical and Translational Sciences Institute, Indianapolis, IN, USA.
James SlavenDepartment of Biostatistics and Health Data Science, Indiana University School of Medicine, Indianapolis, IN, USA.
Conor VinaixaMedical Education, Indiana University School of Medicine, Indianapolis, IN, USA.
Rebecca BrunsMedical Education, Indiana University School of Medicine, Indianapolis, IN, USA.
Gina ClaxtonIndiana Clinical and Translational Sciences Institute, Indianapolis, IN, USA.
Lynsey DelpIndiana Clinical and Translational Sciences Institute, Indianapolis, IN, USA.
Dustin LynchIndiana Clinical and Translational Sciences Institute, Indianapolis, IN, USA.
Sharon MoeDepartment of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: All IN for Health is a well-established community-academic partnership dedicated to helping improve the lives of Indiana residents by increasing health research literacy and promoting health resources, as well as opportunities to participate in research. It is sponsored by the Indiana Clinical and Translational Science Institute (I-CTSI). The study's purpose was to measure trust in biomedical research and healthcare organizations among research volunteers. Methods: The Relationship of Trust and Research Engagement (RTRE) survey was developed utilizing 3 validated scales. The RTRE consisted of 36 items in a 5-point Likert scale with three open-text questions. We conducted 3 focus groups with a total of 24 individuals ahead of the survey's launch. Recruitment was done through the All IN for Health newsletter. The survey was administered in the summer of 2022. Results: Six hundred and sixty-three individuals participated in the survey. Forty-one percent agreed that doctors do medical research for selfish reasons. Moreover, 50% disagree that patients get the same medical treatment regardless of race/ethnicity. Sixty-seven percent think it is safe to participate in medical research, yet 79% had never been asked to participate. Ten percent believe that researchers select minorities for their most dangerous studies and expose minoritized groups to diseases. Conclusion: The utilization of tools to measure trust will facilitate participant recruitment and will assist institutions and investigators alike in accountability. It is imperative, we work toward understanding our communities' trust in medical research, assessing our own trustworthiness, and critically reflect on the authenticity of our efforts.

Indexed as

clinical trialsdiversityregistryTrusttrustworthiness

Identifiers

PMID39655004
PMCPMC11626595

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.