Evidence map›Paper›PMID 35349678›Full record

ArticleJournal of the American Medical Informatics Association : JAMIA2022

Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: A report from the Strong Heart Study.

Cynthia Triplett, Burgundy J Fletcher, Riley I Taitingfong, Ying Zhang, Tauqeer Ali, Lucila Ohno-Machado, Cinnamon S Bloss

Registry-linked trialOpen access · hybridAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of the American Medical Informatics Association : JAMIA, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06230705 (Community Intervention to impRove CVD Risk Factor controL in Young AmErican Indians), which is not on this map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
1.6field-weighted citation impact, top 18% of its field
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.

NCT06230705 nanot yet recruitingnot on this mapstarted 2025, after this paper: background citation

Community Intervention to impRove CVD Risk Factor controL in Young AmErican Indians: The CIRCLE Study

TypeinterventionalSponsorUniversity of OklahomaRan2025 to 2029Enrolled360ConditionsCholesterol, Elevated, Diabetes MellitusArmsGuided management, Self management
3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 8 citations in OpenAlex.

  1. Article
  2. Article
  3. Centering the patient in informatics applications.Journal of the American Medical Informatics Association : JAMIA · 2022
    Article
  4. 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

7 authors at 4 institutions in 1 country.

Cynthia TriplettHerbert Wertheim School of Public Health and Longevity Science, University of California, La Jolla, California, USA.
Burgundy J FletcherDepartment of Ethnic Studies, University of California, La Jolla, California, USA.
Riley I TaitingfongHerbert Wertheim School of Public Health and Longevity Science, University of California, La Jolla, California, USA.
Ying ZhangDepartment of Biostatistics and Epidemiology, A Center for American Indian Health Research, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA.
Tauqeer AliDepartment of Biostatistics and Epidemiology, A Center for American Indian Health Research, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA.
Lucila Ohno-MachadoVeteran Affairs San Diego Healthcare System, San Diego, California, USA.
Cinnamon S BlossHerbert Wertheim School of Public Health and Longevity Science, University of California, La Jolla, California, USA.ORCID 0000-0003-1315-8387
University of California San Diego · USUniversity of Oklahoma Health Sciences Center · USHuman Longevity (United States) · USVA San Diego Healthcare System · US

Funding

The Strong Heart Study, Phase VU01HL041654 · NHLBI · UNIVERSITY OF OKLAHOMA HLTH SCIENCES CTR · PI LEE, ELISA TAN · 1988 to 2013
$19.2M
STRONG HEART STUDY (SHS): OUHSC COORDINATING CENTER - TASK AREA B (B.1 AND B.3)75N92019D00027 · NHLBI · UNIVERSITY OF OKLAHOMA HLTH SCIENCES CTR · PI ZHANG, YING · 2019 to 2025
$15.5M
CARDIOVASCULAR DISEASE IN THE PIMA INDIANSU01HL041642 · NHLBI · MEDSTAR RESEARCH INSTITUTE · PI HOWARD, BARBARA V · 1988 to 2013
$12.6M
STRONG HEART FAMILY STUDYU01HL065520 · NHLBI · TEXAS BIOMEDICAL RESEARCH INSTITUTE · PI COLE, SHELLEY A · 2000 to 2011
$8.9M
CARDIOVASCULAR DISEASE IN SIOUX INDIANSU01HL041652 · NHLBI · U.S. PHS INDIAN HEALTH SERVICE · PI BEST, LYLE G · 1988 to 2013
$7.9M
STRONG HEART STUDY (SHS)-MISSOURI BREAKS INDUSTRIES RESEARCH, INC.- FIELD CENTER (FC) TASK AREA B (B.1 AND B.3)75N92019D00029 · NHLBI · MISSOURI BREAKS RESEARCH, INC. · PI FRETTS, AMANDA MAE · 2019 to 2025
$7.5M
Protecting Privacy and Facilitating Shared Access of Clinical and Genetic Data of Special PopulationsR01HL136835 · NHLBI · YALE UNIVERSITY · PI OHNO-MACHADO, LUCILA · 2018 to 2022
$6.5M
STRONG HEART STUDY (SHS)- UNIVERSITY OF OKLAHOMA-FIELD CENTER (FC), TASK AREA B.3, YEAR 375N92019D00028 · NHLBI · UNIVERSITY OF OKLAHOMA HLTH SCIENCES CTR · PI ALI, TAUQEER · 2019 to 2025
$6.5M
STRONG HEART STUDY (SHS)- MEDSTAR HEALTH RESEARCH INSTITUTE (MHRI) FIELD CENTER -SUBTASK AREA B.2 PHASE VII EXAM AND EXAM CLOSEOUT.75N92019D00030 · NHLBI · MEDSTAR HEALTH RESEARCH INSTITUTE · PI UMANS, JASON G · 2019 to 2025
$5.2M
CVD in American Indians Study and Data Management Center and OK Field CenterR01HL109284 · NHLBI · UNIVERSITY OF OKLAHOMA HLTH SCIENCES CTR · PI STONER, JULIE A · 2013 to 2018
$4.6M
CARDIOVASCULAR EVALUATION--STRONG HEART STUDY PHASE IVU01HL065521 · NHLBI · WEILL MEDICAL COLL OF CORNELL UNIV · PI DEVEREUX, RICHARD B · 2000 to 2013
$4.3M
CVD in American Indians Biomarker lab and Arizona Field CenterR01HL109319 · NHLBI · MEDSTAR HEALTH RESEARCH INSTITUTE · PI UMANS, JASON G · 2013 to 2017
$3.6M
HHS 75N92019D00027NHGRI NIH HHS R01 HG008753NHLBI NIH HHS 75N92019D00027NHLBI NIH HHS 75N92019D00028NHLBI NIH HHS 75N92019D00029NHLBI NIH HHS 75N92019D00030NHLBI NIH HHS R01 HL109282NHLBI NIH HHS R01 HL109284NHLBI NIH HHS R01 HL109301NHLBI NIH HHS R01 HL109315NHLBI NIH HHS R01 HL109319NHLBI NIH HHS R01 HL136835NHLBI NIH HHS U01 HL041642NHLBI NIH HHS U01 HL041652NHLBI NIH HHS U01 HL041654NHLBI NIH HHS U01 HL065520NHLBI NIH HHS U01 HL065521NIH HHS R01 HL136835
6 · The paper itself

Abstract

Broad health data sharing raises myriad ethical issues related to data protection and privacy. These issues are of particular relevance to Native Americans, who reserve distinct individual and collective rights to control data about their communities. We sought to gather input from tribal community leaders on how best to understand health data privacy and sharing preferences in this population. We conducted a workshop with 14 tribal leaders connected to the Strong Heart Study to codesign a research study to assess preferences concerning health data privacy for biomedical research. Workshop participants provided specific recommendations regarding who should be consulted, what questions should be posed, and what methods should be used, underscoring the importance of relationship-building between researchers and tribal communities. Biomedical researchers and informaticians who collect and analyze health information from Native communities have a unique responsibility to safeguard these data in ways that align to the preferences of specific communities.

Indexed as

Biomedical ResearchIndians, North AmericanAmerican Indian or Alaska NativeCommunity-Based Participatory ResearchHumansInformation DisseminationPrivacycommunity-based participatory research (CBPR)health information privacyindigenous populationstribal consultation

Identifiers

PMID35349678
PMCPMC9093024
OpenAlexW4220843937

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

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.