Evidence map›Paper›PMID 25829461›Full record

ArticleJournal of the American Medical Informatics Association : JAMIA2015

Comparison of consumers' views on electronic data sharing for healthcare and research.

Katherine K Kim, Jill G Joseph, Lucila Ohno-Machado

Open access · bronzeAbstract readComparative Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of the American Medical Informatics Association : JAMIA, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 65 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
65citing papers in PubMed, 4 pooled it
20.1field-weighted citation impact, top 1% 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.

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

65 citing papers in PubMed, 4 syntheses or guidelines pooled it, 147 citations in OpenAlex.

  1. Pooled it
  2. Pooled it
  3. Pooled it
  4. Pooled it
  5. Article
  6. Article
  7. Article
  8. Article
  9. Article
  10. Article
  11. Article
  12. Article
  13. Article
  14. Article
  15. Article
  16. Article
  17. Article
  18. Article
  19. Article
  20. Article

5 more citing papers are in PubMed but not listed here.

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

3 authors at 3 institutions in 1 country.

Katherine K KimBetty Irene Moore School of Nursing, University of California Davis, Sacramento, CA 95817 USA kathykim@ucdavis.edu.
Jill G JosephBetty Irene Moore School of Nursing, University of California Davis, Sacramento, CA, USA.
Lucila Ohno-MachadoDivision of Biomedical Informatics, Department of Medicine and Clinical Translational Research Institute, University of, California San Diego, San Diego, CA, USA.
UC Davis Health System · USUniversity of California, Davis · USUniversity of California, San Diego · US

Funding

iDASH: Integrating Data for Analysis, Anonymization, and SharingU54HL108460 · NHLBI · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI OHNO-MACHADO, LUCILA · 2010 to 2015
$19.1M
SCANNER: Scalable National Network for Effectiveness ResearchR01HS019913 · AHRQ · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI OHNO-MACHADO, LUCILA · 2010 to 2010
$8.3M
AHRQ HHS R01 HS019913AHRQ HHS R01HS019913NHLBI NIH HHS U54 HL108460NHLBI NIH HHS U54HL108460
6 · The paper itself

Abstract

unlabelledNew models of healthcare delivery such as accountable care organizations and patient-centered medical homes seek to improve quality, access, and cost. They rely on a robust, secure technology infrastructure provided by health information exchanges (HIEs) and distributed research networks and the willingness of patients to share their data. There are few large, in-depth studies of US consumers' views on privacy, security, and consent in electronic data sharing for healthcare and research together.

objectiveThis paper addresses this gap, reporting on a survey which asks about California consumers' views of data sharing for healthcare and research together. MATERIALS AND

methodsThe survey conducted was a representative, random-digit dial telephone survey of 800 Californians, performed in Spanish and English.

resultsThere is a great deal of concern that HIEs will worsen privacy (40.3%) and security (42.5%). Consumers are in favor of electronic data sharing but elements of transparency are important: individual control, who has access, and the purpose for use of data. Respondents were more likely to agree to share deidentified information for research than to share identified information for healthcare (76.2% vs 57.3%, p < .001). DISCUSSION: While consumers show willingness to share health information electronically, they value individual control and privacy. Responsiveness to these needs, rather than mere reliance on Health Insurance Portability and Accountability Act (HIPAA), may improve support of data networks.

conclusionResponsiveness to the public's concerns regarding their health information is a pre-requisite for patient-centeredness. This is one of the first in-depth studies of attitudes about electronic data sharing that compares attitudes of the same individual towards healthcare and research.

Indexed as

ConfidentialityElectronic Health RecordsHealth Information ExchangeInformation DisseminationPublic OpinionAttitude to HealthCaliforniaComputer SecurityHumansSurveys and Questionnairesconsentdistributed research networkhealth information exchangepatient-centeredprivacy

Identifiers

PMID25829461
PMCPMC5009901
OpenAlexW2176268810

What OpenQuestion holds

Textmetadata
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.