Evidence map›Paper›PMID 27800531›Full record

ArticleAJOB empirical bioethics2016

Patients' Views Concerning Research on Medical Practices: Implications for Consent.

Kevin P Weinfurt, Juli M Bollinger, Kathleen M Brelsford, Travis J Crayton, Rachel J Topazian, Nancy E Kass, Laura M Beskow, Jeremy Sugarman

Abstract readMulticenter Study
PubMed Full text at PMC Publisher
In one paragraph

Article in AJOB empirical bioethics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.

0numbers the graph read from it
0cells of the map it votes in
16citing 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

16 citing papers in PubMed.

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  14. Physicians' perspectives regarding pragmatic clinical trials.Journal of comparative effectiveness research · 2016
    Article
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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.

Kevin P WeinfurtDuke Clinical Research Institute, Duke University School of Medicine, Durham, NC; Department of Psychiatry and Behavioral Sciences, Duke University School of Medicine, Durham, NC.
Juli M BollingerBerman Institute of Bioethics, Johns Hopkins University, Baltimore, MD.
Kathleen M BrelsfordDuke Clinical Research Institute, Duke University School of Medicine, Durham, NC.
Travis J CraytonDuke Clinical Research Institute, Duke University School of Medicine, Durham, NC.
Rachel J TopazianBerman Institute of Bioethics, Johns Hopkins University, Baltimore, MD.
Nancy E KassBerman Institute of Bioethics, Johns Hopkins University, Baltimore, MD; Department of Health Policy and Management, Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD.
Laura M BeskowDuke Clinical Research Institute, Duke University School of Medicine, Durham, NC; Department of Medicine, Duke University School of Medicine, Durham, NC.
Jeremy SugarmanBerman Institute of Bioethics, Johns Hopkins University, Baltimore, MD; Department of Health Policy and Management, Johns Hopkins University Bloomberg School of Public Health, Baltimore, MD; Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD.

Funding

Health Care Systems Research Collaboratory SupplementU54AT007748 · NCCIH · DUKE UNIVERSITY · PI CURTIS, LESLEY H, HERNANDEZ, ADRIAN · 2012 to 2017
$15.1M
NCCIH NIH HHS U54 AT007748
6 · The paper itself

Abstract

backgroundComparative effectiveness research (CER) and pragmatic clinical trials commonly test interventions that are in routine use and pose minimal incremental risk or burdens to patients who participate in this research. The objective of this study was to elicit the range of patients' views and opinions regarding a variety of different types of research on usual medical practices, especially notification and authorization for them.

methodsWe conducted twelve focus groups with adults in five U.S. cities-six focus groups addressing CER ("CER groups") and six groups addressing research involving hospital operations and clinician interventions ("Operations groups"). Participants discussed hypothetical research studies and potential methods of notifying patients and obtaining their authorization to participate. Group discussions were recorded, transcribed, and coded to identify patients' views related to research on standard medical practice.

resultsA total of ninety six people participated. Twelve key themes emerged from participants' discussions of the hypothetical research studies; these themes were then grouped into four general categories: clinical care; notification and authorization; communication; and conduct and design of research. The desire to be actively notified and asked was more prominent with regard to CER studies than with regard to Operations studies.

conclusionsOur data suggest that effective policy and guidance will involve balancing different patients' interests and potentially different sets of interests for different types of research studies on usual medical practices.

Indexed as

Patient ParticipationAdultAgedAged, 80 and overComparative Effectiveness ResearchFemaleFocus GroupsHumansInformed ConsentMaleMiddle AgedPatient SelectionPragmatic Clinical Trials as TopicQualitative ResearchResearch SubjectsUnited Statescomparative effectiveness researchethicsfocus groupspolicypragmatic clinical trialsresearch ethics

Identifiers

PMID27800531
PMCPMC5085261

What OpenQuestion holds

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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.