Evidence map›Paper›PMID 41514306›Full record

ArticleBMC medical ethics2026

Implementing broad consent for research with routinely collected clinical data and residual biosamples in a cancer hospital: using mixed methods approach to evaluate consent rates and patients' perspectives.

Miriam Beusink, Susanne Rebers, Annegien Broeks, Irith Kist, Henri van Luenen, Aaike van Oord, Sonja van Scheijen, Marjanka K Schmidt

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In one paragraph

Article in BMC medical ethics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

8 authors.

Miriam BeusinkDivision of Molecular Pathology, The Netherlands Cancer Institute, PO box 90203, Amsterdam, 1006 BE, The Netherlands.
Susanne RebersDivision of Molecular Pathology, The Netherlands Cancer Institute, PO box 90203, Amsterdam, 1006 BE, The Netherlands.
Annegien BroeksCore Facility Molecular Pathology and Biobanking, The Netherlands Cancer Institute, PO box 90203, Amsterdam, 1006 BE, The Netherlands.
Irith KistBoard of Directors Administration and Legal Department, The Netherlands Cancer Institute, PO box 90203, Amsterdam, 1006 BE, The Netherlands.
Henri van LuenenResearch - Cluster management, The Netherlands Cancer Institute, PO box 90203, Amsterdam, 1006 BE, The Netherlands.
Aaike van OordDivision of Molecular Pathology, The Netherlands Cancer Institute, PO box 90203, Amsterdam, 1006 BE, The Netherlands.
Sonja van ScheijenDivision of Molecular Pathology, The Netherlands Cancer Institute, PO box 90203, Amsterdam, 1006 BE, The Netherlands.
Marjanka K SchmidtDivision of Molecular Pathology, The Netherlands Cancer Institute, PO box 90203, Amsterdam, 1006 BE, The Netherlands. mk.schmidt@nki.nl.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPatients are generally willing to contribute to research with routinely collected health data and residual biosamples, but transparency and being able to (to some extent) have control over data are important conditions. A broad consent procedure ensures that patients are informed, without overloading the patients with too many or repeated study-specific consents. In the context of implementation of broad consent, we investigated five aspects: response rates, whether patients felt informed and were able to reach a decision, whether the registered consent was in line with their desired consent, reasons for giving (no) consent or not responding, and suggestions to improve the procedure.

methodsWe analyzed consent decisions of 31,894 patients, recorded between May 2018 and December 2020 in a specialized cancer hospital. We also interviewed 64 patients selected from first-time visiting patients between October and November 2018 (25 with consent, 16 with no consent and 23 with no response).

resultsConsent rates were: 85.2% consented, 3.8% did not consent and 11% did not respond. The majority of the interviewees, who recalled that consent was asked, felt sufficiently informed. Those that needed more information, mostly had not (yet) read the information given to them, due to the hectic and emotional period. For the majority of our interviewees the desired consent decision matched with what was registered in the hospitals’ system. Reasons for giving consent were mostly motivational, e.g., altruism and solidarity. Reasons for not giving consent or not responding yet were mostly contextual, e.g., insufficient headspace and needing more time. Privacy concerns, e.g. mistakes resulting in data being publicly accessible, data linkage and hacking, were mentioned as well. Sometimes the reason to not give consent or not respond was based on misunderstanding, e.g. that consenting would require bureaucratic entanglements.

conclusionsFor high quality research with patient data and samples, broad consent from a large and representative patient population is essential, and patients must feel informed and be able to register their consent decision easily. Our novel consent procedure led to an 85.2% consent rate and desired consent decisions were mostly registered correctly. In addition, patients felt sufficiently informed.

Indexed as

Biological Specimen BanksBiomedical ResearchCancer Care FacilitiesInformed ConsentAdultAgedData CollectionDecision MakingFemaleHumansMaleMiddle AgedNeoplasmsBroad consentElectronic health recordsImplementation in practicePatient informationReal-world dataResponse rateRoutine health dataSecondary data useTransparency

Identifiers

PMID41514306
PMCPMC12918062

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LicenceCC BY-NC-ND
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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.