Evidence map›Paper›PMID 31245582›Full record

ArticleLearning health systems2018

Pediatric oncology as a Learning Health System: Ethical implications for best available treatment protocols.

Rieke van der Graaf, Sara A Dekking, Martine C de Vries, Christian Michel Zwaan, Johannes J M van Delden

Abstract read
In one paragraph

Article in Learning health systems, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing 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

5 citing papers in PubMed.

  1. Article
  2. Review
  3. Review
  4. Article
  5. 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

5 authors.

Rieke van der GraafDepartment of Medical Humanities University Medical Center Utrecht Julius Center Utrecht The Netherlands.ORCID 0000-0003-4907-7044
Sara A DekkingEthics Division Department of Public Health Ministry of Health, Welfare and Sport The Hague The Netherlands.ORCID 0000-0002-1059-8128
Martine C de VriesDepartment of Medical Ethics and Health Law Leiden University Medical Center Leiden The Netherlands.ORCID 0000-0002-3178-7470
Christian Michel ZwaanDepartment of Paediatric Oncology Erasmus MC-Sophia Children's Hospital Rotterdam The Netherlands.ORCID 0000-0002-1353-9166
Johannes J M van DeldenDepartment of Medical Humanities University Medical Center Utrecht Julius Center Utrecht The Netherlands.ORCID 0000-0002-5530-7275

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionPediatric oncology is often considered as a field in which research and care are highly integrated. We believe that this integration can be seen as a so-called Learning Health System, a system in which research is considered an important means to continuously improve the practice of care. In order to substantiate our assumption of pediatric oncology as an LHS, we will analyze so-called "best available treatment protocols." These protocols always contain research elements, even if themain goal of these protocols is to treat children diagnosed with cancer.

methodsWe will analyze the implications for ethical review and informed consent if these protocols had to function as exponents of pediatric oncology an LHS.

resultsAn analysis of best available treatment protocols teaches us how these protocols integrate care and research and how these protocols can be seen as exponents of a system where care and research need no longer be sharply distinct practices. DISCUSSION: Further intervention in the field of pediatric oncology is essential to also meet the requirements for an ethically responsible LHS.

conclusionBest available treatment protocols, which combine research and care, can be seen as examples of pediatric oncology as an LHS. However, in order to prevent that research elements in these protocols will be overlooked, we will have to find new ways to accommodate for the oversight of these protocols, such as multifaceted review and risk-adapted approaches. Moreover, informed consent process must be changed in order for patients to understand how care and research are integrated in these protocols.

Indexed as

ethicsLearning Health Systemspediatric oncology

Identifiers

PMID31245582
PMCPMC6508761

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.