Evidence map›Paper›PMID 37113255›Full record

ArticleDigital health

Sensing the (digital) pulse. Future steps for improving the secondary use of data for research in Switzerland.

Andrea Martani, Lester Darryl Geneviève, Tenzin Wangmo, Julia Maurer, Katrin Crameri, Frédéric Erard, Julia Spoendlin, Christiane Pauli-Magnus, Valerie Pittet, Thierry Sengstag and 6 more

Abstract read
In one paragraph

Article in Digital health. 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

16 authors.

Andrea MartaniInstitute for Biomedical Ethics, University of Basel, Basel, Switzerland.ORCID https://orcid.org/0000-0003-2113-1002
Lester Darryl GenevièveInstitute for Biomedical Ethics, University of Basel, Basel, Switzerland.
Tenzin WangmoInstitute for Biomedical Ethics, University of Basel, Basel, Switzerland.
Julia MaurerPersonalized Health Informatics Group, SIB Swiss Institute of Bioinformatics, Basel, Switzerland.
Katrin CrameriPersonalized Health Informatics Group, SIB Swiss Institute of Bioinformatics, Basel, Switzerland.
Frédéric ErardLegal & Technology Transfer, Swiss Institute of Bioinformatics (SIB), Lausanne, Switzerland.
Julia SpoendlinBasel Pharmacoepidemiology Unit, Division of Clinical Pharmacy and Epidemiology, Department of Pharmaceutical Sciences, University of Basel, Basel, Switzerland.
Christiane Pauli-MagnusClinical Trial Unit, Department of Clinical Research, University of Basel and University Hospital Basel, Basel, Switzerland.
Valerie PittetCenter for Primary Care and Public Health, Department of Epidemiology and Health Systems, University of Lausanne, Lausanne, Switzerland.
Thierry SengstagsciCORE, University of Basel, Basel, Switzerland.
Emiliano SoldiniCompetence Centre for Healthcare Practices and Policies, Department of Business Economics, Health and Social Care, University of Applied Sciences and Arts of Southern Switzerland, Manno, Switzerland.
Bernard HirschelCantonal Ethics Commission for Research on Human Beings, Geneva, Switzerland.
Bettina BorischInstitute of Global Health, University of Geneva, Geneva, Switzerland.
Cornelia Kruschel WeberIndependent Researcher, Zürich, Switzerland.
Marcel ZwahlenInstitute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.ORCID https://orcid.org/0000-0002-6772-6346
Bernice Simone ElgerInstitute for Biomedical Ethics, University of Basel, Basel, Switzerland.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: Ensuring that the health data infrastructure and governance permits an efficient secondary use of data for research is a policy priority for many countries. Switzerland is no exception and many initiatives have been launched to improve its health data landscape. The country now stands at an important crossroad, debating the right way forward. We aimed to explore which specific elements of data governance can facilitate - from ethico-legal and socio-cultural perspectives - the sharing and reuse of data for research purposes in Switzerland. Methods: A modified Delphi methodology was used to collect and structure input from a panel of experts via successive rounds of mediated interaction on the topic of health data governance in Switzerland. Results: First, we suggested techniques to facilitate data sharing practices, especially when data are shared between researchers or from healthcare institutions to researchers. Second, we identified ways to improve the interaction between data protection law and the reuse of data for research, and the ways of implementing informed consent in this context. Third, we put forth ideas on policy changes, such as the steps necessary to improve coordination between different actors of the data landscape and to win the defensive and risk-adverse attitudes widespread when it comes to health data. Conclusions: After having engaged with these topics, we highlighted the importance of focusing on non-technical aspects to improve the data-readiness of a country (e.g., attitudes of stakeholders involved) and of having a pro-active debate between the different institutional actors, ethico-legal experts and society at large.

Indexed as

digital healthELSIHealth data policyhealth informaticssecondary use of dataSwitzerland

Identifiers

PMID37113255
PMCPMC10126638

What OpenQuestion holds

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LicenceCC BY
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.