DOI: 10.5281/zenodo.18758353
title: Dataset of :"General consent: an observational and patient inclusive approach to explore different information strategies"

description: # In version 2: The datadictionary has been updated, broad consent has been changed into general consent.

Data set of this article:

Table 1: Retrospective_administrative_Data

Data collected from December 2012 to April 2022, extracted from 3 existing institutional administrative databases by the CHUV IT division team. The file consists of retrospective administrative data from 204.004 adult patients informed about General Consent

Table 2 and 3: Prospective_Questionnaire_V1_data and Prospective_Questionnaire_V2_data

Data obtained from 2.445 anonymized questionnaires. Data from the paper questionnaires were manually entered into an electronic REDCap database. The questionnaire was anonymous

Table 4: Patient_Communications_Data

Data obtained via hotline phone calls, e-mails and patient letters received at the RCU during the period from May 15, 2020, to March 7, 2023, were analyzed – a total of 4.737 patients’ communications

 
description: Data Sharing Requests and Procedures

Researchers interested in accessing data can request the necessary Data Transfer and Use Agreement (DTUA), via the Principal Investigator. Upon request, the scientific committee will evaluate the application. If accepted, the data will be extracted from the Horus CHUV Dataset Catalog at DSI-CHUV, under the supervision of the Principal Investigator.


Requirements for Data Access

Researchers who wish to analyze, reproduce, or gain further insights from the data must submit a request for de-identified patient-level data to heads of the current project. Requests must clearly justify the use of the data and specify the required variables. External users or collaborators should demonstrate a proven track record in the field, provide a detailed research protocol, and explain how they will handle the data ethically and scientifically.

The protocol should include:



    
Collaborators and their affiliations
    
Potential conflicts of interest
    
Project funding details
    
Inclusion/exclusion criteria
    
Scientific questions to be addressed
    
Detailed analysis plan
    
Peer-reviewed publication in the field



Approval Process

The heads of the current project will review the application, recommending any necessary protocol adjustments to enhance quality and ensure alignment with project objectives. Before the data is released, both parties will sign the Data Transfer and Use Agreement (DTUA) based on the Swiss Personalized Health Network (SPHN) template. This agreement will define responsibilities related to data protection, management, authorship (in accordance with international standards), and the proper citation of sources and funding. Additionally, it will specify the required date for secure data destruction after analysis is completed, with confirmation of destruction submitted to the project leads.



To get access to the dataset, please contact the following emails:





cindy.allenbach@chuv.ch (cc: dsbu@unil.ch)
description: CHUV

Contact email for dataset:

cindy.allenbach@chuv.ch