Information Note / KnowDrugs Impact Study

Promoted by the association Ithaque, located at 12 rue Kuhn, 67000 Strasbourg, coordinated by Julien Anthouard (Ithaque), Philipp Kreicarek (KnowDrugs), both principal investigators of the research.

This document provides information on the terms of this research project. If there is any information that you do not understand, do not hesitate to contact us at the following email address: [email protected]

This research received the favourable opinion of the Committee for the Protection of Persons and the National Agency for the Safety of Medicines and Health Products (ANSM) has been informed.

It is subject to the provisions of articles L 1111-7 and following, L1121-1 and following as well as the provisions of articles R 1121-1 and following of the Public Health Code.

You are free to participate or not in this research. In order to inform your decision, you must have received and fully understood the following information.

What is the purpose of this research?

The KnowDrugs Impact Study is a joint collaboration between KnowDrugs and ITAQUE with the following objectives:

  1. Assess the effectiveness of the KnowDrugs app (integrated drug-checking results with substance info, safer use info and counselling organisations) in promoting harm-reduction practices amongst its users.
  2. Identify any potential correlation with the frequency of app use, type of content consumed in the app and exposure to harm-reduction content through other channels.
  3. Assess the effectiveness of the emergency information presented in the app

The KnowDrugs Impact Study is carried out via a fully anonymous online survey. Participation is fully voluntary and answering certain questions which ask for sensitive personal information such as age or gender is furthermore optional.

How will the research take place?

The KnowDrugs Impact Study is carried out via a fully anonymous online survey. Participation is fully voluntary and answering certain questions which ask for sensitive personal information such as age or gender is furthermore optional.

What does my participation in this research consist of?

Participants in the quantitative part of the study fill out an online survey which is fully anonymous and does not collect any personally identifiable information.

What happens at the end of my participation or in the event of premature termination?

If you close the questionnaire before having clicked on “Submit”, none of your answers will be recorded. Your submission will only be recorded if you click “Submit” at the end of the survey.

Is compensation provided for my participation in this study?

 There is no compensation for participating in this study.

What are the expected benefits, constraints, and risks of participating in this research?

With your participation in the study, you are helping us to better understand how people are using the KnowDrugs app and whether the app is effective in promoting knowledge and harm-reduction behavior amongst people who take drugs.

There is no risk involved in participating in this study. All information collected via the online survey is anonymous. 

 

What happens to my information?

Your answers to the questions presented in the online survey will be statistically analyzed to answer the study’s research questions. Individual answers to the questionnaire will never be published. Only aggregated data in the form of a study report will be published online.

 

Purpose of processing your information

The Ithaque association, represented by its acting legal representative, is the promoter of the research and responsible for data processing.

A computerized processing of your personal data will be implemented to allow the analysis of the results of the research with regard to the objective of the latter which has been presented to you.

The legal basis on which the processing of your data is based is the performance of a public interest task entrusted to the controller.

This study complies with a reference methodology (MR) MR-003 established by the CNIL.

Type of recorded data 

Answers to the questions presented in the online questionnaire. This also involves questions about the usage of legal and or illegal drugs. However, no personally identifiable information is collected with the survey.

The survey platform Typeforms collects the IP address of every person who enters the online survey (regardless of whether they complete it or not) for the purpose of preventing fraud. IP addresses are always stored separately from potential survey submissions. Therefore it is impossible to identify individuals who have participated in the survey. You can find the privacy policy of Typeform here.

Data sources

Your answers to the online survey.

Data recipients

The anonymized data collected during this research may be transmitted, in compliance with medical secrecy, to the representative of the research sponsor and the health authorities for the purpose of compliance control.

None of your data will be transferred outside the European Union.

Reuse of your data

The data collected for this study will solely be used for generating a research report according to the objectives of this study. The data will not be used for any other type of study.

Data retention period

Your anonymized personal data will be kept for up to one year after the last publication of the research results.

They will then be archived on computer media for a period of 15 years in accordance with the regulations in force.

Rights of persons

In accordance with the General Data Protection Regulation (GDPR), you have a right to access your personal data as well as a right to rectify them, oppose the processing of data, limit the processing of your personal data or request your data to be deleted.

Since no personally identifiable information is collected as part of the online questionnaire, once submitted, data can not be edited or deleted based on individual requests, since it is impossible to identify individual users in the data set.

For any information relating to the protection of your data, you can contact us at the address [email protected] and/or contact the data protection officer of the Ithaque association by writing to [email protected] or at the following mailing address:

Ressourcial
19 rue Marius Grosso
69120 Vaulx-en-Velin

If you believe that your rights are not respected or that the access control system does not comply with data protection rules, you can file a complaint with the National Commission for Computing and Liberties from the site CNIL website https://www.cnil.fr/fr/plaintes or by post to the following address:

National Commission for Computing and Liberties (CNIL)
3 Place de Fontenoy,
TSA 80715
75334 PARIS CEDEX 07

 

How can I exercise my rights?

You can exercise your rights at any time without having to justify yourself. However, since participation in the survey is anonymous and no personally identifiable information is collected, once submitted, data can not be edited or deleted.   

If you do not want the data collected to be used, please do not participate in the study / do not fill out the online survey. 

 

What happens if I no longer wish to participate in this research?

Your participation in this research is free. You have the right to refuse to participate in the study. Once data has been submitted as part of the anonymous online survey, it can not be edited or deleted, since individual submissions can not be identified in the dataset.