About Colive Cancer
What is the Colive Cancer study all about?
Colive Cancer is a national survey collecting data on the experience of people who have been treated for cancer in Luxembourg.
What is the purpose of the Colive Cancer study?
The main objective of this study is to evaluate the current cancer care system in Luxembourg, thus enabling its future improvement.
Who is in charge of the Colive Cancer study?
The Colive Cancer study is conducted as part of the second National Cancer Plan in Luxembourg and supported by the Ministry of Health. It is carried out by the LIH.
What data will be collected?
Questions will focus on different aspects of disease management:
• Socio-demographic data of the patient,
• Data on the disease: features and treatments,
• Experience of the clinical journey: diagnosis, treatment, care, care and support, and post-cancer,
• Experience and quality of care perceived by the patient.
How is data collected?
The data is collected from a questionnaire distributed only online, via the Colive application.
The questionnaire is in the form of a chat, for each question the respondent can chose one of several possible answers.
Who can participate?
This study is open to all adults (above 18) who have been treated (partially or totally) for cancer in Luxembourg (resident or non-resident), since 01/01/2018.
Is my participation remunerated?
Your participation in this study is voluntary. You will not receive any remuneration for your participation.
When will the results be published?
The study was launched in December 2022, and recruitment is open for a period of 1 year (December 2023).
The final results can only be published after this date, but preliminary results and progress will be made available at regular intervals, in particular on the website.
Questions about the questionnaire to be completed
I’m having trouble with the Colive app
If you have any problems with the Colive application, we invite you to contact us by email (colivecancer@lih.lu), we will get back to you as soon as possible.
We remind you that access to your microphone is required to access the questionnaire in order to make the optional voice recordings, whether you choose to make them or not. You can change this permission in your browser settings or by logging into your Colive account from another phone, computer or tablet.
Could I receive a paper version of the questionnaire?
This survey and its questionnaire are only available online. This allows you to complete it whenever and wherever you want, directly from your smartphone, tablet or computer.
How long does it take to complete the questionnaire?
On average, it should take you 20 to 40 minutes to complete the questionnaire. This time may vary, because depending on your profile (personal characteristics, characteristics of the disease, characteristics of the care provided) not all questions will necessarily be asked.
Can I take a break while I complete the online survey ?
If possible, it is preferable to complete the whole questionnaire in one go, at a given moment in time. If of course you feel the need to take a break in between, your answers to the questions are saved between each module of the questionnaire (7 modules in total, maximum) and you will be notified of this backup. As soon as you decide to resume the filling out the questionnaire, go back to your Colive account and you can pick up where you left off.
Do I have to answer all the questions?
Your participation in this study is voluntary, so you are not required to answer all questions. However, for the proper conduct of the survey and to allow data analysis, it is preferable that the questionnaire be complete.
Can I complete the survey in other languages?
The survey is available in German, English, French or Portuguese. By default, it will be offered in the language used by your browser. You will be able to change this setting from the Colive app.
Can someone help me fill out the questionnaire?
If you have the opportunity, you can of course get help, being careful to always formulate your answers taking into account your own personal experience.
I lost my Colive password. Can I get it back?
A recovery code may be sent to the email address provided when creating your Colive Account.
Privacy and data protection
I am a Colive Cancer participant, what are my rights?
You have the right to access and rectify your personal data. Under the conditions set by law, you have the additional rights to object to the way your data is used, to request the deletion of your data and to request the restriction of certain aspects of the processing of your data. If you wish to exercise your rights, you can contact the study team by email.
Finally, you have the right to lodge a complaint with the National Commission for Data Protection (CNPD) regarding the processing of your personal data.
If you have any queries regarding the processing of your personal data by the LIH, you can contact the LIH’s Data Protection Officer by e-mail at dpo@lih.lu or by post at the address:
LUXEMBOURG INSTITUTE OF HEALTH
Data Protection
1A-B, rue Thomas Edison
L-1445 Strassen
LUXEMBOURG
What will happen to my answers?
Your responses will be aggregated with those of other participants and will not be linked to your name, address or any other personal identifier, which remain confidential and separate from responses. The answers you give to this survey will only be used for the analysis of the results and you will not be identifiable in the published reports.
PNC2 will publish results from the survey. Public data will be anonymized and aggregated. No one will be able to identify you in the results that will be published.
How is my data protected?
All personal information will be kept confidential by the IHL. No one will be able to identify you in the published results. LIH will securely delete your personal data from its systems at the end of the study. For more information about your rights and access to your data, as well as their modification and deletion, see the full data protection notice [Informatives notices].
How long will my data be kept?
In accordance with applicable legal provisions, LIH will retain your responses for a period of 10 years after the completion of data collection for the study. Your contact information (identifiers) will be destroyed at the end of the study.
Do you have access to other of my (health) data?
We will only have access to the data you provide us when completing the questionnaire, and to the data of the IGSS and/or RNC, depending on your choice when signing the consent.
I didn’t find an answer to my question.
If you have any further questions or need help completing the questionnaire, please send an email to colivecancer@lih.lu.