Information for users of the Specchio-Hub digital platform

1. CONSENT

Your participation is voluntary: you are free to accept or refuse to use the Specchio-Hub digital platform. If you decide to participate, please note that you may withdraw your consent at any time, without incurring any liability or prejudice. We will simply ask you to inform us. You will not have to justify your decision.

2. PRESENTATION OF THE SPECCHIO-HUB PLATFORM

Specchio-Hub is a secure digital platform designed to collect data from volunteers involved in health research. It is accessible to adults taking part in one or more studies conducted by the UEP (Specchio, Bus Santé, SEROCoV-Schools, SEROCoV-KIDS, Specchio-COVID19 and other studies to come).

People connected to Specchio-Hub are invited to fill in a series of questionnaires independently online (see section 4. Procedure). The data collected for all participants will enable us to carry out statistical analyses of various health issues. The digital platform gives participants access to a secure personal space where they can find the questionnaires to be completed and the results of any biological tests they may have undergone (to date, only for the Bus Santé study and the seroprevalence studies).

Thanks to the Specchio-Hub platform, participants have direct access to the results and progress of the various studies in which they are taking part. News" and "Research" pages are specifically dedicated to them. Thanks to a ticketing system and a contact form, participants benefit from a direct link with the scientists in charge of the studies and the platform.

3. DURATION

You may use the platform for as long as is necessary to participate in one or more studies conducted by the UEP. As stated above, you may withdraw at any time, without giving us any explanation. However, we are counting on your participation for as long as possible, so that our research is as fruitful as possible.

4. PROCEDURE

To register on the platform, you need Internet access and a personal e-mail address. When you register online, you will be asked to enter your first name, surname and email address and to define your password. You will then receive a confirmation email containing a link which you will need to click in order to definitively validate the creation of your account. On this platform, you will have a secure personal area to which you can log in using your password.

• When you log in for the first time, you will be asked to complete an initial questionnaire designed to gather general information about your state of health, your socio-economic situation and your lifestyle habits (such as your diet or physical activity, for example).
• Once you have completed this initial questionnaire, other questionnaires will be offered to you depending on the study you are taking part in.
• Where applicable, the results of any biological tests carried out as part of the study you are taking part in will be sent directly to you in your personal, secure area on the platform. You will receive an e-mail indicating the availability of your results on the platform.

5. CONSTRAINTS AND RISKS

No medication is prescribed for our studies. Blood sampling (if you are invited to have a serological blood test or a health check-up) may cause a small haematoma at the puncture site, as well as slight pain.

Your participation is entirely free of charge. The costs of visits and examinations requested specifically for the study in which you are taking part are borne by us. The HUG's civil liability insurance covers any damage resulting from your participation in the study, in the event of liability.

6. SERVICES PROVIDED TO PARTICIPANTS

By using the Specchio-Hub platform, you are joining a community of people committed to improving knowledge in the field of health. The main benefit is above all for society as a whole. On an individual basis:

• You will have access to a range of scientific information and links to reliable information sites in the field of health and medical research.
• Depending on the study in which you are taking part, you will have access to the results of biological tests carried out according to the needs of the study (see section 4. Procedure).

There is no financial compensation for participants in studies conducted via the platform.

7. OPERATION OF THE SPECCHIO-HUB PLATFORM

7.1 Confidentiality and processing of computerised data

All questionnaires must be completed directly on the platform, using an ergonomic web interface.

The collection and processing of personal data and sensitive personal data via the platform has been authorised by the relevant Ethics Committee (CCER).

We process the following data via the platform:

I. Data from the initial questionnaire: postcode of your home and workplace, data on your lifestyle, family composition, professional situation and income, state of health and other demographic and medical data.

II. Answers to the suggested questionnaires (see section 4. Procedure).

III. Results of your biological tests, if any.

IV. When you send us an e-mail or other communication via the contact form, we record and store these communications in order to respond to you as quickly as possible.

V. When we send you email campaigns, we record your actions relating to the opening and reading of these emails, in order to optimise our communication with you. We do not pass this information on to third parties.

7.2 Technical and organisational safeguards to protect your data

Appropriate protection measures have been put in place to guarantee the security of your data and to meet the requirements of the various applicable laws, those of the Cantonal Research Ethics Committee (CCER) and those of the HUG.

Data collected for research purposes is coded (i.e. without mention of first and last names or other information enabling you to be identified) as soon as it is collected. Encrypted data is managed and processed in a highly secure data centre in Switzerland; under no circumstances is it stored on the Internet. This also applies to the return of your biological results where applicable; the PDF file that you find in your personal space on the Specchio-Hub platform is generated when you click on the link, and is never hosted online.

Only authorised personnel can access the physical location of the servers and access to the data is strictly controlled. All identification data (in particular your e-mail address, surname, first name and date of birth) is managed separately from data from questionnaires and biological test results. Only specifically authorised administrators have access to all data. Personal identification data is only accessible to staff responsible for booking appointments for biological tests and for transmitting communications required for the study. These people do not have access to sensitive personal data. Sensitive personal data is only accessible to research and scientific investigation staff. These people do not have access to personal identification data.

7.3 Data sharing policies

Data may be shared in encrypted form (i.e. without mention of first and last names or other identifying information) with UEP researchers.

Coded data (from questionnaires and biological tests) may be transmitted to other entities carrying out scientific research or statistical analysis as part of scientific partnerships in Switzerland or abroad, provided that they comply with standards and requirements that are at least equivalent to Swiss standards and requirements.

The results of statistical analyses may only be used for scientific or public health purposes. The publication of the results of statistical analyses does not include any individual results.

Under no circumstances will your personal details be passed on to third parties.

7.4 Data storage

Data will be stored in coded form (a code replaces surnames and forenames and any other identifying information) for a period of 50 years in a database, archived on a secure server within the HUG. The code is kept separately in a database, archived on a secure server within the HUG.

7.5 Confidentiality policy for cookies

The digital platform uses cookies. These are small text files which enable specific information relating to the user to be recorded on the user's device while he is using the website without this data being directly linked to his person. Cookies make it possible, in particular, to determine the frequency of use and the number of users of pages, to analyse page usage behaviour and to make our platform more user-friendly. Cookies do not allow sensitive data and/or data relating to your health to be recorded. Cookies remain stored at the end of a browsing session and can be recalled when you visit the site again. If you do not wish this, you must configure your Internet browser to refuse cookies.

7.6 Site content

The HUG Service of Primary Care Medicine makes every effort to ensure to the best of its ability that the information published on the site is accurate and up to date at the time of publication. specchio-hub.ch.

8. WITHDRAWAL OF PARTICIPATION

You may withdraw your participation at any time if you wish. You can request the destruction of your data and samples by contacting our research team by e-mail at the following address info@specchio-hub.ch. Please note that results from coded data that have already been analysed will be retained.