This document discloses the Data Privacy and Security Policy of the MAKE AWARE! civic engagement initiative and research developed by SUPSI within Subproject 3 of project SPEARHEAD. The Policy page is aimed to inform people taking part in the MAKEAWARE! activities about what information is collected, why it is collected, and how it can be updated, managed, exported, and deleted.

January 2023

Civic Engagement
SPEARHEAD Subproject 3

Thank you for participating in our research and collaboratively providing information and data to help understand and address antimicrobial resistance (AMR) in relation to urinary tract infection diseases (UTIs).
This Privacy Policy is intended to inform participants like you about what information is collected, why it is collected, and how it can be updated, managed, exported, and deleted. The goal of this experimental initiative is to collaborate and co-create useful data and resources for those interested in understanding antibiotic properties and consumption behaviour, as well as for those who may benefit from sharing practices and stories with others in similar circumstances (UTIs, AMR, etc.). To this end, data, information, and stories shared by users will be anonymized and made available as open datasets and visual aids. Our focus is on conducting open research that is guided by safety and ethical principles, and contributing to the fight against antimicrobial resistance and urinary tract infections through a collaborative approach involving non-expert individuals.

We do not collect any data or information from your navigation on this repository. For information on how data and information are gathered, please refer to the Data Privacy Policy of GitHub.

The SIGN IN form is designed to collect information about participants' backgrounds and previous knowledge of antimicrobial resistance (AMR) and urinary tract infections (UTIs). This data is used to improve the design of the workshop. Participants' names and email addresses are collected for the following purposes:
- to share practical information before the workshop;
- to collect feedback, stories, and resources after the workshop;
- to engage in future initiatives by MAKEAWARE! under the SPEARHEAD project.

The SIGN IN Form is built on MachForm software and is hosted on the SUPSI web server located in Switzerland. The form automatically collects the user's IP address. The forms are secured using HTTPS and data is encrypted using industry-standard AES-256 encryption. Data stored on MachForm will be kept for five years after the end of the project (2024) and then completely deleted. No external clouds such as Google Drive are used to store or share data. Anonymous data from this form will also be used to disseminate research results in the form of statistics or reports of activities. Personal data (email and name) will not be used for profiling or commercial or marketing purposes and will not be shared with third parties, including other project partners.

The EVALUATION form is addressed to participants of the workshop and is used to gather feedback in order to improve the design of the activity and evaluate its impact on the proposed subject.

The EVALUATION form is built on MachForm software and is hosted on the SUPSI web server located in Switzerland. The form automatically collects the user's IP address. The forms are secured using HTTPS and data is encrypted using industry-standard AES-256 encryption. Data stored on MachForm will be kept for five years after the end of the project (2024) and then completely deleted. Other information collected within this form is anonymous, and is coded and re-organized to remove the IP address and fully anonymize answers. Data is not used for profiling or commercial or marketing purposes, and will not be shared with third parties.

MAKEAWARE! is a civic engagement initiative and research project under SPEARHEAD, and all its actions are documented in this online Repository. The Repository aims to document and share the resources created and co-created with participants in the research project. It features content, applications, and information about the workshops, including an interactive map, which is designed to engage and empower participants. The Map is generated from the data collected through the GET THE POWER form.

The GET THE POWER form aims to gather information and stories about antibiotic consumption, antimicrobial resistance, and urinary tract infection experiences. The data collected from the GET THE POWER form is visualised on the Map to represent the level of awareness and engagement of workshop participants and people contributing through the online repository. Data and stories will be coded and re-organized into datasets and other visual formats that are available for open access.

The GET THE POWER form is built on MachForm software and is hosted on the SUPSI web server located in Switzerland. No external clouds such as Google Drive are used to store or exchange data. All MachForm forms are secured using HTTPS and the database that holds data is encrypted using industry-standard AES-256 encryption. No personal data is collected via this form, but MachForm automatically collects the user's IP address. Data is coded and re-organized to remove the IP address and fully anonymize the answers. The original datasets collected via MachForm and featuring the IP are deleted and only the anonymized datasets will be kept and made available as open datasets on the project Repository for everyone to use.
Within MAKEAWARE!, the datasets will be used to create visualizations, resources, and content to support engagement actions aimed at improving research and awareness on AMR and the correct use of antibiotics.

During the MAKEAWARE! workshops, participants will be asked to collaborate and share personal experiences and stories about antimicrobial and antibiotic resistance, antibiotic consumption, and urinary tract infection diseases and remedies. Different media such as photos, graphics, and texts will be used to document the outputs of the collaboration process. The outputs will be edited or coded and shared via the repository as anonymized open datasets for anyone to use.

The original media generated during the workshops will be hosted on the SUPSI server for five years after the end of the project (2024). This media will be used only for dissemination, communication, research purposes or for archiving.

All datasets and original media collected during the project will be stored on the SUPSI server and then deleted after 5 years following the end of the project (2024). During this period, the data and contents can always be accessed by making a request to makeaware.ide@supsi.ch.
You can always request to modify or delete the information provided by writing an makeaware.ide@supsi.ch

You can always request to modify or delete the information you provided by sending an email to makeaware.ide@supsi.ch
MAKEAWARE! is a civic engagement initiative and research project under the SPEARHEAD project. It is one of the actions of Subproject 3 led by the Design Institute of SUPSI University of Applied Sciences and Arts of Southern Switzerland, located at Flora-Ruchat Roncati 15, Mendrisio, 6850 Switzerland. SUPSI is responsible for the data policy and management outlined above.

SPEARHEAD is a consortium of 8 public and 4 private Swiss institutions that have joined forces to address the silent pandemic of antimicrobial resistance (AMR) by launching the ‘Swiss Pandemic & AMR - Health Economy Awareness Detect’ (SPEARHEAD) partnership. The project has five main goals: real-time data flow to and from decision-makers, better use of big data for risk stratification, timely diagnostics that can leapfrog a centralised laboratory infrastructure, better and broader citizen and community engagement, and early attention to the financial implications of the proposed innovations. These goals will be used to mitigate the expected economic and societal impacts of AMR.

Research partners:
- Universität Basel: Innovation Office (Recipient) is the project leader of SPEARHEAD and coordinator of the consortium, the department of pharmaceutical sciences leads the real-time drug alert system, and the European Center of Pharmaceutical Medicine (ECPM) leads the health-economic impact model;
- Universitäts-Kinderspital beider Basel (UKBB) leads the risk prediction model to allow optimal use of antibiotics;
- University of Applied Sciences and Arts of Southern Switzerland (SUPSI): Design Institute organises civic engagement workshops, and IDSIA develops machine learning and predictive algorithms;
- Centre hospitalier universitaire Vaudois (CHUV) leads the rapid diagnostics workstream;
- Hôpitaux universitaires de Genève (HUG) leads the prospective UTI study.

Implementation partners include Novartis International AG, Resistell AG, WAAT Switzerland GmbH, and Schweizerische Rückversicherungs-Gesellschaft AG (Swiss RE).
While Research partners lead their workstreams, the Implementations partners provide additional support (in-cash and/or in-kind contributions). Implementations partners have no access to personal health information neither personal identifiable information.