Data Privacy and Management Policy (DPMP)


This Data Privacy and Data Management Policy (DPDM) outlines the principles, responsibilities, and measures adopted by the MAKEAWARE! initiative to ensure the secure, ethical, and transparent handling of both personal and research data. It defines how data are collected, processed, protected, shared, and preserved throughout the project’s lifecycle.

Updated

October 2025

Scope and purpose

The policy integrates the objectives of a Data Privacy Policy (focused on confidentiality, consent, and compliance with data protection laws — with those of a Data Management Plan) focused on the organisation, storage, and long-term stewardship of research outputs.

MAKEAWARE! is part of Subproject 3 of the SPEARHEAD research programme, developed by the University of Applied Sciences and Arts of Southern Switzerland (SUPSI) and funded by Innosuisse. The initiative investigates public knowledge and narratives related to antimicrobial resistance (AMR) and urinary tract infections (UTIs) through participatory and design-driven research. Individuals taking part in MAKEAWARE! contribute information and personal stories through collaborative activities. These contributions support the creation of anonymised datasets and resources intended for public use, scientific research, and communication.

This DPDM ensures that all data handled within MAKEAWARE! are managed in accordance with ethical research standards, institutional data governance policies, and Swiss data protection legislation.

MAKEAWARE! project has been reviewed and approved by the SUPSI Ethics Commission (https://www.supsi.ch/en/ethical-commission), which verified compliance with legal, ethical, and technical standards for research involving personal and health-related data.

Repository navigation and hosting

The MAKEAWARE! website is hosted on GitHub Pages, a service operated by GitHub, Inc., part of Microsoft Corporation. The project team does not collect, store, or process any personal or identifiable information from site visitors. However, GitHub may automatically gather certain technical and navigation data—such as IP addresses, browser types, usage statistics, and cookies—as part of its platform operations. These data may be collected and processed exclusively under GitHub’s own Privacy Statement (https://docs.github.com/en/site-policy/privacy-policies/github-general-privacy-statement) and Terms of Service. The MAKEAWARE! team has no access to and does not use any information that GitHub may collect. In accordance with GitHub’s usage policy, which restricts access to individuals aged 13 and above, the MAKEAWARE! website inherits this limitation. A link to GitHub’s privacy policy is included in the website footer to ensure transparency.

The story collection tool

The story collection tool is an interactive interface used to collect stories and reflections related to antibiotic consumption, urinary tract infections (UTIs), and awareness of antimicrobial resistance (AMR). It invites contributors—whether former workshop participants or online visitors—to describe their experiences with antibiotic prescription and use by responding to a set of guiding questions. These prompts are designed to support structured data collection while allowing individuals to share content they consider meaningful.

The form operates through an API-based system that transmits each submission directly to the project’s institutional email account. Once received, the stories are unpacked and organised into a structured dataset hosted on SUPSI’s institutional OneDrive server, following the format of the original submissions. Each text entry is preserved exactly as provided to ensure faithful representation and enable accurate subsequent analysis.

Collected stories are compiled into a structured dataset, in which each row corresponds to an individual contribution and each column reflects one of the original questions or prompts. Formatting elements such as colour are maintained from the original submission to support legibility and assist with early-stage interpretation.

No personal identifiers—such as names or contact details—are requested or stored. While certain metadata (e.g. IP addresses) may be technically included in the email transmission, such data is not accessed or used in any processing. All entries are fully anonymised before inclusion in the dataset.

The anonymised dataset is available for download directly from the project website. The data have been used within the MAKEAWARE! project to:

The story collection tool remains open and continues to welcome new submissions as part of the ongoing dissemination and outreach phase of the MAKEAWARE! Initiative. The same policies described here will be applied.

Workshop outputs

As part of the collaborative activities conducted during the MAKEAWARE! workshops, participants were invited to share personal reflections and experiences related to antimicrobial resistance (AMR), antibiotic use, and urinary tract infections (UTIs). These contributions were central to the co-creation methodology of the project and took various forms, including photographs, drawings, written stories, and group-generated visual materials.

The materials produced during these sessions were documented to capture the collective outcomes of the workshops. These outputs have been curated and edited to ensure anonymity and to support reuse. Once anonymised, the materials are made available via the project website (https://spearhead-amr.github.io/makeaware/) as open datasets licensed under Creative Commons Attribution–ShareAlike 4.0 (CC BY-SA 4.0). This license allows others to use, adapt, and redistribute the materials for research, education, and communication, provided appropriate credit is given and any derivative works are shared under the same terms.

The media generated during the workshops and anonimised is securely stored on SUPSI’s institutional server, located in Switzerland. These files will be retained for five years following the conclusion of the project in 2024, in line with institutional research data management policies. Access to this material is restricted to the project team, and it will be used exclusively for:

Workshop sign-in form

The sign-in form was used to collect participant information for workshops that formed part of the core methodology of the MAKEAWARE! initiative. These workshops are no longer active, as the project has concluded. This page serves as a public record of the project’s data practices. The form was designed to gather background information about participants, including their familiarity with antimicrobial resistance (AMR) and urinary tract infections (UTIs). This information was used to tailor the content and structure of the workshops during the active phase of the project.

The personal data collected included participants’ full names and email addresses, which were used to share practical information before each workshop and to collect feedback and additional input after the sessions. The form also automatically logged the IP address of each submission, as part of the standard functionality of Microsoft Forms.

All data submitted through the sign-in form was transmitted securely via HTTPS and stored in encrypted form within SUPSI’s institutional Microsoft 365 environment. The project followed Microsoft’s security protocols for both data in transit and data at rest, ensuring a high standard of protection throughout the data lifecycle. Data remained under the management of the university’s IT services and in compliance with institutional data governance practices. Only email addresses have been retained, while all other personal information has been permanently deleted. These email addresses will be stored for a period of five years following the project’s conclusion in 2025, after which they will be permanently removed from the system. Retention serves the sole purpose of enabling potential follow-up communication, as indicated in the original registration form. During this period, access is restricted to the SUPSI team members who worked on the MAKEAWARE! project and used exclusively for the purposes of this project as outlined in this policy. This information has not been shared with third parties, including other partners involved in the broader SPEARHEAD project.

In some cases, data collected through the form may be used to support the dissemination of research outcomes. However, any information included in reports, publications, or public summaries is fully anonymised and aggregated to illustrate participant activity and overall engagement. No personally identifiable information is ever disclosed in these outputs.

About SPEARHEAD

SPEARHEAD (Swiss Pandemic & AMR – Health Economy Awareness Detect) is a national research flagship supported by Innosuisse, the Swiss Innovation Agency. The initiative brings together a consortium of twelve Swiss institutions (eight public and four private) to confront the escalating challenge of antimicrobial resistance (AMR). More information is available at spearhead-project.ch. The form was designed to gather background information about participants, including their familiarity with antimicrobial resistance (AMR) and urinary tract infections (UTIs). This information was used to tailor the content and structure of the workshops during the active phase of the project.

The project is structured around five strategic goals:

The MAKEAWARE! initiative—developed within Subproject 3 of SPEARHEAD—directly supports these objectives by involving non-expert individuals in the co-creation of open data, personal narratives, and civic visualizations. Through participatory workshops, online contributions, and public storytelling, MAKEAWARE! enhances citizen engagement, raises awareness on AMR, and fosters ethical data sharing practices that align with the values of transparency, inclusion, and social responsibility.

SPEARHEAD Partners and Roles

Research Partners (Public Institutions):

Implementation Partners (Private Sector):

Data Access and Cancellation

All datasets and original media collected as part of the MAKEAWARE! initiative are securely stored on institutional servers managed by SUPSI. In line with the project’s data retention policy, this material will be permanently deleted five years after the official end of the project in 2025.

During this retention period, data and related materials may be accessed upon request. Participants also retain the right to modify, delete, or withdraw any information they have provided at any time. Such requests can be addressed through the institutional privacy page https://spearhead-amr.github.io/makeaware/, or by contacting SUPSI’s official privacy office at privacy@supsi.ch

Responsibilities and Contacts

MAKEAWARE! is a civic engagement and research initiative developed under Subproject 3 of the SPEARHEAD programme, and led by the Design Institute at the University of Applied Sciences and Arts of Southern Switzerland (SUPSI).

SUPSI is the institution responsible for the implementation of this Data Privacy and Management Policy, and for ensuring that all data collected through the project is treated in accordance with ethical research practices and applicable data protection regulations.

Institutional contact:
SUPSI – Design Institute
Via Flora Ruchat-Roncati 15
6850 Mendrisio, Switzerland

The project was developed under the scientific leadership of Serena Cangiano, Senior Researcher at SUPSI.

Project-related data enquiries should be directed to makeaware.ide@supsi.ch or serena.cangiano@supsi.ch