REFLEX HEALTH DATA SHARING RESEARCH PROJECT

Purpose of the Reflex Data Sharing Research Project

Our main focus is to enable the research on the potential of a wearable health data resource (Reflex Lab) that can support a diverse range of research intended to improve the prevention, diagnosis and treatment of chronic health conditions, and the promotion of health throughout society.

ReflexDAO is exploring the potential for remote, decentralized collection and anonymous sharing of novel data assets from wearable devices, and potentially other sources in the future. This research aims to understand how various factors such as lifestyle and environment affect the health of participants worldwide, with the ultimate goal of improving overall health and wellbeing.

The project focuses on identifying and developing incentivized, remote, decentralized, and anonymous methods for detecting lifestyle and genetic risk factors that contribute to chronic health conditions. By analyzing the unique data sets collected and shared by participants, researchers may discover simpler ways to identify the early onset of chronic conditions and develop preventive measures. While the project is not designed to directly benefit current participants, it aims to provide future generations with a better chance of leading healthier lives.

Anyone, regardless of health status, can join this project. Participation involves agreeing to share data collected from wearable devices anonymously - Reflex Data Sharing Consent. This data will be stored on servers managed by Brainstem Digital Health (Brainstem) Ltd (UK) and used in an anonymized form by researchers for many years. ReflexDAO will handle all data with strict confidentiality and robust controls, ensuring that no identifiable information—apart from the blockchain wallet public address linked with the Reflex app—is stored with the data. This wallet address will not be shared with be shared with other third parties.

Do I Have to Participate in This Project?

No, participation is entirely voluntary. If you choose to participate, you will be asked to acknowledge your consent on the metadata screen of the Reflex app. By providing this acknowledgement, you confirm your willingness to participate, specifically agreeing to share anonymized data, collected from wearable devices for research purposes.

Are There Any Risks in Joining the ReflexDAO Data Sharing Research Project?

Participation in the project should not pose any risks or harm. The project is designed to explore the potential health benefits of incentivized data sharing from remotely collected health data assets. It does not aim to conduct research on the health of individual participants. All data is anonymized, ensuring that it cannot be traced back to you.

How Will My Information Be Kept Confidential?

Please read the Data Sharing Privacy Notice

Reflex Lab employs a privacy-preserving “compute-to-data” (C2D) environment, provided by Ocean Protocol, which ensures that the data resource remains on a secure server controlled by ReflexDAO. Researchers can run their algorithms on the C2D host but cannot download a copy of the data itself.

Additionally, ReflexDAO has implemented stringent procedures to protect participant confidentiality, including advanced computer security measures to prevent unauthorised access.

Who Will Be Able to Use My Data?

Data shared by participants will be integrated into the Reflex Lab and made available to researchers. This includes researchers from other countries and commercial companies seeking new treatments. The results of research conducted using Reflex Lab will be shared with participants and others who are interested.

How Can I Withdraw If I Want To?

The Reflex Lab is most valuable when participants do not withdraw, so we encourage potential participants to discuss any concerns before agreeing to join. If you wish to withdraw at any point, you can do so:

In addition to stopping data sharing, any previously collected data will be deleted and thus, will no longer be accessible to researchers. While this prevents your data from contributing to future research, it is not possible to remove your data from analyses already conducted.

The Data sharing consent form outlines the agreement participants enter into when sharing their data with ReflexDAO and associated researchers. By acknowledging it, participants agree to the following key points: This consent essentially gives ReflexDAO and researchers the ability to use the data for research purposes while ensuring its protection for ethical and scientific purposes.

Who Do I Contact If I Have Concerns?

If you have any concerns or complaints about this project, please contact us via email at team@reflexdao.com.