D3.6 – Secondary data capture and interoperability II

The purpose of this iHelp deliverable, D3.6 – “Secondary data capture and interoperability II”, a public report, is to complement the first version, D3.5 – “Secondary data capture and interoperability I”, as an inventory of secondary data for the iHelp clinical studies, i.e., the information extracted from their end-users, individuals that are mostly patients, but in cases of preventive studies, also the general public. No matter their status (patient, or individual), end-users in iHelp are study participants, and this is how they are referred to in this document. The deliverable thus documents the choices made on what to measure and what to simply ask the study participants to provide, trying to strike a balance between loading people with devices (and cost) but also asking too much of them in terms of data entry. In that respect it is of interest outside the iHelp community, serving as a data collection manual outside of the strict clinical setting. It also considers how the data can be collected and how they can be represented in the iHelp big data platform.

This document is delivered in M22 (October 2022), after the compliment of the requirement collection as reported in D2.3 – “State of the art and requirements analysis III” in M20. This document presents the final secondary data inventory, as discussed between the partners responsible for secondary data collection and the clinical partners.