Families' trust, protected by the protocol
This website and the Espoir Sourire app handle children's health data. Here, in plain language, is how anonymity is guaranteed, what rights families have and who oversees the use of the data.
The child first, their dignity always
The entire chain — consultation, operating room, follow-up, app, research — is built around four non-negotiable principles:
- Anonymity by design — every child enters the system under a study number (ENF-xxx). No name, no initials and no full date of birth appear in exports, reports or publications.
- Informed consent — oral consent documented at the start of every follow-up call; written agreement from the parents for any clinical photograph.
- Visual anonymity — in all photographs, the eyes are masked and no name or initials appear (protocol applied in the founding thesis, appendix F).
- Prior authorizations — access to records authorized by the management of Kibuye Hope Hospital; protocol approved by the Dean's office of the Faculty of Medicine and the scientific research ethics committee of Hope Africa University (HAU).
It stays in the team's browser
The management app is designed to work without a server: all data (registry, surgeries, complications, calls) is stored locally in the browser of the device that uses it (localStorage technology). It passes through no cloud and never leaves the facility.
- No mandatory identifying personal data — the required fields are the anonymity code, sex, date of birth, province, follow-up hospital and clinical measurements. The family's telephone number, useful for follow-up, is the only contact detail and is never exported in reports.
- Controlled export — the backup export is a JSON file local to the team, intended for backup, never for publication.
- Access security — role-based access with a 4-digit code (Coordination, Surgeon, Nutritionist, Social follow-up); each role sees only the modules related to its mission.
- Erasure — resetting from the settings erases all local data on the device.
Ask, correct, refuse
Families of children followed in the network have the following rights at all times. They can be exercised free of charge at the reception desk of the hospital that follows the child or through the network coordination:
| Right | What it means in practice |
|---|---|
| To be informed | To know the nature of the data collected, its purpose (care, follow-up, research) and the people who have access to it. |
| To access & correct | To obtain the information recorded about the child and request the correction of any inaccurate data (dates, measurements, contact details). |
| To refuse photography | No clinical photo is taken without the parents' written agreement. Refusal never delays care. |
| To object to use in research | Participation in studies (such as the W/A vs W/H study) is possible because the data is anonymized; any doubt or objection is passed on to the coordination and to the HAU ethics committee. |
| To withdraw a telephone number | To ask for follow-up calls to stop at any time — follow-up then continues in consultation only. |
Publishing figures, never people
Publications arising from the network — including the founding study — follow strict rules derived from the ethics protocol:
- Each record was given a study number; no name appears in the results.
- The operating surgeons are designated by a letter (surgeon A, B, C…).
- Clinical photographs show the eyes masked, with no name or initials.
- Provinces are presented at the statistical level (numbers per province), never by address.
- Reuse of aggregated data for third-party research is subject to the agreement of the coordination and the ethics committee.
The “The founding study” page sets out these methods in full, including the study's limitations and how reachability bias was measured and corrected.