Data Use and Sharing Policy - Global NGO Deworming Inventory

Data Use and Sharing Policy

Global NGO Deworming Inventory                                                                    

The Global NGO Deworming Inventory collates data on deworming treatments administered by non-governmental organizations (NGOs). Collected data will be used to better understand the current state of global deworming, specifically for soil-transmitted helminthiasis (STH) and schistosomiasis. After data collection, the World Health Organization will compare data reported to the Inventory with national program data provided by Ministries of Health (MOHs) to the WHO Preventive Chemotherapy (PCT) Databank.

 

Primary Use of Data

Children Without Worms (CWW) and WHO will use collected Inventory data to develop a consolidated record of deworming treatments administered by NGOs globally. The Inventory will not publicly attribute treatment numbers to a specific NGO unless permission is expressly granted (in data submissions forms). General information about deworming activities, including when and where deworming occurred, will be shared publicly.

 

Inventory of NGO deworming treatment activities

WHO and CWW will use collected deworming treatment data to: a) ensure that NGO-administered deworming treatments are accurately reflected in the PCT Databank, b) quantify the contribution of NGOs generally to national and global deworming treatment coverage, and c) improve understanding of where gaps exist in reporting deworming. In addition, CWW may make related analyses available on the internet. CWW and WHO will publish, in a peer-reviewed journal, findings related to gaps in the reporting chain and treatment coverage.

 

How CWW will share the data with WHO

CWW will share the data collected in the Inventory with WHO. By comparing when and where deworming treatments were delivered, WHO will determine whether deworming reported to the Inventory by NGOs represents treatments that were previously reported to WHO through Ministry of Health channels.  Any NGO treatments for STH and schistosomiasis that were not previously reported to WHO will then be added to the WHO Databank, which is published on-line by WHO. 

WHO will adhere to the terms of this Data Use and Sharing Policy in preserving the privacy of individual NGO deworming treatment numbers – except where explicitly indicated otherwise.

 

Sharing data with national Ministries of Health

WHO may share any Inventory (preferably district-level) data from a given country with the relevant national MOH. Such data sharing is an important means by which partners can support MOH efforts to effectively monitor program activities and address treatment coverage gaps. CWW does not have any jurisdiction over the use of data by MOHs.

 

Secondary Use of Data

The Inventory, as a repository of NGO deworming treatment data, may serve as a data source for related research. Data reported to the Inventory may be cited or referenced for use in publications or grant proposals by participating NGOs, MOHs, the WHO, CWW, or others.

 

With the express permission of the NGO, collected data may be displayed on the Partners Map (available at http://www.partnersmap.org) – e.g., indicating that NGO X administers deworming medicines in District Y. The Partners Map facilitates information sharing and fosters collaborations among NTD partners. Participating NGOs can opt out of publicly sharing the number of deworming treatments administered by indicating this preference on Inventory data collection forms. If a participating NGO does not want other data displayed on the map, please inform CWW at the time of the data submission.

 

Data Privacy

Unless explicitly stated otherwise herein, CWW and WHO will not publish or otherwise disseminate data. For example, if there is only one NGO administering deworming medicine in a given district, the number of treatments administered will not be presented for that district. Such data will be aggregated at the next administrative level in which there is more than one NGO administering deworming medicine. Country-level figures may be reported regardless of the number of NGOs deworming in that country.

 

Data Validation

CWW relies on Inventory participants to internally verify their data submissions. When possible, CWW may employ basic data validation procedures including:

  • Reviewing the role of each NGO working in a district (where there are multiple NGOs deworming in one district) to ensure that the same deworming treatment numbers are not reported multiple times.
  • Reviewing NGO deworming reports with respective MOHs to ensure country-level reports submitted to the PCT databank do not already include NGO data.

 

Data Ownership

No one organization, CWW included, will have ownership of the Inventory and the data contained therein. Data submitted by an NGO will remain under the ownership of that NGO. CWW will maintain the integrity of the data submitted.

 

By submitting data for the Inventory, the NGO permits CWW to share organizational-level data with the WHO and the respective MOH. By submitting data for the Inventory and unless expressly requested otherwise by the NGO, the NGO grants to CWW the right to use the submitted data for the purposes and in the manners stated above.