----------------------------
Atlanta, November 11-- Site directors and public health experts from South Africa, Bangladesh, Ethiopia, Mali, Mozambique, Kenya, Sierra Leone, US and the UK convened at the Child Health and Mortality Prevention Surveillance (CHAMPS) site director community meeting where data sharing issues were at the forefront of discussion.
 
With whom to share data, what data, what time frame, what access, and what governance scenarios incited a passionate and important discussion about data sharing. "The data that arises out of CHAMPS will help inform communities--what is causing child deaths, so we can prevent them," says Dickens Onyango, Assistant Director of Medical Services, Ministry of Health, Kenya. These issues are important to IANPHI because data collection, governance, and sharing are an essential core function of national public health institutes.
 

"The data that arises out of CHAMPS will help inform communities--what is causing child deaths, so we can prevent them."

--Dickens Onyango

CHAMPS data will help inform a range of public health decisions – including policy changes– to help save young lives. The information that is collected will be disseminated across multiple organizations. With the help of IANPHI, national public health institutes (NPHIs) in CHAMPS countries will have a better capacity to effectively act on the data that is collected. IANPHI also hopes to support the NPHIs becoming future repositories for CHAMPS data.

Inácio Mandomando, Deputy Science Director at Manhiça Health Research Center in Mozambique and Dickens Onyango, Assistant Director of Medical Services, Ministry of Health Kenya spoke first hand on how IANPHI has played an important role in garnering support and developing strategies for national public health institutes to handle CHAMPS data. Not all NPHIs are equipped to handle the high quality research that CHAMPS will produce. This is where IANPHI plays an important role. IANPHI is funded to support data-to-action capacity building at the national level. Ultimately, the data collected by CHAMPS it will have a global impact. Once the data is procured and released, it can be used for global policy change regarding childhood mortality.

sitedirectorscommunitymeetingchamps

Moderated by Tim Morris, CHAMPS Chief Information Officer, the data governance session at the site director’s meeting, shared insight into the many questions and concerns about data sharing inside and outside of the CHAMPS Network.

Data sharing is an important part of CHAMPS work. There can be no policy change, without the dissemination of information to the parties responsible for the policies. However, efficient data sharing relies heavily on how it is governed, especially with the sensitivity of CHAMPS research.

There are several different channels that CHAMPS data will be delivered to, including but not limited to, the local community, media, and national public health institutes. Each of these groups needs to be informed, but the nature of the data they receive differs. CHAMPS PO proposed a data sharing plan that involves a “phase-in period” where information is only shared with trusted collaborators, after that period the data would then become publically available. While it is only in the fundamental stage of development, it is the beginning of international policy change to prevent childhood mortality.

“We are the custodians of this delicate, sensitive data. We need to put controls in place to protect these families.”

--Tim Morris