09 – Strengthening Information Systems and Linkages to Care

Data ownership and hosting are critical components of information systems that are often overlooked until very late in the process of building and deploying these systems. Generally, the data collected using information systems is owned by the NTP. If private providers are involved, however, they must be consulted about ownership and protocols for data sharing need to be developed. If data need to be shared with a donor or other external party, patient privacy must be a key consideration when deciding what can be shared. Confidentiality agreements should ideally be signed with third parties or individuals who are managing the software and/or hosting for the programme in order to provide recourse if patient privacy is breached. Another important question is where servers and data are hosted. Many NTPs are averse to the idea of their data being physically housed in other countries. For many countries, this means either opting for locally based hosting service providers (who are often more expensive than large foreign cloud providers) or hosting servers themselves at the NTP or other government infrastructure.

Regardless of the choice of hosting location, key things to keep in mind are the following:

• Servers must be equipped with backup power and ideally also backup Internet connectivity so that data entry is not impacted by outages.
• Servers usually require 24/7 air-conditioning and other environmental protections from dust and humidity, as well as protection from power surges and voltage fluctuations.
• Technical support should be available so that problems with server infrastructure can be quickly identified and resolved. A comprehensive Service Level Agreement (SLA) should be developed (an SLA can serve as a commitment between the service provider and the users or NTP. Specific aspects of the service – quality, availability, responsibilities – can be agreed between the service provider and the service user).

Another important ownership consideration is ownership of the software. This is less of a concern when using an open-source tool, but programmes should ensure that they have access to the latest version of the software source code. When dealing with custom-built proprietary systems, it is important to ensure that developers make the code available to the programme. For proprietary systems that are purchased “off-the shelf” (rare in the TB world), programmes should be aware that they will not usually have access to the code (barring a special agreement to the contrary); consequently, they will be locked in with that vendor for as long as they continue to use the software.