The Ministry of Health of Country X has committed funds towards designing a successful implementation study to determine the optimal strategies to deliver childhood vaccinations to nomadic and remote communities in the country.

Special outreach teams (SOTs) will be deployed to a selected sample of known nomadic and remote communities. The teams will be supplied with all logistical requirements, i.e. vehicles, ice boxes, adequate vaccine stocks, translators, etc., and be trained to deliver the required vaccinations to all children under 5 years old in these communities and collect quantitative data on the existing level of vaccination coverage, numbers vaccinated, document feasibility challenges and tracking costs. The SOTs will work in coordination with the regular community health workers in the area delivering routine vaccination services in addition to other primary health–care services.

In addition to the SOTs’ intervention, in a selected subsample of communities, a key individual from each community will be identified to participate in a smart phone–based GPS tracking study, to assess the feasibility and utility of locating nomadic communities in real–time. Solar–powered battery packs will be supplied to these key individuals. Their location will be tracked in real–time and reported to the SOTs for more effective delivery of services.

Part 1. Data Collection

The implementation is rolled out in five nomadic groups in the area. Two of these groups are selected for the real–time GPS location study and key members of these groups are provided with the smart phones for GPS tracking of their location. The SOTs contact these groups and enumerate the names, family details, demographic characteristics, health details and vaccination status of all the children under 5 years old in the five groups. They administer the first dose of vaccine to all eligible children and conduct community meetings.

The SOTs will maintain an ongoing registry of new births, new entrants into the nomadic group, marriages, etc. They will follow–up the pattern of immunization coverage over the years using a time–series analysis. They will also work in close coordination with the local public health system and share the data with them for their health management information system records.

Part 2. Data sharing, dissemination and disclosure

For the following scenarios, assume that a group outside the formal public health system (perhaps an NGO or research organization) has already been collecting data.

Group 1. Sharing with public health

Keep in mind the information we added to the vaccine case above and consider the following development. Public health officials are interested in boosting vaccination rates in the country. They want to start a vaccine registry. Given the richness of these data, they are asking for name–based information.

They argue that it is important to ensure that all children receive all vaccinations, that resources are not wasted, and that children are not put at unnecessary risk by duplicating vaccinations.

Consider the questions below.

• Can identifiable health information be shared with public health for the purposes of creating a registry?

• Can the GPS location information be shared with the public health system?

Group 2. Sharing with forestry officials

It is not only public health officials who want your data. While this study is ongoing, the local forestry officials approach the research team. They complain that some of these nomadic groups are engaged in poaching wild animals for their hide and teeth in the forest area.

They know that GPS tracking is being done for these nomadic groups for research purposes. They want the research team to share the data so that they can keep them under surveillance.

Group 3. Dissemination in an outbreak

The researchers regularly report vaccination levels back to the nomadic populations that they are tracking. Imagine an instance in which nomadic populations have particularly low levels of vaccination for polio.

Consider the questions below.

• In the context of an outbreak in the broader population, can they, should they, and must they also disseminate information about vaccination rates in nomadic communities more broadly?

• In the context of an outbreak in the nomadic community, should researchers disseminate the information to neighbouring communities and those that the outbreak has the potential to reach?

• What risks are associated with this decision to release this information?

Group 4. Disclosure

Imagine that our researchers find a case where two children under 5 years old have congenital syphilis.

The mother is pregnant with a third child.

Consider the questions below.

• Should the researchers disclose the name of the children and parents to health officials so that they can offer testing and treatment?

• Could the involvement of health officials and their subsequent interaction with the family effectively amount to public disclosure? If so, is disclosure still warranted?

• Are there ever circumstances when the names of individuals with disease should be disclosed to the public?

Source: Adapted from Gidado SO, Ohuabunwo C, Nguku PM, Ogbuanu IU, Waziri NE, Biya O et al. Outreach to underserved communities in northern Nigeria 2012–2013. J Infect Dis. 2014;210(Suppl 1):S118–24.