Sharing data with communities to strengthen civic engagement and enhance data-driven decision making in the health sector
At the first of many “shareback sessions”, Data Zetu shared citizen-generated data with stakeholders at the frontlines of the fight against HIV in southwestern Tanzania.
This blog post was published as part of the Data Zetu project. Data Zetu is now an initiative of the Tanzania dLab, a local NGO that promotes innovation and data literacy through a premier center of excellence. For more information about the dLab, visit www.dlab.or.tz. For more information about the Data Zetu project, visit www.irex.org.
In May 2018, Data Zetu partner Humanitarian OpenStreetMap Team (HOT) facilitated a community workshop to bring together local leaders and stakeholders and discuss the impact of the health data collected in collaboration with Data Zetu (read our previous blog here to learn about this citizen-generated data).
This “shareback session” followed Data Zetu’s belief that we don’t collect data; we borrow it. After working with communities to identify what’s important to them, sessions like this one help those community members and their leaders to distill, digest, and visualize this data to inform their decisions. Read on to learn more about how this feedback loop has already led one NGO to improve its services and reporting.
Who was at the workshop, and what did we do?
Over two dozen stakeholders representing different institutions fighting for HIV/AIDS eradication participated in this session, from sectors including government, private, faith-based, and NGOs.
These included Community Development Officers, Ward Executive Officers, the Mbeya Regional Secretary, doctors and medical officers, Shina Balozi, Mtaa leaders, and monitoring and evaluation officers of different organizations dealing with HIV/AIDS such as KIHUMBE, SAUTI, BAYLOR and NACOPHA (Tanzania People Living with HIV Network).
The workshop covered the following lessons and hands-on training:
- Exploring what maps are and how maps can be a powerful tool for better decision-making and, consequently, increasing access to HIV-services in communities.
- Understanding health data collection good practices, such as the four key factors that underpin health data collection efforts: type of epidemic, context, response, and cost. This includes knowing if an epidemic is concentrated or a general epidemic and if the behavior of the community can be the source of the epidemic.
- Reviewing the community mapping activities that took place in Mbeya (read more here) and the challenges associated with the community-driven process.
- Training participants on OpenDataKit, the mobile tool deployed for surveying, to ensure stakeholders truly understood the data collection process before exploring the final map outputs
- Presenting HIV-related maps, discussing their insights and exploring their potential uses together with stakeholders.
A look at the citizen-generated map data we reviewed
During this session HOT introduced several maps depicting community-generated data based on surveys its team of voluntary mappers conducted in wards across Mbeya District Council. Here are a couple:
Leaders in the fight against HIV informed the data we collected.
It’s increasingly understood that data is better used when it addresses a specific problem of a potential data user. That’s why the data that was collected and shared back to participants had been identified at an initial meeting with HIV stakeholders in Mbeya in February. There, participants discussed their data needs to be able to better confront the challenges and find solutions to providing wider access and availability of HIV-related services to the general public.
Stakeholders highlighted key points to be mapped that will help simplify their operations. This “wish list” included:
- Data about which households and communities are aware about HIV-related services accessible to them;
- Basic household demographics (to better understand the spatial distribution of people across subwards);
- Location data mapping “hotspots” (i.e. where HIV was known to be transmitted);
- The boundaries of shina and the balozi in charge of them (capturing the sub-administrative boundaries within a subward belonging to a local leader — the most granular level of administration existing in Tanzania);
- Mapping HIV prevention centers and support organizations as well as household access (distance) to such institutions.
What HIV actors are saying about this community mapping data
Participants of this shareback session offered a few insights about the value of this information. Many of the echoed insights from Petro Emanul, Mbeya Regional Coordinator for TACAIDS, who explained that layering this community-mapped information against other datasets, such as the location of testing facilities or household populations, would help his partners to know where to direct their HIV prevention and support services:
“We have reached a stage where we do not need all our data on excel format, but rather on maps where a person can actually see the visualization of information. Maps will help us to arrange our resources well to reach targeted groups.”
— Deusdedith Clavery- Monitoring and Evaluation Officer, Sauti Project
“Before the workshop i didn’t know that Health data can be visualized on a map, As a health personnel our ultimate goal is to reduce HIV new infections, Having a map which indicate HIV hotspots will help us in provision of education to citizens.”
— Dr. Letisia Mgeta, Ruanda Health Center
“The data collected can have multiple uses, for example the outbreak of diseases can be tracked down easily if you have a detailed map like these ones.”
— Mtaa Executive Officer from Kalobe ward
Workshop stakeholders also highlighted how hotspot data will allow them to establish mobile clinics in areas with high HIV transmission rates and pinpoint communities with a lack of HIV awareness to implement HIV education programs and address cultural stigmatization around the issue.
One community-based organization has already made use of this citizen-generated data to improve its services and reporting. KIHUMBE — a PEPFAR implementing partner — has used the maps to increase HIV testing and counseling services by:
- Combining community-generated data of nightlife hotspots with health facility locations to improve referrals and assist female sex workers — including finding and supporting over a dozen of these at-risk individuals.
- Increasing referrals to health facilities: Says Jeremia, their M&E officer: “using these maps has increased the rate of referrals”, since “community providers are able to view [nearby] health facilities” and link clients to them. Up to now they have linked 25 clients this way.
- Giving voice to citizens to expose service gaps: The mapping efforts exposed medical shortages by those seeking sexual reproductive health (SRH) support, with 25% noted medicine shortages and a sixth reporting a lack of medical staff at facilities. The distance to reach HIV testing centres was alarmingly high and was found to be a barrier to most residents.
- Informing budgets: Jeremia explained that KIHUMBE will share the maps “with LGAs and see how they can include services in their budgets, as [the maps] will indicate the target population [locations]”.
How else can this data improve HIV services in Tanzania?
The citizen-driven data collected has resulted in maps which visualise local demographics, the distance to HIV testing centres, HIV risk areas, HIV support organizations, and Shina leader administrative boundaries.
The workshop was vital in bringing together health officials to understand the impact that mapped data can have on improving health in the area. These maps can be used to pinpoint areas in need of HIV education and awareness programmes to reduce the risk of transmission from people living with HIV.
Public health managers and health care providers are now aware of how maps can be used to understand the location of their patients and which factors are contributing to their illnesses. These maps will help management at the ward offices — Ward, Subward and Shinaleaders — to better understand the structure of the areas under their jurisdiction to make more sustainable solutions for their community.
On top of the huge impact these maps will make to HIV service improvements, the team proposed other potential use cases to participants. For example, in the case of an emergency such as a fire, Shina maps will allow responders find those affected by pinpointing down to a micro-level which Ward, Subward and Shina the crisis is located. Similarly, outbreaks of disease can now be traced down to the lowest administrative boundary by tracking patient Shina leaders to reveal the source of the outbreak.
