Digitising health records to identify & respond to emerging threats

Digitisation of health records in the Global South, enabling data-driven action to identify and respond to emerging health emergencies.

The team leads for the project in The Gambia are Yorro Cham (ActionAid) and Rustam Nabiev (Shifo Foundation). In Indonesia the project lead is Fransisca Fitri (ActionAid).

The Covid-19 pandemic has demonstrated the vital importance of quality data in enabling effective and immediate responses to health emergencies. Only 15% of low-income countries have digital health records and it can therefore be difficult to access and act on essential data. This continues to be a root cause of poor outcomes and inefficiencies in the health sector.

A key barrier to creating a complete dataset which enables identification and effective responses to emerging health threats is that over 50% of the world’s population do not have internet access, so recording and uploading data cannot be electronic in remote areas. This puts burdens on healthcare workers, reduces time available for providing quality care and undermines the data quality. It also perpetuates inequality, as marginalised populations are under-represented in data sets so may not be factored into public health policy- and decision-making. People without digital health records are also less likely to access vaccinations, treatments and information about health risks.

This project is designed to overcome these barriers, digitising existing paper systems to create inclusive and accessible data sets. We will pilot this in Indonesia and The Gambia as both countries face challenges in data collection and evidence-based response.

This solution has the potential to benefit entire populations. In The Gambia, Smart Paper Technology is already being used to digitise the immunisation records of every child under five (269,213 children). If Indonesia’s government adopts our solution it could reach millions. Target groups include high risk individuals, children and their families, front-line health workers, governments, and other healthcare stakeholders.

The solution addresses the need for more efficient, accessible and interactive use of health data on an individual level, for example by sending SMS notifications when vaccinations are due and by enabling health workers to identify people at particular risk from outbreaks. It also addresses a wider need for comprehensive and consistent health data which can be easily analysed to identify and investigate risks.

We will prioritise the needs of at-risk populations such as women living in poverty, as they are less likely to access public health advice and have their health records digitised. The technology has been designed with these groups in mind and is capable of capturing data in locations without electricity or internet. ActionAid has a strong presence in the project communities and will use regular feedback from them to inform the proposed solution.

The project will provide digitised health records, programmatic and supply chain data, with the aim of ensuring entire populations can benefit from analysis of trends at community, regional and national level, as well as from targeted interventions.

There will be no cost to users, health facilities or governments to have their data stored or to access the dashboard during the project, thus ensuring all health records can be captured and that data can be made accessible to relevant bodies. In both project contexts, the dashboard and related components such as the Smart Paper Technology forms used in The Gambia would be handed over to governments following a successful scale up, ensuring they are still free for users and health facilities and with very low or no cost to the government, depending on the model agreed. There is also potential to replicate this model in more countries and to adapt it to new contexts, increasing the number of people and new user groups who could benefit.

Our solution will have a significant impact by ensuring better health data is available for analysis, particularly relating to at-risk groups. It will also increase data accessibility for health workers and decision-makers at local, regional and national levels. The model includes feedback loops, such as SMS messages sent to at-risk communities, so they can access accurate information about potential risks and SMS prompts to health workers.

Our solution is currently tracking immunisation records for 269,213 children in The Gambia. This project could reach over two million citizens; initial target groups are children under 15 and their families, health workers and people at higher risk of exposure due to their occupation, health status or location. In Indonesia, we expect 108,034 children under ten and their parents to directly benefit from the pilot, with all 804,276 people in Solo and Mamuju ultimately benefitting.

The pilot will focus on children, young people and families and other at-risk groups because they are at highest risk from most outbreaks – e.g, recent polio, measles, diphtheria and rubella outbreaks in Indonesia. In addition, if data were routinely tracked for every child, over time this would translate into comprehensive data on the wider population.

In The Gambia, we will initially pilot our solution in two districts – Lower River Region and Western Region 2, engaging all health facilities and benefitting 813,096 people. All health workers in The Gambia are using Smart Paper Technology to digitise child immunisation records and are familiar with this model. We would test the effectiveness of the system with new user groups and with disease surveillance in the first six months and conduct a thorough evaluation. We would then roll out the interventions nationwide in the second and third years of the project.

In Indonesia, our solution is at an earlier stage of development. We would pilot and evaluate our model in Solo City, Central Java Province and Mamuju District, West Sulawesi for the first two years of the project. We will engage government bodies at local, regional and national level throughout the project so that we are well positioned to scale the solution beyond the pilot locations in the third year. We will engage the Ministry of Health from the design phase of the project to ensure our data collection mechanism aligns with their existing dashboard and will work alongside regional and province levels to evaluate the pilot.

A detailed monitoring and evaluation plan will be developed at the beginning of this project, based on the indicators currently used in the pilot in The Gambia (results given above) and in our child health project in Indonesia. Thorough and participatory evaluations will take place throughout the project, including an independent evaluation. This will include:

1)      Indicators showing availability of digitised data to fill gaps in government data:

Number of people with complete vaccination/ health data recorded

Number of people at-risk of specific outbreaks

Number of at-risk people detected and vaccinated as a result of the project

Number of outbreak cases reported with complete data (e.g, birthdate, age)

2)      Indicators showing the impact of surveillance/ early warning data:

Number of confirmed outbreak cases with laboratory testing and an imported source

Number of early warning alerts to predict potential epidemic prone outbreaks across the country/ region/ district/ community

Number of cases among target populations with a digitised vaccination record

Number of cases reported per community

3)      Indicators showing the effectiveness of this solution:

Perceptions of stakeholders on the impact of digitising health data in low resource settings

Incidence of data recording error

Extent of integration with government platforms/ data sets.

The engagement of relevant government departments is crucial in rolling out the project. Barriers could arise if the Ministry of Health in either country chooses to take a different approach to digitising health records. To overcome this, we will continue to work closely with the relevant government bodies on the design and implementation of this solution.

A key barrier to creating a full data set is that hard-to-reach communities, for example those without internet access, are often excluded from technological initiatives. They can therefore be under-represented in data sets. This project is specifically designed to overcome this barrier, as it relies on existing paper systems, which are accessible to all, being digitised at community level.

There could be financial barriers to rolling out this technology widely – for this reason, we have chosen to pilot the model in two locations only in Indonesia. This will provide sufficient data on the effectiveness of the technology whilst keeping costs down. However, the model is cost-effective because we are modifying existing health processes and can continue to adapt the model for future outbreaks – for example, the Smart Paper Technology is already being used to improve public health management by supporting vaccine distribution.

ActionAid The Gambia, YAPPIKA-ActionAid Indonesia and ActionAid UK are members of the ActionAid Federation. The ActionAid federation comprises around 40 independently constituted national members, an international board of trustees, a global secretariat and a General Assembly. Shifo Foundation is an independent not-for-profit with which we partner. 

Digital inequality is a feature of the widening gaps in our society. One of the less discussed ways that this impacts marginalised communities is through the lack of accurate health data. Digitised health data is essential for disease surveillance, planning services, managing stock levels, identifying weaknesses in systems and general public health management. The Covid-19 pandemic has demonstrated how essential it is that we bridge this gap.

Our health record digitisation experience offers an effective solution to improving healthcare data capture in communities with minimal access to electricity, hardware and reliable internet. With the support of the Trinity Challenge we can pivot from immunisations and expand this model to improve reliability, coverage and coherence in public health data in low and middle income countries.

Through funding and support from the Trinity Challenge, we can tailor and test our approach. With demonstrable success in this area we aim to be in a position for the work to become adopted on a sustainable basis by governments of The Gambia and Indonesia and be in a position to disseminate this technology and leanings to other countries in the ActionAid Federation and beyond.  

There are four core areas in which members of the Trinity Challenge could strengthen and add value to our solution:

Communications: government adoption of and commitment to these projects is crucial to their sustainability.  We would be keen to work with a partner, such as The Brunswick Group, who would help to plan and maximise our communications strategy and approach for this project.

Public health research: there is an opportunity to combine this approach with research and knowledge from a research institution such as the John Hopkins University to enhance data collection and analysis.

ICT and software support: we would also value additional support on web based technology to deliver a guidance handbook for healthcare professionals.

Maps and other data sets: access to and support from geospatial/systems data and experts at Google could also significantly enhance this project to improve geographic elements of data capture.