To achieve malaria eradication fighting the disease will not be enough. We need to also eradicate bad data collection practices that lead to insufficient action.
I have been struggling with an eating disorder for the past few years. I am afraid to eat and afraid I will gain weight. The fear is unjustified as I was never overweight. I have weighed the same since I was 12 years old, and I am currently nearing my 25th birthday. Yet, when I see my reflection, I see somebody who is much larger than reality.
I told my therapist that I thought I was fat. She said it was 'body dysmorphia'.
She explained this as a mental health condition where a person is apprehensive about their appearance and suggested I visit a nutritionist. She also told me that this condition was associated with other anxiety disorders and eating disorders. I did not understand what she was saying as I was in denial; I had a problem, to begin with. I wanted a solution without having to address my issues.
Upon visiting my nutritionist, he conducted an in-body scan and told me my body weight was dangerously low.
I disagreed with him.
I felt he was speaking about a different person than the person I saw in the mirror. I felt like the elephant in the room- both literally and figuratively. He then made the simple but revolutionary suggestion to keep a food diary to track what I was eating.
This was a clever way for my nutritionist and me to be on the same page. By recording all my meals, drinks, and snacks, I was able to see what I was eating versus what I was supposed to be eating. Keeping a meal diary was a powerful and non-invasive way for my nutritionist to walk in my shoes for a specific time and understand my eating (and thinking) habits.
No other methodology would have allowed my nutritionist to capture so much contextual and behavioural information on my eating patterns other than a daily detailed food diary.
However, by using a paper and pen, I often forgot (or intentionally did not enter my food entries) as I felt guilty reading what I had eaten or that I had eaten at all.
I also did not have the visual flexibility to express myself through using photos, videos, voice recordings, and screen recordings. The usage of multiple media sources would have allowed my nutritionist to observe my behaviour in real-time and gain a holistic view of my physical and emotional needs.
I confessed to my therapist my deliberate dishonesty in completing the physical food diary and why I had been reluctant to participate in the exercise. My therapist then suggested to my nutritionist and me to transition to a mobile diary study.
Whilst I used a physical diary (paper and pen), a mobile diary study app would have helped my nutritionist and me reach a common ground (and to be on the same page) sooner rather than later.
As a millennial, I wanted to feel like journaling was as easy as Tweeting or posting a picture on Instagram. But at the same time, I wanted to know that the information I provided in a digital diary would be as safe and private as it would have been as my handwritten diary locked in my bedroom cabinet.
Further, a digital food diary study platform with push notifications would have served as a constant reminder to log in my food entries as I constantly check my phone. It would have also made the task of writing a food diary less momentous by transforming my journaling into micro-journaling by allowing me to enter one bite at a time rather than the whole day's worth of meals at once.
Mainly, the digital food diary could help collect the evidence that I was not the elephant in the room, but rather that the elephant in the room was my denied eating disorder.
The elephant in the room
Malaria is a life-threatening disease caused by the plasmodium parasite that is transmitted to people through a bite from the female Anopheles Mosquito. Although preventable and curable, the World Health Organization estimated 229 million cases worldwide in 2019 and 409,000 deaths.
The disease occurs mainly in tropical and subtropical areas of the world, with Africa being the most affected continent due to factors, including climate-based reasons and environmental deterioration coupled with a scarcity of resources which has hindered efficient malaria control activities.
In 2000, African leaders signed the landmark Abuja Declaration pledging to reduce malaria deaths on the continent by 50% over a 10-year period. 21 years down the line, not much has improved. According to the WHO, a child dies every minute from malaria in Africa. The declarations promised a continent-wide response to reduce malaria death and committed to increased domestic expenditures in the fight against malaria. It is 2021, and these commitments are yet to be fully realized. There still exists a high prevalence of malaria in Africa, particularly in pregnant women and children under five years of age.
In 2000, African leaders signed the landmark Abuja Declaration pledging to reduce malaria deaths on the continent by 50% over a 10-year period. 21 years down the line not much has improved. According to the WHO, a child dies every minute from malaria in Africa.
Recognizing the disease and economic burden that malaria places on millions of Africans and the barrier it constitutes to development and alleviating poverty, the Global Malaria Action Plan for a malaria-free entreated governments and other stakeholders implementing malaria intervention programs to target their limited resources towards areas where the burden of malaria is highest.
However, to make such targeted interventions, one needs access to timely, accurate, and reliable data on where to target, whom to target, and how to plan the targeted interventions. In order to also identify, treat, and eradicate malaria cases, there is the need for data that allows authorities to track and monitor emerging transmission patterns and take appropriate action to halt such transmissions.
That is why we need a new approach with data at the forefront, where decision-making is backed by evidence that can yield positive and maximum outcomes. As more African countries experience budget shifts towards the COVID-19 response, we cannot afford to invest in malaria eradication programs without a strong response backed by relevant data.
Data can be collected in real-time, interpreted through analytics and other visualizations, and fed into the national health system allowing health officials to access and make informed decisions about where to deploy resources. That will require a 3 step process.
Community health workers should be trained on how to effectively collect and report malaria data from the field using tools such as Teamscope. Data collectors need to know what type of data to collect, what format to store and transfer the data and understand how the data will be integrated into existing systems.
Once data is collected and transferred, data integration tools must be used to cleanse and prepare the data. Data visualization tools such as Google Data Studio can help interpret data to make them easy to understand to inform targeted interventions. Once data is cleaned and ready, it can also be used to perform predictive modeling and use artificial intelligence to analyze malaria disease patterns and make predictions.
Having gone through the above steps, stakeholders, including donors, governments, and public health officials, can now understand the magnitude of the problem, plan their logistics and mobilize critical resources for targeted interventions.
This three-step approach can improve decision-making and support malaria interventions that save lives, particularly in sub-Saharan Africa. Initiatives such as the African Leaders Malaria Alliance (ALMA), an intergovernmental organization dedicated to ending malaria deaths by 2030, are already deploying this approach to save lives. They actively use data to support national governments to make informed decisions about malaria interventions.
ALMA works to enhance accountability for results in the fight against malaria, focusing on using data-driven tools such as scorecard accountability and action tracking mechanisms in African Union member countries.
Through the use of scorecard management tools, the initiative is able to identify bottlenecks in malaria interventions in member states and facilitate appropriate action in the fight against malaria.
The main objective of scorecards is to use data to inform action. The ALMA approach integrates data from different sources into scorecards to support countries in specific activities such as tracking national and sub-national performance on malaria.
Additionally, the scorecards provide a platform where all citizens have access to the data they need to ask the relevant questions and hold duty bearers accountable. The process is summarized in four simple steps.
Data from existing sources such as the Health Management Information System (HMIS) and Demographic and Health Surveys (DHS) are populated in the scorecard. Such data includes malaria cases confirmed by Rapid Diagnostic Testing (RDT), the severity of malaria cases, and the localities where these cases occur.
After populating malaria data from different sources, a data management process reviews the scorecard information, analyzes them, and uses the results to inform and document recommended actions in an action tracker.
When these recommendations are made, it is time to take action. At this stage, programs and interventions are designed by relevant stakeholders and implementation partners to take action to address identified problems.
The enforcement components of the scorecards where various management and other existing accountability mechanisms are used to monitor the implementation of identified actions.
In effect, the use of scorecards is helping to make governments aware of urgent bottlenecks in malaria interventions and ensure that decisions are made to fast-track the implementation of critical activities. It also supports local leaders in mobilizing resources for the community and allowing international stakeholders such as donors and partners to know what investments are needed.
The work of ALMA is one of many examples of how data can be of value in the fight against malaria. These data-driven initiatives are good examples that must be exemplified in other jurisdictions where malaria cases are prevalent.
To complement their work and encourage youth inclusion, ALMA established the African Leaders Malaria Alliance Youth Advisory Council to advocate for youth participation in advocacy for malaria at continental, regional, and country levels. The council continues to champion the use of data-driven scorecards as essential catalysts in the fight against malaria.
Odinaka Kingsley Obeta is the West African Lead for the ALMA Youth Advisory Council. He shares his experience on how data can be used in the fight against malaria.
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
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The call to end malaria is ambitious but achievable.
In 2019, Algeria became the third African nation certified malaria-free by the World Health Organization (WHO). Critical to their success, amongst others, was the availability of solid surveillance systems that made available data on malaria cases to ensure that every last infection was rapidly identified and treated.
By making data available, countries and global health partners can ensure targeted interventions to save thousands of lives each year.
21 years after the Abuja Declaration on Roll Back Malaria in Africa, we cannot afford to lose a single life. We have the tools to take appropriate and timely actions.
Editor's note: The Author is a member of the ALMA Youth Advisory Council.
Cover image credit: Anna Martinez Codina / Flickr - CC BY-NC-ND 2.0
Dear Digital Diary,
I realized that there is an unquestionable comfort in being misunderstood. For to be understood, one must peel off all the emotional layers and be exposed.
This requires both vulnerability and strength. I guess by using a physical diary (a paper and a pen), I never felt like what I was saying was analyzed or judged. But I also never thought I was understood.
Paper does not talk back.Using a daily digital diary has required emotional strength. It has required the need to trust and the need to provide information to be helped and understood.
Using a daily diary has needed less time and effort than a physical diary as I am prompted to interact through mobile notifications. I also no longer relay information from memory, but rather the medical or personal insights I enter are real-time behaviours and experiences.
The interaction is more organic. I also must confess this technology has allowed me to see patterns in my behaviour that I would have otherwise never noticed. I trust that the data I enter is safe as it is password protected. I also trust that I am safe because my doctor and nutritionist can view my records in real-time.
Also, with the data entered being more objective and diverse through pictures and voice recordings, my treatment plan has been better suited to my needs.
No more elephants in this room