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
I was working in Accra, Ghana, with a team of 5 community health workers. It was 2017, and we were responsible for supporting the training of midwives and traditional birth attendants in antenatal care and how they can collect data for early detection of high-risk patients.
In my experience working with these health workers and mothers, it became increasingly clear that we cannot reduce maternal death and improve child health without addressing the fundamental problems of data collection.
Health workers need the means and capacity to collect accurate data to know the magnitude of the barriers preventing women from accessing the care they need. Understanding the problem is the only way one can take the proper actions to find solutions.
Maternal health refers to the health of women during pregnancy, childbirth, and the postnatal period.
Each stage of maternity should be a positive experience, ensuring women deliver a live and healthy baby while they themselves also remain in good health.
But that is not the case for about 295 000 women globally who died during pregnancy and childbirth in 2017, according to the World Health Organisations. One of the root causes of such needless deaths is the lack of accurate data on maternal, newborn, and child health which stifles vital plans to deliver quality health for women.
The World Health Organization's report on monitoring maternal, newborn, and child health bemoans the growing number of challenges associated with collecting data for assessing child health and the health status of and services available to women and girls in developing countries.
Some of these challenges are associated with a lack of context-specific data collection tools, difficulty accessing communities of women in need of service, and limited local capacity of health workers to use data collection tools and analyse data.
These challenges, if not addressed, hamper efforts to use data to inform decision making processes that can reduce maternal and child death and adequately track and measure progress towards attaining Sustainable Development Goals 3, target 3.1 which calls for a reduction in the global maternal mortality ratio to less than 70 per 100,000 live births by 2030.
My own experience in 2017 was not different.
When I embarked on a project to collect data relating to sexual and reproductive health (SRH) and maternal health to complement national maternal health indicators across eight regions in Ghana, I was surprised at the barriers that impeded my data gathering efforts.
These were my main struggles when trying to access and use data to support the communities I was working in:
From finding the appropriate data collection tools to the language barrier to traveling for long hours on poorly constructed roads, my team and I reached communities where we were faced with cultural barriers when interacting with data subjects, including mothers, health workers, traditional birth attendants, and adolescent girls.
The process of data collection requires resources and capacity development.
Certain aspects of data collection can be challenging in any situation. For example, language barriers and the need to provide appropriate translation and interpretation have become important for maternal, reproductive, and child health data analysis.
Therefore, it is necessary that data collection processes have additional human and financial resources for health workers and researchers working in this field.
There is a lack of standardised and comprehensive national registration systems, coupled with the fact that medical records are often incomplete, poorly maintained, and mostly only paper-based.
Paper-based data collection systems limit the ability of health facilities to properly integrate individual data from mothers and their babies across different health facilities and regions.
What happens if a mother changes locations and has to seek emergency services from a new and/or different facility? Paper-based systems, when changed to digitised format, can make data availability and sharing easier.
The lack of a centralised approach and repository to ensure effective integrations of all regional, sub-regional and national maternal and child health data remains challenging. There is the need to adopt standard processes, such as tools and systems that can receive different data inputs and interpret data using a common framework.
Foreign experts, at best, can provide initial support in the area of capacity building and technical training to health workers on how to use data collection tools. But that is not sustainable. Local experts must be empowered financially to develop local and contextually relevant data collection tools to support maternal and child health data collection.
The use of accurate and timely data from health facilities, including remote areas, allows for the continuous cycle of identifying women whose time is due for a prenatal check-up and notifying those in remote areas to come for reviews. The process enables health workers to monitor the mothers' health to prevent birth complications and deaths.
In the face of challenges such as limited resources and capacity development to reach communities and gather live-saving data, we need to be innovative and adopt intelligent approaches to collect and share maternal, newborn, and child health data. This calls for a shift to smart data collection tools that can save time, promote efficiency, and allow easy analysis and sharing of maternal health data to facilities that need them to save lives.
Establish better maternal and child health systems to improve documentation of barriers that prevent women from seeking timely services and develop solutions that focus on women’s health, not just when they are pregnant but also throughout their lifetimes.
Improve the validity and reliability of maternal and child health data to reveal critical areas for action and to provide a basis for proper future evaluation.
Track and measure progress on maternal and child health indicators and adequately estimate maternal and child mortality at national and sub-national levels. This will enhance our understanding of the magnitude of the problem and the main causes of death, leading to more effective interventions.
Adopting these three steps may be costly, and governments and development agencies working to improve maternal and child health must allocate sufficient budgets to achieve them. This is not far-fetched as some countries are already taking the lead on smart data collection innovations.
In Ghana, for example, the Ministry of Health partnered with the Millennium Village Health project to support health workers to use a mobile empowered application to collect real-time maternal health data. The introduction of CommCare, a smartphone, and tablet-based system, helps health workers record real-time information during home visits. A specialist in verbal autopsies also assists community health workers to conduct and record in-depth investigations into the cause of each death.
The data are then synchronised into a database cloud accessible on mobile phones and are reviewed once a week by a local medical team. The use of this mobile application has allowed community health workers to keep records of mothers even in rural areas where there are no health facilities, poor internet connectivity, or lack of reliable electricity.
To reduce maternal and child health means establishing why such deaths happen, what went wrong, how we could have done things differently, who we can hold accountable, and for what.
To answer all these questions, we need the data, which is the only evidence on which health workers and policymakers can take action. Health workers and researchers need practical and effective means of data collection to inform life-saving actions on maternal and child health.
There are a wide variety of tools available such as Teamscope, a data collection platform for research teams to capture and analyse data.
I could have better scaled my work for meaningful impact in 2017 If my team of 5 had access to such innovative data collection tools. In 2021 and beyond, we have the opportunity in our hands to rethink how we are using data to fight maternal mortality and give mothers and newborns in our communities better care.
Cover image: Abbie Trayler-Smith (CC BY-NC-ND 2.0 / H6 Partners)
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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