The COVID-19 pandemic continues to demand that data collection and digital health technologies hold the forefront of agendas for various national, regional, and international forums. Meanwhile, the academic and media landscape is currently exploding with articles, blogs, video broadcast preaching phases such as “Either no data or no progress”.
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
New technologies using data to fight COVID-19, or using data to help combat health crises. Amid all these conversations, we must, however, also consider whether countries have the technical capacity and relevant policies to support the deployment of digital health interventions in a sustainable way.
The overarching theme from these ongoing dialogues in academia, the media, civil society, and development partners suggests that digital health, artificial intelligence (AI), and other frontier technologies will accelerate the attainment of universal health coverage (UHC). There is no doubt that new technologies using data can help accelerate quality, affordable, accessible health care for all.
However, the current approach and dialogues are focused on data collection and introducing digital health solutions without considering the needs on the ground. What is the state of data collection infrastructure and digital health policies in Lower middle-income countries? On what basis do we promise all the benefits of digital health and data when many of these countries either have no or outdated policy guidelines and in some cases lack the technical capacities to understand the fast pace digital evolutions.
Do we instead focus on supporting countries to put in place long-term digital health policies based on specific needs or continue with silo working where each international organization intervenes in Lower middle-income countries with their mostly expert-designed digital health projects, which wraps up when there is no more funding?
The current approach seems to follow the latter module in the efforts to harness the benefits of digital health technologies. We must learn from how silo working failed us in the Millenium Development Goals (MDGs) and get things right. Before rushing digital health interventions in Lower middle-income countries, a national policy document needs to identify a primary vision, key national priorities, objectives, and indicators to guide any digital health interventions from the government or international organisations.
Our goal must be sustainable impact and to ensure that new technologies benefit everyone. Whatever the starting point, ask the following fundamental questions before deploying digital health solutions.
Without these and many other foundations, the current speed of introducing digital health interventions is likely to fail in the long term.
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
Build fully customizable data capture forms, collect data wherever you are and analyze it with a few clicks — without any training required.
Easily build a medical form, collect data securely from your smartphone or browser and analyse it with a few clicks.
Africa is continuously touted as the continent where technology will shape the future of healthcare over the coming decades. But on what policy basis will such achievement be made? As we experience the current pandemic, we see the rush to introduce digital solutions as a means of strengthening healthcare provision for the most vulnerable, but to what end? According to the World Health Organization's Global Observatory for eHealth, not all 54 African countries have a national eHealth policy or digital health information architecture. The few countries with strategies either have them outdated or do not have useful implementation timelines and budget support.
Any digital health interventions in African countries should first seek to support digital health policies through a multistakeholder approach. Where policy guidelines exist but are outdated, stakeholders must support reviews to ensure the policy document addresses the fast-paced development of technologies. Only when policy documents are in place can we confidently begin conversations around harnessing digital technologies for sustainable health outcomes.
Beyond policy documentation, there is the need for implementation frameworks and accountability measures, which should have room for periodic review of digital health policies to match the pace of evolving digital space.
Transform Health is one of the leading coalitions dedicated to achieving universal health coverage in the digital age. In their campaign to collaborate with individuals and communities who benefit the most from digital health transformation, they seek to support and invest in health strategies. The coalition believes in the fundamental approach that for digital hearth intervention to be effective and sustainable; it must be fully integrated into a broader health system and aligned to agreed health strategies and policies.
In their soon-to-be rolled-out campaigns in some selected Lower middle-income countries, the coalitions aim to organise advocacy around national platforms that will work together to influence their governments and others to bring about the changes identified in their national strategies. The underlying approach is working within a national strategy or supporting to create or design one. The current haste to collect massive data and export digital health technologies to countries where systems are not ready to receive and integrate them is not sustainable.
Countries must be guided by evidence and policies to establish sustainable harmonised digital policies and systems, not fascinated by going digital for the sake of it.
While digital technologies and data present opportunities to achieve universal health coverage and strengthen health systems, countries must be supported to manage their digital health experience through a policy framework that enhances digital health services' quality and coverage and reduces inequities.
Stronger political will and concerted action are needed at the country level to initiate such policy processes where all stakeholders and communities, particularly marginalised and under-represented groups, are involved.
Digital health interventions should also work with health training institutions to incorporate these technologies at the training level. The early introduction and exposure to e-systems will create a strong foundation even for future e-health solutions.
Without the needed policy framework to guide investment and coordinate digital health interventions in low and middle-income countries, we risk repeating the same mistake of a multiplicity of pilot projects that will fail to make it to scale.
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