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
As much of the world continues to grapple with COVID-19, one fact has been made painfully clear – the world did not take pandemic preparedness seriously enough.
While mechanisms were in place to slow the spread of outbreaks, COVID-19 clearly demonstrates how vulnerable our health care systems really are. Pandemic response efforts have ultimately been undermined and weakened by poor coordination, inadequate resources, and rampant misinformation. Even in countries once hailed as leaders in pandemic preparedness, response efforts have ranged from haphazard at best to catastrophic at worst. And in the end, it’s been ordinary citizens, many of whom were already society’s most vulnerable, who have paid the ultimate price with their lives.
A time will come after health workers discard the last of their makeshift face shields and the final COVID-19 patients are discharged from hospitals when experts can clearly reflect on what went wrong and how to build a more resilient future. But in the meantime, critical lessons are already emerging – and must be analyzed in the midst of the ongoing pandemic – to improve response efforts further.
One of the most critical emerging lessons is the need for better data provided through robust health information systems. A health information system (HIS) is a collection of diverse tools including surveillance systems, electronic and mobile health records, health databases, and qualitative and quantitative epidemiological data.
A recent study, published in the Disaster Medicine and Public Health Preparedness, pulled together new recommendations from Ebola outbreaks and the COVID-19 crisis to optimize pandemic preparedness through HIS. This is timely work - the findings come at a decisive moment when concrete, clear, and accessible information on COVID-19 has been woefully inadequate, including major gaps in national and global databases and a lack of sex-disaggregated data.
The authors make a case for scaling up robust information collection platforms, emphasizing the need for better data to catalyze response efforts in real-time. Three areas of focus are identified for optimizing HIS: governance, health systems infrastructure, and community engagement. While shoring up any one of these can already vastly improve COVID-19 response, the authors push for investments across the board, noting that each domain can cyclically strengthen the others. This cycle means optimizing HIS leads to more resilient health systems, while strengthened health systems provide the foundation for resilient HIS.
In short, investing in health information systems is a win on all fronts.
Data can bolster pandemic preparedness by strengthening governance for health systems. In health emergencies, governance “refers to the political processes and mechanisms that steer response and resilience efforts.” We’ve all witnessed the disastrous impact of careless coordination and incompetent leadership during COVID-19 response. The consequences can be devastating, setting recovery efforts back by months.
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
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Robust mechanisms to oversee cohesive public health programs rely on “up-to-date information to enable proactive decision-making, rapid resource mobilization, and effective risk communication strategies.” Meanwhile, it’s equally clear that a lack of strong HIS (and the resulting gaps in data) can weaken necessary leadership by undermining the ability to make critical and timely decisions.
Furthermore, crisis contexts like Ebola were often characterized by highly-politicized agendas and complex networks of global actors; we see this pattern replicated during COVID-19. Challenges in sharing frontline data transparently weaken rapid response and international solidarity. Decisions at all levels of governance, from community contact tracing to national surveillance to global disease monitoring, are routinely undermined by data siloed across fragmented HIS.
Recommendations to strengthen Governance & Coordination:
Poorly-resourced health systems are another major issue that’s taken center stage during COVID-19. Health systems infrastructure provides “the foundation and resources for planning, delivering, evaluating, and improving public health.”
The roll-out of the game-changing COVID-19 vaccines has unfortunately spurred a geopolitical race to stockpile reserves. Public health experts and civil society groups have watched in disbelief and disappointment as rich countries bought up as much of the vaccine as they could, leaving low-income countries without access for up to two years. In the end, this leaves all of us vulnerable. Meanwhile, most nations have struggled to provide adequate personal protective equipment (PPE) or efficiently allocate health workers.
Without information on access and delivery to guide distribution, the lack of vital resources leads to skyrocketing cases and deaths, especially in underserved communities. Ultimately, strong HIS are a key requirement for equitably allocating critical vaccines and therapeutics to where they are needed – thus ultimately helping to “flatten the curve.”
Strategies to streamline health systems infrastructure and resources:
Recent Ebola outbreaks emphasized the critical role of community engagement, which ensures individuals and communities are central in public health priorities and action plans. This means open communication between frontline responders, local leaders, and the general public is essential.
However, significant gaps exist in linking people-centered approaches with strong HIS. Local-level data can provide salient information on social contexts, including credible sources of misinformation, disinformation campaigns, gaps in community trust, and key stakeholders with crucial insights on local beliefs, norms, and behaviors.
If implemented effectively, robust HIS can refine “communication that builds trust as well as informs new population-specific community engagement methods.” But without local information, we risk responding with one eye blind.
The path to expanding community engagement & risk communication:
Strong data collection platforms and robust HIS are invaluable tools in the fight against COVID-19. Not only can HIS inform outbreak response, but timely data can generate much-needed evidence to build resilient health systems moving forward. They can improve decision-making by informing governance and coordination. They streamline equitable resource allocation and support primary health care services. They provide innovative solutions to engage diverse communities, fight misinformation, and build trust. Perhaps most important, investing in HIS can be the closest thing we have to a silver bullet for preventing lockdowns and loss of life that eventually lead to economic downturn and instability across the world.
So where do we go from here? Many uncertainties remain about how to best recover and rebuild from the novel coronavirus – how to best distribute vaccines, when to reopen schools and business, who to trust for credible public health guidance – the list goes on. Question marks like these are where clear, accessible, and effective data collection platforms, such as Teamscope, have an important role to play.
We are still largely responding in the dark due to the lack of sufficient information. More work remains to expand data gathering tools for frontline responders, improve sex-disaggregated data, identify underserved and marginalized populations, and link epidemiological statistics with observational and clinical data. Addressing these gaps will curb transmission rates while simultaneously preventing further health and socioeconomic impacts.
Controlling COVID-19 and building a future resilient to pandemics isn’t out of reach – indeed humans have conquered far greater obstacles. But strengthening local, regional, and international health information systems will provide the necessary data to make real-time policy decisions, allocate resources, and inform preparedness plans.
And that is a win for all of us.
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