Every citizen has an illusion of a utopia within their country. When I started my clinical research training, I aimed to fulfill my patriotic duty by contributing to this utopia.
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 a young medical doctor, I have always thought that being a physician would save dozens of lives in my daily practice.
Progressing through my career, I understood that being a teacher would amplify this benefit from dozens to hundreds.
As I learned the global academia dynamics by the end of my medical degree, I got engaged with the idea of helping millions by contributing to clinical research.
These previous ideas explain how idealism evolves into pragmatism and, finally, into real solutions. We all have responsibilities to develop this utopia collectively from our communities until we scale into a global approach.
Scientists can be the driving force to this change. We should feel fulfilled by having the possibility of helping our communities as if we are helping our family members.
Dominican Republic (DR) is a jewel in the heart of the Caribbean, being an island mostly known as a tourist destination.
This half of the shared island has approximately 10 million inhabitants.
Our health and educational systems are constantly developing, building up an arsenal of human and technical resources to consolidate as a functional alliance.
In 2015 on the SCIMAGO rating, we had 72 citable publications, and in 2020 that grew to 185 documents.
The challenge is doing world-class research in a health and academic system that is still developing and has serious budget issues.
To conduct more clinical research in a still crawling system, the strategy should start with simple studies. Most of the publications made in DR are descriptive evidence with light ethical requirements and are almost entirely observational.
Starting small is essential because researchers should not plan a complex study without previous observational data.
Adapting into the 21st century the way that clinical research is done is a must-have for any country or community that wishes to solve problems with evidence-based medicine.
Although there are good ethical review boards (ERB) nationally, there is a lack in the mechanisms of tangible local regulations to enforce the submission and supervision by ERB’s.
When we take on significant challenges without having a solid foundation, results stagnate. For years, the national congress has debated on making electronic medical data obligatory, with no actual results to date. These are simple steps that serve as an example of essential commodities to do any real research work.
The lack of local scientific evidence leads to a dependency on foreign evidence.
Most of the world depends on external clinical evidence, which should not be harmful. The real problem comes when foreign data is far from what we see locally.
In the DR context, the best examples of those are the viral infection of Dengue and its pediatric management. It is tremendous from a clinical perspective since we have a high incidence of Dengue infections with increased mortality compared with the Latin American region.
On an island of 10 million people, 11 deaths and 863 probable cases in children under 19 so far this year represent both a tragedy and an opportunity.
Another example is traffic accidents which are “endemic”. The DR is the most dangerous country to drive in, and its lack of an effective public health response increases the issue. External evidence on pre-hospital trauma may be helpful but far from matching the local situation.
According to the WHO road traffic accidents report, for every 100,000 people, 42 die in road accidents.
Foreign medical evidence can only give us a sense of where we need to go. We will be walking blindfolded until we don’t have accurate local data on these pressing medical issues.
When it comes to solving these problems, there is no single perfect solution. With budget limitations, clinicians’ limited training in methodology, and many failed attempts on creating “one big” solution, simple data collection solutions like Teamscope shine.
Below are five-way that clinical research can help disrupt how we are delivering healthcare in the Caribbean:
Our clinical work should have no space for substandard practices. We might be working in low-resource settings, but that does not excuse us from taking shortcuts and disregarding best practices when doing clinical research.
If we want to have a vibrant research ecosystem in the Caribbean, we need a solid foundation of clinical rigor.
This may mean swimming against the current and building a thick skin when fighting for fundamental medical concepts. It isn’t easy, but it is in our hands to raise the bar in delivering care.
On one occasion, I had to prepare a research protocol to study the costs and economic impacts of type-1 diabetes from the Dominican patient’s perspective. With our research, we needed to collect data that would allow us to estimate the financial burden that patients with type 1 diabetes have in our country.
I was between two burning ends: If the data collection quality presented any issue, I risked compromising accuracy. At the same time, If data outcomes from both endpoints mismatch each other, the observation would have become worthless.
Clinical rigor requires us to punch consistently above our weight class and try novel tools to ensure that every decimal fulfills the project’s needs.
Digital tools warrant fewer mistakes than using pen and paper.
In low-resource settings, most of the complex work relies on a technical team. It is resulting in a shortage of experts in methods with a surplus of excellent clinicians.
These characteristics are pathognomonic of low-income countries’ health systems, leading us to think of those regions as the most benefited by new digital health solutions.
In the DR, we have highly specialized clinicians who dedicate a whole life to health work.
Like all of us, when we try to be too good at something, eventually, we lack some tools in the methodology area.
In 2020, I implemented a simple data collection tool to follow up on severe asthma patients receiving a new treatment to our healthcare system.
All highly skilled respiratory specialists, my senior colleagues did wonders with the data presented to them by the digital tool I had implemented. For once, they had real-time and high-quality data of how the patients were doing with spirometry, scales, and Quality of Life indicators.
My colleagues could quickly adapt to the treatment results instead of relying on poor pen and paper records or intuition.
There is an installed myth in healthcare that any IT solution will cost you an arm and a leg. Hence, we end up going for what is free, and most of the time, that means pen and paper and then Excel spreadsheets.
That myth today is far from true.
When collecting data with a digital tool, researchers can utilize open-source solutions like Open Data Kit or affordable paid solutions like Teamscope, which starts at €49/month.
Pen and paper data collection will fit within any budget. However, it will also lead to poorer quality data and the need to spend hours manually transcribing the data to a database.
An affordable digital data collection quickly pays itself off.
Doing things simpler is contagious. A ripple effect is seen when one researcher can eradicate analog means and shows his peers how easy it is to collect high-quality data.
If we want a nation of clinical researchers, we need to inspire our peers.
Data from everyday outpatient consult represents the real life of the population. It is like an in-vivo holistic representation of what we are studying, adjusting to the social, economic, and cultural factors.
Likewise, it is our shortcut to a better representation of the universe.
When we integrate e-tools into the equation, we create the infrastructure to collect this data live and reduce the time per patient.
By this point, we have denser, more valuable, and up-to-date data. Serving as a base point of scrutiny and complementing hypotheses for more detailed studies.
Consultations represent the tip of the iceberg of real-time data. Coupled with patient consent, every clinician is sitting on a gold mine.
By creating small but effective collaborative networks, we can make use of all this real-life information. Today, tools like Amazon Transcribe are dedicated exclusively to organizing this information in real-time.
With Transcribe as a tool, you only have to paste the information in the most rudimentary format possible. It takes care of understanding this information by artificial intelligence and creates "relationships.” It will understand the clinical notes for you and make them compatible with any basic analysis format.
Imagine training a medical assistant who will read everything you write, classify it, and understand what part of the message is a disease and a treatment. Doing so is based on what it learns from you and what it knows from its career only; in this case, its career is thousands of previous medical histories.
By processing this data into information, we turn “cheap data” into novel and valuable data. We can use this to contrast foreign data in our environment and create hypotheses tailored to our population.
The most important novelty is what helps you solve local problems.
To exploit all of these benefits, we need to implement heavy-weight critical thinking into the high-yield analysis of this data.
We need to erase the mindset that “low-income countries’ data equals low standard data.”
With our capacity to revolutionize data, we must let go of old practices that adjusted our standards to the bare minimum.
There should be no excuses for substandard work. Any leader should recognize this as a problem of balance in the investment of resources. In the case of developing countries, the solution is to invest in human resources and cost-effective technology in the best way.
One way to look at it is that every action well done, every project completed, and goal fulfilled is a moral obligation to our community. Its continuous improvement is almost a patriotic act.
These tips and tools with good leadership and motivation are the ingredients to become the reference for research in paradise.
To achieve this, we cannot negotiate quality. We must adapt to working in an environment that is friendly to our budget. Likewise, we must make it easy for our clinicians to focus on patients. The goal will be to generate evidence that changes lives without skipping these precautions.
This all sounds distant and idealistic. But the necessary tools are available here and now. Live and improve your process as a clinician, student, methodologist, researcher, or data collector.
There is no limit to what we can achieve with critical analysis and creativity.
If appropriately used in the 21st century, data could save us from lots of failed interventions and enable us to provide evidence-based solutions towards tackling malaria globally. This is also part of what makes the ALMA scorecard generated by the African Leaders Malaria Alliance an essential tool for tracking malaria intervention globally.
If we are able to know the financial resources deployed to fight malaria in an endemic country and equate it to the coverage and impact, it would be easier to strengthen accountability for malaria control and also track progress in malaria elimination across the continent of Africa and beyond.
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
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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