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
When organizing collaborative work alongside colleagues in another country such as in our recent trip to Neiva, Colombia, it can feel like we are racing against time that is constantly moving faster. First, we are tasked with quickly assembling a team that best fits and can work together in terms of local and technical needs, as well as contextual knowledge and understanding. Once individual team members are selected, we work to define the structure and goals for our time together. We then focus on determining the materials and resources we would need to accomplish our goals, and a plan for implementation. In this context, our team began to organize and assemble six months in advance for our time in Neiva, a timeline that back then felt like an eternity.
Our goal was to work collaboratively between the lab and clinic together with local physicians, health professionals, and community partners in an effort to assess the ophthalmic impact or damage to the eyes of children whose mothers had confirmed exposure to Zika virus during pregnancy. We also wanted to learn more about the experience of women who were impacted by this virus in terms of daily life and support, as well as to work with community partners in providing needed resources to women and families. Relationships with collaborators in Neiva had been built over many years especially between researchers from Venezuela, Colombia, and Brazil, which later showed to be a crucial component for the feasibility and orchestration of our time together. This also allowed for the sustainability of care and attention for the patients and towards shared capacity building.
An ophthalmic questionnaire was developed based on previous studies seeking to assess ophthalmic outcomes related to exposure to the Zika virus. In acquiring data on daily life and support we chose to ask the World Health Organization WHO’s quality of life survey, adjusting and improving for relevance, context, and local nuance. Both our clinical assessment and the quality of life survey were to be undertaken in Spanish, and collected by both myself and local collaborators. As we sent our materials to the local ethics committee for approval and thought about how we would administer and collect the data, a common question followed: should we use traditional pen and paper or create our surveys through an online platform?
When making this decision we thought about whether we would have reliable internet connection at the clinic as well as which method would be less time consuming both in its design and implementation. First, pen and paper was considered, which always has the upside of being a reliable way of acquiring data. It (pen and paper), however also has the downside of requiring the later transcription of data and also includes challenges related to data loss and privacy. In the past I had used other platforms for administering surveys, and at that moment I needed a solution and service that could quickly support me in the creation of the survey online and acquisition of data. I had previously been exposed to Teamscope as a collaborator but had never used the platform for my own public health work and research. I knew that Teamscope had the capacity to build surveys from scratch and fit to need, provided the safety of a secure server as well as had the capacity to collect data even when offline or in remote areas. So I reached out to Diego at Teamscope only a week prior to our departure to Colombia in the hopes that we could work together in a very short turnaround time.
To our luck Teamscope was readily available to support us in our short time frame and got straight to work in creating our surveys through their platform, creating individual logins for each researcher, and a plan for feedback and testing prior to departure. Teamscope touched base with us and guided us every step of the way, through testing prior to departure and making improvements to the platform and our survey. Additionally, Teamscope also supported us in making improvements to the survey itself with expert suggestions on language and clinical data collection, like where it might be best to include a Yes/No response, and where to create dropdown menus, for example.
When we arrived in Neiva, Colombia after a long flight, and 6-hour car ride to clinic location, Teamscope once again touched base with our research team to double check what our internet connection looked like, and for any last minute changes. When we arrived at the clinic and began collecting data, Teamscope again was available to support us if we had any issues capturing or saving our data even when offline. During our time in Neiva we provided services and collected data through Teamscope in what felt like a seamless experience. For our clinical ophthalmology data was captured using an encrypted computer, and for the quality of life survey we used a handheld iPad on Teamscope’s secure platform.
By using Teamscope our team was able to accomplish the work we set out to do, removing the time burden of paper and pen acquisition of data and transcription, as well as the time it would have taken to create our own surveys and implement using a different platform. In this way, using Teamscope allowed us to focus on the important work of providing services and resources to our patients and our work together between the clinic, the lab, and community partners.
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