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
We have heard from researchers that paper forms can be time-consuming with many errors that affect data accuracy, completeness and consistency in medical research. Today’s world is all about technology in everything we do, touch or feel. According to GSMA, 5 billion people globally have mobile devices today, and this is expected to reach approximately 6 billion by 2025. What this indicates is that about two-thirds of the world population own or have access to a smartphone. However, why do researchers still opt for paper Case Report Forms (CRFs) instead of electronic CRFs?
Electronic data capture (EDC) software is a computerized system designed for the collection of clinical data in electronic format. EDC replaces the traditional paper-based data collection methodology to improve data quality, eliminate double data entry and expedite research analysis and results.
Although EDC systems for eCRFs have been around since the 90s, more than 50% of regulated researchers still use paper forms because they believe its cheaper and easier to use. The number is higher (up to 80%) if we include non-regulated studies. This is likely because there’s no need for IT training when using paper forms and of course, the widespread assumption that the cost of printing paper is not as high as purchasing technology devices.
Every researcher needs to consider the following factors before collecting their data:
Since money is a vital influencer of everything around us, it's human nature to choose an option that saves you some. At a glance, paper CRFs seem cheaper since you don’t need license fees, technical training and the expense of just printing forms doesn’t sound so expensive. But the real costs are associated with the inaccuracy and low quality of data linked to paper data collection. Distribution, resolving queries, data cleaning, site visits, filing and storing paper-based data can be costly, time-consuming and minimized or even evitable when a study is run using EDC.
Once data is collected on paper, manual data entry into a database follows. Now, this is a long process that can be tiring and may take months to complete. And it doesn’t stop here! The data must still be analyzed and reviewed before dissemination. A lot of time can be saved when using EDC by minimizing site monitoring, skipping the double data entry process and readability barrier. The data can also be shared immediately with a high level of accuracy enabling researchers to collaborate in real time. Researchers can also analyze their data faster as eCRFs can create real-time reports and export data to statistical tools like SPSS. This is changing, and nowadays, EDC is becoming easier to use without any programming knowledge needed. Teamscope’s point and click interface enable you to build your eCRFs faster, easier and ensures only valid data is entered without any technical training.
Patient data must be secure and confidential. This is research 101. With paper data capture, this can be compromised especially during data transfer. Since it requires manual transportation, paper CRFs can easily be accessed by parties that not supposed to. EDC systems like Teamscope offer strong encryption at all moments and daily data backups.
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With clinical data collection, it is mandatory to follow some standards and regulations. Both paper and electronic data capture must comply with Good Clinical Practice (GCP) and FDA. Data collected must be valid. Achieving valid data is only possible if it's gathered according to your study design. This is difficult with paper CRFs making the data highly erroneous. But EDC eliminates invalid data by alerting the enumerator immediately leaving only valid and reliable data for use. Another factor to pay attention is how to minimize the exposure of confidentiality and sensitive information, and this is achieved by creating granular permissions to define who has access to our study and for what task. This way you can maintain full accountability for your team. Also, data can be accessed by only approved users. Use of passwords, encryption and off-site storage of data ensures that research data cannot be accessed by unauthorized people. This is not the case with paper CRFs which most of the time are either locked in a cabinet with a padlock, or we see them lying somewhere in the office.
We gather data to answer research questions, test hypotheses and analyze results. For all this to be of good quality, feedback is necessary. Why? Because two heads are better than one. Feedback helps improve situations, boost motivation and above all, is a tool for learning. For you to receive feedback, one must share the information they have with others. Hence, collaboration across research teams is vital.
Paper CRFs delay feedback since it might take weeks to months to share data and collaborate with team members. With EDC, data is synchronized allowing multiple research sites to collaborate in real-time and assure everyone is updated and on the same page. What does this mean? Whenever a team member adds a data entry or modifies previously stored record, that change synchronizes for everyone. This way, feedback is received and acted upon faster than with paper CRFs.
Why is multi-centre collaboration beneficial in research?
One major concern about using cloud-based EDC is they require an internet connection. Sites with poor or unstable internet have to make the decision of paper or on-site servers, both are costly. Because of this worry, EDC providers are now extending their systems as Android and iOS applications to support offline data collection which means data can be collected and stored without the need for internet and synchronized once you gain a connection. Whether you are conducting a clinical trial at a hospital or examining patients in a remote village, mobile EDC ’s like Teamscope now allow you to work wherever you need.
No one can oppose the fact that we live in a digital world. Researchers have to be versatile and ready to embrace change. Research is an expensive venture and using EDC makes it less costly and laborious than paper data capture. So what are you waiting for? It’s time for researchers to ditch paper CRFs and migrate to EDC; a less costly option that enables you to collect valid and quality data which can be shared with multiple research teams safely, timely and smoothly.
Teamscope is an easy-to-use, affordable and offline-enabled mobile platform for Electronic Data Capture (EDC) in medical and field research.
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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