Taking Action

Mobile data collection in the fight against COVID-19

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Tiago Beck's profile picture
Tiago Beck
on
Mar 16, 2020

Dear Diary,

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.

Sincerely,
The elephant in the room

Editor's note: Italian follows English.

The world is currently battling with the biggest challenge of our generation. The novel coronavirus (COVID-19, also called SARS-CoV-2) is responsible for a sudden and unexpected halt to normal life. This temporary or permanent interruption to work, research, and education has led to a time marked with uncertainty. While maintaining physical distance, we still need to work together to solve this and restore normality to which we have grown so accustomed. 

Teamscope was founded for the purpose of enabling researchers to easily collect secure, reliable, and high quality data everywhere. This ability has never been more critical than now. As COVID-19 continues to bring the world to a standstill, Teamscope is moving forward to assist the front lines in collecting vital data on this virus. It becomes clear how powerful timely data collection is, and how otherwise challenging it is to rigorously collect information in demanded, and often stressful, situations. 

In a time of high resource constraints, the small computers in our pockets suddenly become fundamental instruments in understanding this global crisis. Securely collecting and sharing accurate data on COVID-19 cases helps not only the researchers but can assist overwhelmed health care systems in planning and distributing vital and inadequate resources.

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.

Odinaka Kingsley Obeta

West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion

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Early investigations protocols

The World Health Organization (WHO) has created a case report form (CRF) that governments and research centers can use to collect data on new cases. The clinical data collected with this form will be important to improve case definition, understand the epidemiological characteristics of COVID-19, quantify the spread, frequency and the impact on communities.  

This COVID-19 form is available in the following link.

The WHO is vital in the global effort on restricting the impact of this crisis. While previous epi- and pandemics have relied on pen and paper tools to track cases, electronic data capture systems now result in less human error, it enables less necessary human contact, and ability to validate and share the data among hospitals, regions, countries and continents. This development itself plays a fundamental role in protecting researchers and medical professionals in their efforts to hem this virus.  

Capturing COVID-19 data with mobile forms

The technological infrastructure of the world's majority of healthcare facilities is sadly highly limited and while the amount of computers for collecting data on COVID-19 cases will not increase exponentially, health care workers around the world already carry with them suitable mobile data collection devices - their mobile phones.

Teamscope is proud to facilitate the usage of the COVID-19 case report forms in our platform. Researchers can now benefit from validated and already set up COVID-19 CRFs in a secure, and offline data collection environment, and benefit from the data visualization capabilities already included in Teamscope.

Since last week, Teamscope has already been assisting the Italian Society of Infectious Tropical Diseases (SIMIT) in the fight against COVID-19 in Italy. Within a few days SIMIT has launched our mobile application in 41 hospitals across Italy and will be managing their COVID-19 data on the Teamscope platform.

Conclusion

Epidemiological data is what allows us to connect the dots. At this point, the dots of COVID-19 are spread out with apparent chaos and so identifying and tracking as many cases as possible will clarify this entropy and help to shield high-risk areas. With the dangers of COVID-19, it becomes clear how data can save lives. 

Researchers that wish to use Teamscope as part of their study on COVID-19, you may reach out to our support team (support@teamscopeapp.com).

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In questo momento il mondo sta affrontando la più grande sfida della nostra generazione. Il coronavirus (COVID-19, chiamato anche SARS-CoV-2) è responsabile per l’arresto improvviso e inaspettato della vita normale. Questa interruzione temporanea e a volte perfino permanente, del lavoro, della ricerca e dell'istruzione ha contribuito a un periodo segnato dall'incertezza. Pur mantenendo la distanza fisica dobbiamo ancora lavorare insieme per risolvere questo problema e ripristinare la normalità a cui siamo così abituati. 

Teamscope è stata fondata con lo scopo di consentire ai ricercatori di raccogliere facilmente dati sicuri, affidabili e di alta qualità ovunque. Questa capacità non è mai stata così fondamentale come adesso. Mentre il COVID-19 sta portando il mondo ad un punto morto, Teamscope continua ad aprire nuove frontiere nella raccolta di dati vitali su questo virus. È evidente quanto sia potente e tempestivo questo processo e quanto sia impegnativo raccogliere rigorosamente le informazioni in situazioni spesso stressanti.  

L'infrastruttura tecnologica della maggior parte dei servizi sanitari globali è purtroppo molto limitata. Mentre le quantità di computer per la raccolta di dati sui casi COVID-19 non aumenteranno in modo esponenziale, gli operatori sanitari di tutto il mondo portano già con sé adeguati dispositivi mobili per la raccolta dati - i loro telefoni cellulari.

In un periodo di scarsità di risorse mediche, i piccoli computer che abbiamo in tasca diventano così strumenti fondamentali per comprendere questa crisi globale. Raccogliere e condividere in modo sicuro dati accurati sui casi COVID-19 aiuta non solo i ricercatori, ma può aiutare i sistemi sanitari sopraffatti nella pianificazione e nella distribuzione di risorse vitali.

 

Protocolli per le prime indagini

L'Organizzazione Mondiale della Sanità (WHO) ha creato un modulo, chiamato Case Report Form (CRF) che i governi e i centri di ricerca possono utilizzare per raccogliere dati sui nuovi casi di contagio. I dati clinici raccolti con questo modulo saranno essenziali per migliorare la definizione dei casi, comprendere le caratteristiche epidemiologiche di COVID-19, quantificare la diffusione, la frequenza e l'impatto sulle comunità.  

Questo modulo COVID-19 è disponibile al seguente link.

La WHO è fondamentale nello sforzo globale per limitare l'impatto di questa crisi. Mentre le precedenti pandemie ed epidemie si sono affidate a strumenti cartacei per rintracciare i casi, i sistemi di acquisizione elettronica dei dati ora comportano meno errori umani, consentono meno contatto umano non necessario e la possibilità di convalidare e condividere i dati tra ospedali, regioni, paesi e continenti. Questo sviluppo svolge di per sé un ruolo fondamentale nella protezione dei ricercatori e dei professionisti del settore medico nei loro sforzi per contrastare questo virus.  

 

Acquisizione dati con dispositivi mobili

Teamscope è orgogliosa di facilitare l'uso dei moduli di segnalazione dei casi COVID-19 sulla nostra piattaforma. I ricercatori possono ora beneficiare dei CRF COVID-19 convalidati e già impostati in un ambiente di raccolta dati sicuro e offline, e beneficiare delle funzionalità di visualizzazione dei dati già incluse su Teamscope. Questa visualizzazione può mostrare i sintomi più comuni e il loro sviluppo, le aree più ad alto rischio e il rintracciamento delle risorse mediche limitate. 

Sin dalla scorsa settimana, Teamscope assiste già alla Società Italiana di Malattie Tropicali Infettive (SIMIT) nella lotta contro COVID-19 in Italia. Entro pochi giorni SIMIT lancerà la nostra applicazione mobile in 41 ospedali italiani e gestirà i dati COVID-19 sulla piattaforma Teamscope. 

 

Conclusioni

I dati epidemiologici sono ciò che ci permette di collegare i punti. In questo momento, i punti del COVID-19 si manifestano in modo caotico e quindi identificare e tracciare il maggior numero possibile di casi chiarirà questa entropia e aiuterà a proteggere le aree ad alto rischio. Il pericolo del COVID-19 mostra quanto sia importante come i dati possano salvare vite umane. 

I ricercatori che desiderano utilizzare Teamscope come parte del loro studio su COVID-19 sono pregati di registrarsi per un account e di contattare il nostro team di supporto (support@teamscopeapp.com).

Translation by Laura Galante.

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.

Sincerely,
No more elephants in this room

Tiago Beck's profile picture

Tiago Beck

As long as I can remember medicine, and in particular neuroscience has been my fascination. I am currently a Research Master of Neuroscience student at the Erasmus Medical University in Rotterdam. I have been exploring countries and medical fields my whole life and it has ultimately lead me to the Netherlands where next to uni, I work as an student researcher at the Erasmus Medical Center and write blogs here and there. And this is just the beginning...

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