Keeping track of our health and symptoms has never been easier.
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
“How satisfied are you with your physical health in the past four weeks?”. Knowing how a patient is feeling, what their symptoms are, and if they experienced any changes is often essential information to healthcare professions and clinicians alike. The use of patient diaries, or symptom trackers, can offer valuable insight into any range of symptoms and assist in making more informed decisions about a diagnosis or treatment based or recognise symptom fluctuations accompanying a new drug.
Depending on the clinicians or the research, self-reported questions on symptom tracking can vary immensely both in detail and time. Doctors will frequently ask their patients to keep a diary for recent health events, such as pain, fatigue and quality of life over the last 24 hours, the previous week, or the last month. The timeline of these symptoms can be analysed together with new treatment regimens or lifestyle modifications to gain valuable insight into a patient’s response.
So what are our options for symptom trackers? How can we also promote self-management from the patient’s side to take more charge of their health? In the past, we have relied on pen, paper, and a good memory. The downsides to these diaries and methods however often lead to low adherence, misplacement, and time consuming analysis. By shifting these diaries to the small buzzing electrical devices we all carry in our pocket, we can remind patients to answer at predefined times, we can create backups of the data, and instantly analyse it.
A digital symptom tracker is a computer software that allows a person or patient to self-report medical events and track what they felt and when it happened.
Traditionally patients have used paper booklets to track their symptoms. Paper logs have many upsides, they work anywhere, don’t require extra devices (beyond a pen), and they never run out of batteries. But this also means they can be misplaced or lost anywhere, without a backup, and the processing of paper diaries and notes also has its obstacles ; interpreting handwriting can lead to mistakes and data analysis is not instant.
To cope with the challenges of pen and paper data collection doctors and researchers have been using digital symptom trackers for decades.
With the advent of the smartphone, virtually anyone carries in their pocket a powerful note-taking device. App-based diaries ensure that entries can happen anywhere, anytime and can be coupled with push notifications to ensure measurements are not missed.
Data security is a crucial feature of these sorts of systems. Although any app with annotation or data collection capabilities may seem fit for tracking our health, there are essential data protection features that must be regarded when using a mobile app for tracking our health.
An example of the standard security features that a health journal app should have is passcode locking. If someone finds a smartphone with medical data, they should enter a passcode to unlock it, even if the smartphone has a general passcode enabled.
Also, the data should be stored locally encrypted. If the device is lost, this will mitigate the risk of someone gaining unlawful access to that data.
Clinicians and patients should look into what standards and regulations the mobile application they want to use complies with, such HIPAA, 21 CFR Part 11 (FDA) and Good Clinical Practice.
One of the benefits that a health journal app has over paper is the ability to visualize the data and share it with others quickly. Not all mobile apps store data in the cloud, some only locally.
Assure that you choose an app that is capable of providing remote access to the data and that even if the device would be lost, the data can be retrieved. If you are doing clinical research, check that the data can be exported in CSV or SPSS and with enough metadata that other researchers could possibly use it in the future.
Logging symptoms is all about capturing qualitative and quantitative data. In practice, this means creating a form with variables and fields. The complexity of your questionnaire will depend on the kind of data you want to collect. In some cases, advanced features might be required such as branching logic (a new page or question appears dependent on the answer of a previous one), automatic calculations, image and video capture.
Make sure the app you want to use will be able to handle the kind of symptom data you want to keep track of.
Making data collection a habit is no easy task, with the many distractions that patients have they will likely forget to enter data. Increasing engagement and adherence can be aided by push notification that remind a patient when to check their blood pressure or answer a set of questions on how they are feeling.
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
Build fully customizable data capture forms, collect data wherever you are and analyze it with a few clicks — without any training required.
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With so many health journal apps out there, we researched the best ones to date. We reviewed them based on user-friendliness, security and suitability for research purposes, and the further services that set them apart.
Teamscope is a secure and easy-to-use data collection app for clinical and field research.
With Teamscope, patients and health professionals can create powerful forms, a.k.a electronic Case Report Forms (eCRF), collect data and visualise it with a few clicks. Patient’s can install the app on their smartphone and use their forms to log their symptoms, habits or any event.
The data is stored securely on the cloud, which makes it simple for a patient’s doctor or family member to monitor the data remotely, visualise with graphs and export it.
One of Teamscope’s strong points is in security and data protection. When a user closes the app and re-accesses it a 4-digit passcode is required, this prevents others from accessing the data in case a smartphone or tablet would be lost or stolen. Furthermore, data is stored encrypted both on local memory on the mobile device and in-transit.
Forms on Teamscope can have reminding logic. These periodic push notifications makes it easier for patient to not loose track of when to enter symptom data.
Features: Reminders, offline data capture, data security
Cost: Plans starting at €30/month. Try free for 7 days.
Availability: iOS and Android
Flaredown is a free web and mobile app (Android & iOS) that helps patients track and visualize their illness, treatments, and symptom triggers so that they can understand how their choices affect their health.
Flaredown is a free web-based and smartphone app (Android & iOS) that helps patients track and monitor their symptoms, medications and conditions, in order to understand the effect of their decisions on their health.
Flaredown collects data in a research-friendly manner that can be used to test real-world therapies and find the best new ones to share with patients worldwide.
One of Flaredown’s valuable features is the ability to schedule reminders. This allows a patient to receive a notification whenever they need to log their symptoms, thus increasing adherence to data collection.
Flaredown allows you to view charts directly from the mobile app to see how your symptoms have fluctuated over time.
Features: Email reminders, database of conditions, data visualization
Availability: iOS and Android
Tally is a mobile app, developed by Treebetty, that allows you to set goals and log your progress.
Tally is easy-to-use and offers a delightful user interface. You can use it for medical conditions as well as for habits and daily planning.
To get started with Tally, patients must create a tracker and set a timeframe for it to be repeated. Tally is free for up to 3 trackers, offers premium features such as passcode protection, export to CSV and multiple reminders for each tracker.
Features: Scheduled reminders, easy-to-use, passcode lock
Cost: Freemium, paid features cost $7.99.
Symple is a symptom journal and health diary app. The app is elegantly designed and easy to use. You may track how you feel, your habits and symptoms and explore your data with interactive charts.
Symple stands out for having the ability to import health data, such as heart rate, steps and sleep directly from Apple Health, giving a more comprehensive overview of your health.
The platform is free to use for up to 5 symptoms, and your data can be exported at any moment to CSV.
Features: Integration with Apple Health, image capture, reminders,
Cost: Freemium, paid features cost $9.99.
CareClinic is a comprehensive self-care platform for tracking symptoms, habits, physical activities, and any custom values.
The platform makes data entry intuitive and straightforward and offers unparalleled health symptom reporting. Patients can discover triggers and factors that influence their symptoms and track if they are on track with their health plans.
CareClinic stands out for having a comprehensive medication reminder solution integrated into the platform. Patients can define what medications are taking the set different reminders for each pill.
The data can be accessed remotely by a physician or family member using the Careteam feature. This gives the patients support circle the possibility to gain visibility to their progress, symptoms and medication schedule.
Features: Remote data access, medication reminders, Care team access
Cost: $9.99/month or $59.99/year
Availability: iOS, Android and Web
Digital health journals make it easier for patients to track their symptoms and share that information with their doctor and support circle. When it comes to increasing the accuracy of that information, our smartphones are a handy device to securely store events and valuable medical data.
Patients and doctors will find an array of solutions in the market today to keep track of their symptoms over time. The fit of each solution will depend on the use case, the ability for patients to quickly learn to use them and the possibility for the data this is collected to be used for other purposes, such as clinical studies.
For the patients themselves, the use of electronic symptom trackers also invites a new level of self-management. They can see how their symptoms change over time, perhaps learn to avoid certain triggers, and ultimately develop the ideal patient-specific treatment together with their health care professional. This development allows patients to (literally) take their symptoms into their own hands.
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