Data Collection

How self-reported data helps patients track and improve their health

Nov 12, 2018
Data Collection

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

Recapping on Patient-Reported Outcomes

In clinical research, outcomes are ‘any report on the status of the patient’s health condition that comes directly from the patient’ (FDA 2009). Outcomes are a coherent foundation in establishing treatment benefit since they capture concepts identified with patients’ symptoms and signs or a facet of functioning related to disease status. (FDA 2009)

Patient self-reported data has become progressively imperative in clinical preliminaries. Trials such as mental health, sleep deprivation and pain highly depend upon patient self-reported data as the primal endpoint to demonstrate drug efficacy (B. Tiplady & B. Byrom 2016). In the past such data have been collected using paper diaries and questionnaires issued to subjects. Health professionals have become increasingly mindful of the constraints of using paper diaries to record patient outcomes such as poor data quality and security. Hence, there is a developing enthusiasm for patient reported outcomes data using electronic platforms (ePRO). Electronic PRO provide more and better quality data than the conventional paper diaries that ePRO is rapidly substituting.

Some outcomes like blood pressure, blood glucose, body weight can be measured impartially., However, the patient knows best when it comes to subjective outcomes. For example, your doctor cannot gauge the level of pain except by asking you or by interpreting your behaviors.In spite of the fact that we may sometimes wish otherwise, we live inside ourselves and our experience is in a general sense individual. We are in this way the immediate best source for how we are feeling at any given time (Steven Raymond, 2010).

"If you want to know what is happening to the patients, why not ask them?"

- Dr Brengt-Erik Wiholm

In our article on patient reported outcomes we discussed how such electronic platforms can benefit clinical research. However, the patient is also not left empty handed here. The patient can also track their own health habits. This is advantageous in various ways and it reinforces behavior change as well. With technological advancements, portable gadgets like fitness trackers, smartphones and tablets that monitor our signs, symptoms and other health habits are now a dominant fad, but they are also vital in improving individual experiences. The concept behind these gadgets is that one can collect health data anywhere, on a regular basis, track changes and patterns and at times consult a doctor. Many portable gadgets are still been developed, however the possibilities are self-evident, particularly for individuals with chronic conditions such as hypertension and diabetes. The capacity to send your data to a doctor stretches the possibility that the progressions for complications will be identified in time. Some gadgets are even intended to alarm doctors when the information demonstrates a potential threat, empowering doctors and nurses to respond in time and avert complications or even deadly situations.

"Medical research could greatly benefit from these 'real life' data, particularly since participation rates in observational studies have been declining for the last two decades."

- Tom van de Belt, PhD - Radboud UMC

Why you should track your health

Personalizing medical treatment is a very promising idea. But, most work today spotlights on genetics and is rarely backed up by data on individual behaviour, diet, physical activity, mood or environment. A primary effect of ePRO is that it underpins solid and precise data sources directly from the patient. Such dependable proof of self-reported individual experience is contemporary. We would now be able to assemble basic experience as well as an individualized perspective of therapeutic action. For a long time people have wanted to take control of their health. Being able to do so empowers patients and improves health outcomes. Patients being involved in their health decisions has enhanced control of diabetes, better physical functioning and improved patients' consistence with preventive activities (Arnetz J.E et al).

Formerly, you could introspect and observe but you didn't have an organized evaluation, validated systems or versatile content. ePRO resembles a psycho-behavioral two-way telescope that reveals to us reality of our experience. ePRO offers researchers the opportunity to collect and observe experimental measures and is a podium for discovery of individual experiences and more importantly, the essence of changes in individuals over time. But what does the patient gain from such a system? Monitoring your health is not only vital to those already affected by diseases but also to healthy individuals who intend to keep it that way or even become healthier.

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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Without tracking your health, it is difficult to quantify how much progress you have or have not made and if there are any changes that you need to incorporate in your lifestyle. You can remove the mystery by keeping electronic diaries to raise awareness of your actions which could lead to more healthy decisions. Regularly making the same choices strengthens behavioral change in your life until the point when it turns out to be a habit. Once you've been tracking your progress, you build a historic overview of your health. This information will enable you to see more about how your body responds and enables you to settle on more informed choices about what to change to boost progress. Furthermore, you will get to learn more about your body and focus on choices that work for you. Tracking your health can boost your motivation while you create sustainable, healthy habits. It reveals what you're doing well and when you need to make changes.

The Quantified Self (QS) movement

In 2007 Gary Wolf and Kevin Kelly started the quantified self movement. QS also known as ‘lifelogging’, is the use of technology to acquire data on aspects of a person's daily life. Wolf defines QS as "self-knowledge through self-tracking with technology". Today the global community has over a hundred groups in 34 countries around the world, with the largest groups in San Francisco, London, and Boston having over 1500 members each.

QS event in Amsterdam (Wikipedia)

Every month Quantified Self enthusiasts meet up around the world in a show and tell format to share their personal tracking experiments and expand their knowledge of themselves and their health. Although the idea of self-logging is not new, the technology that makes this simple like fitness trackers, Apple Health and Google Fit allow anyone today to easily become a researcher of their own health. The number of things one can track is interminable and ranges from diet, sleep, mood, pulse oximetry, blood pressure, and physical activity to name a few.

How you can use Teamscope to track your health

Teamscope offers an affordable and offline mobile app that can help you track your health  on your smartphone. Here’s how:

1. Custom form creation:

You can design your own forms with Teamscope’s easy-to-use interface. Users can track whatever they want. From blood pressure, mood, eating habits to the number of push ups they can do. The choice is yours.

2. Collect data anywhere on your mobile device.

Teamscope mobile app is offline-friendly; your data can be collected and stored without internet connection and synchronized once you gain a connection.

3. Analyze data and build personal health dashboards.

Teamscope not only allows you to collect data, but ensures that your data is actionable. You can establish your own question and, use our web application to automatically create and view graphs in real time.

4. Collaborate with your doctor.

Invite your doctor to view your data and take part in your own health decisions. This can be useful because it makes it easier to communicate problems with your doctor when needed and also lead to  individual value-based outcomes.

5. Keep your data safe with Teamscope.

Data on-transit and at-rest is encrypted to ensure your data is protected at all time. All users possess a unique username and password to authenticate visibility of their individual data. Timeout is activated to sessions after a limited time of inactivity after which one requires a four-digit code to regain access. This ensures privacy and confidentiality of your data.

Track your health with our 30 day free challenge

Are you curious on how you could use Teamscope to track your health? We have a free 30 day challenge for anyone interested in using Teamscope to better understand their health. Internally we use our platform to track our Daily Mood Charts and gym performance.

Sign up for a free 30 day account here.

What is Teamscope?

Teamscope is a secure and easy-to-use mobile platform for research data collection. Build your forms, invite your peers and analyze your data in real-time.

References

  1. Arnetz JE, Almin I, Bergström K, Franzen Y, Nilsson H. Active patient involvement in the establishment of physical therapy goals: Effects on treatment outcome and quality of care. Advances in Physiotherapy. 2004;6(2):50–69.
  2. Brian Tiplady, Bill Byrom ePro: Electronic Solutions for Patient-Reported Data 2016 CRC Press
  3. Food and Drugs Authority  website
  4. Gary, Wolf. "QS & The Macroscope". Antephase.com. Retrieved 21 March 2014.
  5. Quantified Self Institute: https://qsinstitute.com/about/what-is-quantified-self/
  6. Steven Raymond. The patient’s viewpoint: Impact of ePRO in Clinical Research. 2010 ePRO: Electronic solutions for patient-Reported Data
  7. Tom van de Belt, PhD. Everyone can become a researcher! https://www.linkedin.com/pulse/everyone-can-become-researcher-tom-h-van-de-belt-phd/

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

Deborah Maufi's profile picture

Deborah Maufi

I'm a business development specialist Teamscope. I enjoy helping our users do more and better clinical research. I'm a non-typical medical doctor and an above average board game fanatic.

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