Data Collection

Using smartphone-based PROMs in quality of life research

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Diego Menchaca's profile picture
Diego Menchaca
on
Dec 11, 2019

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

In the world of management there is a mantra that guides all decisions: What is not measured cannot be improved. This principle reminds us to approach our challenges with an analytical stance, replace intuition with hard data and implement measurement techniques that help us know in a timely manner if we are on the right track.

In healthcare, this principle is of vital importance. Health professionals rely on empirical evidence every day to discover new treatments and optimize their decision making in order to save more lives and improve patients' quality of life. 

Measuring a patient's well-being after a treatment is fundamental to understand the effectiveness of that intervention. The value that any therapy has for a patient is given by his or her ability, to the greatest extent possible, to have a normal life. In other words, to be able to move with autonomy, cook, work or play sports again.

When it comes to measuring a patient's quality of life, the best source for that is the patient himself. Now, although we can ask the patient "how are you feeling?", how can we make this measurements continuous and not only at the healthcare provider's side?

The solution to this are Patient-Reported Outcome Measures (PROMs). PROMs are questionnaires that patients can self-complete. 

In this article we will analyze how these measurement tools help close information gaps and quantify the impact that medical care has on the well-being of patients.

Understand a patient’s journey with mobile PROMs

PROMs are a fundamental tool for understanding the before and after of a patient and putting their needs and preferences at the center of their care. While their use was born as a measurement tool in clinical trials, public and private hospitals around the world use PROMs to gain a holistic view of the patient experience.

At a macro level, PROMs are used to evaluate the performance of departments within a hospital and to facilitate benchmarking between different health services for the same specialty.

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According to the researchers Charlotte Holmes and Norman Briffa, University of Sheffield, the quality and usefulness of a PROMS instrument may be measured by the following criteria:

1. Validity

Validity is the ability of the questionnaire to accurately measure the intended outcome, in other words, those who score poorly are indeed in poor health. A PROMs' validity may be measured by three aspects:

  • Content: Are the questions in the instrument acceptable and appropriate.
  • Construct: Is the questionnaire capable of differentiating between different levels of illness, or health, and are patients in poorer health actually scoring themselves appropriately when using the instrument.
  • Criterion: Is the instrument concurrent with previously validated measures and are the instrument's results capable of predicting the outcome after a treatment.

2. Reliability

The results obtained with the questionnaire are consistent when repeated in the same population at different time points.

3. Responsiveness

This criteria assesses whether the instrument can detect changes over a time period that matter to patients.

4. Interpretability

Lastly, this criteria assesses whether the changes that an instrument can measure are clinically significant and is specific to the condition and intervention being investigated.

When it comes to collecting PROMs, it is essential that they are collected electronically and on a platform that safeguards the privacy of patient data. Electronic questionnaires allow to eradicate the common problems associated with paper forms and to generate a user experience that is appealing for patients.

A patient questionnaire on an iPhone

In recent years, mobile data collection applications have emerged, such as Teamscope, which allow patients to track their symptoms directly from their smartphones. Mobile forms, coupled with push notifications, are proven to increase engagement with the patient and thus achieve timely monitoring (Belarmino et al.). 


Putting the patient’s quality of life at the core of treatment

Achieving personalized health care can seem like a titanic task. Especially in high demand health systems. If there's one thing you can start with, is improving the communication channels we have with patients.

Patient-completed clinical questionnaires are a cost-effective tool to innovate the way we communicate with the patient, measure their well-being during and after treatment, and have mechanisms to know if at the end of the day, we are actually on the right track. 



Reference

  1. Williams K, Sansoni J, Morris D, Grootemaat P and Thompson C, Patient-reported outcome measures: Literature review. Sydney: ACSQHC; 2016
  1. Wagle, N. W., Richards, J., Neil, H., Richards, J., Steptoe, S., Steptoe, S. (12 de octubre 2017). Implementing Patient-Reported Outcome Measures (PROMs). 
  1. Belarmino, A., Walsh, R., Alshak, M., Patel, N., Wu, R., & Hu, J. C. (2019). Feasibility of a Mobile Health Application To Monitor Recovery and Patient-reported Outcomes after Robot-assisted Radical Prostatectomy. European Urology Oncology, 2(4), 425–428. https://doi.org/10.1016/j.euo.2018.08.016
  2. Holmes C, Briffa N. Patient-Reported Outcome Measures (PROMS) in patients undergoing heart valve surgery: why should we measure them and which instruments should we use?Open Heart 2016;3:e000315. doi: 10.1136/openhrt-2015-000315

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

Diego Menchaca's profile picture

Diego Menchaca

Diego is the founder and CEO of Teamscope. He started Teamscope from a scribble on a table. It instantly became his passion project and a vehicle into the unknown. Diego is originally from Chile and lives in Nijmegen, the Netherlands.

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