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
Joaquin* was a 79-year-old man, capable of independently carrying out his daily activities while living together with his wife. A year ago, he had a stroke that caused moderate weakness of his left side (hemiparesis) and difficulty in understanding language (aphasia). Directly after the stroke, he received initial care in the intensive care unit for stroke victims, where he stayed for six days, after which he spent 40 days in the geriatric ward specialising in stroke rehabilitation. After this, a primary care centre organised a physiotherapist and occupational therapist to visit Joaquin at home for his rehabilitation sessions. At the start, his usual activities were still met with many limitations as well as his trouble in communicating. However, as these symptoms improved, the rehabilitation team visited less frequently, from almost daily at the start of the treatment to every couple of weeks. The focus of care shifted from physiotherapy and occupational therapy to language and speech therapy. To supplement this help from the rehabilitation team, Joaquin’s wife and home-help service encouraged him to regain independence and resume previously valued activities.
A brief case-study of a stroke victim: adapted from Hussey, P. S., Wertheimer, S., & Mehrotra, A. (2013).
Over the last decade, a pattern is emerging wherein increasing health care costs have a paradoxically low association to health care quality. This discerns the need for change. Perhaps in elements of, or even wholly reforming our current healthcare system (Hussey, Wetheimer & Mehrotra, 2013). While this statement is very bold, more and more countries are shifting their focus from applying a broad standard method of care, to patients under the same umbrella of disability, to instead focusing the care on the patients individual perspectives, their goals and relevant input on shared decision making (Elf et al., 2017). This trend is attempting to move health care service towards a value-based organisation, aiming to improve the patients' outcome without escalating the costs or else delivering equality good outcomes more efficiently.
However, what exactly is a value-based approach? In essence, it is the association between an organisation, performance, and payment of a health service and its achieved outcome. This relates to the patients' implications, whose complex disabilities (as seen in the case study above) or long-term conditions require a multi-disciplinary support approach of various health care professions in various health care services.
The overarching aim, therefore, is to improve the quality of healthcare services while simultaneously improving the patients' safety and cost efficiency. The question follows about how we can improve this quality? How can we integrate multiple healthcare disciplines to collaborate, provide feedback, and standardise outcomes? Ultimately lowering the costs.
"Every hospital should follow every patient it treats long enough to determine whether the treatment has been successful, and then to inquire ‘if not, why not’ with a view to preventing similar failures in the future".
Dr. Ernest Codman, 1914
Michael Porter, Erika Pabo and Thomas Lee, some of the initiators of a value-based healthcare system, believed that “the absence of a robust overall strategy is a fundamental cause of these [healthcare] struggles” (2013). They, therefore, developed a five step-framework focused on sustaining and improving the primary care practice. Firstly, the organisation of primary care should revolve around subgroups of patients with similar needs. Secondly, a team-based approach should cover a full care cycle for each patient subgroup. Thirdly, Patients outcomes and actual costs are measured as a routine part of the care for each subgroup. Fourth, the costs should be modified to include reimbursements for each subgroup and reward “outcome to cost” improvements. Lastly; the patient subgroups primary care teams should be integrated with relevant specialty providers. (Porter, Pabo & Lee, 2013)
This proposed strategy is no longer theoretical, the Karolinska University Hospital in Stockholm in transforming their healthcare to this value-based system. It is focussing on the patients' experience of his or her cycle of care while making sure to adhere to well-defined standard outcome measurements. This standardisation is central to a cogent analysis of the care provided (Porter, 2008). You cannot improve on something if you do not know the results of it.
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
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The value or quality of care should be defined as “the patients' outcome achieved relative to the amount of money spent” (Porter, Pabo & Lee, 2013) and needs to be measurable. Either as an individual measurement or a composition of several that are taken throughout the cycle of care for each patient. These can be based on the health status achieved, the outcomes related to the service itself (experience-based measure) or the sustainability of the care (how long does the patient maintain the health improvements). Previous research done by Tistad et al. in 2012 have however shown a disparity between the outcomes measures defined by health care professionals and those most relevant or desired by the patients themselves. Perspectives and goals differ between the two. Therefore, to “ensure universal, consistent and fair measurement” the outcomes need to transcend the entire cycle of care, including complex conditions and the multidimensional care that is needed.
The reality of this, however, is questionable. The potential complexity of such a cycle requires incredible amounts of data on patients' healthcare contacts and their healthcare activities. So how can this be achieved?
The value of mobile applications in healthcare, such as Teamscope, is a development towards improving the quality of care, increasing the patients' satisfaction, safety and convenience while ultimately reducing the time and costs. Mobile data collection is now a growing and necessary part of a value-based healthcare system (Ventola, 2014). These technologies reduce the simple yet consuming aspect of treatment and allow the specialist to have more time with a high-value treatments (Williams, 2012). Teamscope, a mobile data collection app enables not only the doctor to collect and analyze clinical data but also the patient to report their symptoms and treatment outcomes. Teamscope can act as a central hub of information, with patient recorded data such as blood pressure, blood glucose, heart rate, and many others, that can be transmitted directly to their appropriate primary healthcare team instantly. This mobile apps provides real-time statistical analysis to see the development, improvement or deterioration of certain conditions. It can further monitor potential side effects leading to a fast patient-specific treatment. All the while being completely mobile.
This gathering, compiling and analysing of patient-specific data is essential in guiding individual value-based decision making. The flexibility and adaptability of such apps for both the patient and the primary care team will guide, and I believe ultimately lead this transition from a “one-size-fits-all” treatment to individual value-based outcomes.
*name has been changed
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