Taking Action

The future of [mobile] resources, research and rights

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Tiago Beck's profile picture
Tiago Beck
on
Nov 19, 2018

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

It was a cold Friday morning in Amsterdam, the picturesque canal houses reflecting in the waterways, a thin sheet of fallen golden leaves covering the cobblestone roads. More and more people made  their way into the Rode Hoed, a refurbished 16th-century church, that today would house ethicists, lawyers, doctors, and med students. The discussion of the day revolved around the ethical dilemmas in global health and the necessary changes in resources, research and rights to create a universal level playing field.

Understanding that “We cannot escape ethical dilemmas” was the guiding thought throughout the day: realising that by working in the (global) health sector, choices have to be made that often cause ethical dilemmas. This can be related to the distribution of medical, human or financial resources, or by looking at the obligations in research, the social responsibility within data-driven medicine, or lastly the importance of the right to health, allowing for available, accessible, acceptable health care of high quality.

Resources

There are ethical dilemmas at all levels of health care, exacerbated by the inequitable distribution of resources. Differences between countries, such as life expectancy, limited health budgets, temporal or continuous physical shortages of resources such as donor organs all lead to the challenge of meeting the medical need for all (Krütli, Rosemann, Törnblom, & Smieszek, 2016). There are structural, financial and social causes that further this divide between countries.

On this topic, Dr Kluge said: “When resources are limited, and the demand exceeds the supply, then allocation becomes a problem” (2007). He believes the discussion should not revolve purely around the material senses of healthcare resources, but also the human aspect, the nature, role and moral status of the healthcare professions and how this has implications on the ultimate allocation. He suggests three models: the Hippocratic model is based on the idea that the effort of the physician should be directed towards the best interest of his/her patient. This is very much a “hands-on” level and demonstrates that the allocation issues arise because of individual need. The second model he suggests is the Social model, in which social considerations are highly relevant as healthcare occurs in a social setting. However, this means that more than one individual has a need and that competing needs will have to be balanced. Lastly, the business model is suggested; wherein the physicians are seen as professionals and therefore have a right to give some weight to entrepreneurial considerations. However, these entrepreneurial concerns should be balanced with individual and social obligations (Kluge, 2007).

The further interplay between human and financial resources was one of the main items of discussion at NVTG. Dr Ann Phoya addressed these health challenges, specific to her situation in Malawi. Her main statement, that “removing financial barriers without proper staffing levels does not ensure access” was vital to understand the balance that needs to be struck in managing these limited resources. Adequate human resources are needed as a work overload can lead to poorer quality of care. The provision of good/quality patient care and avoiding harm is the cornerstone of ethical practice.

Research

The road to better medical care is paved by healthcare data. The analysis of health outcomes and techniques guides the way to more value-based healthcare, and as data technology becomes cheaper and more widely available - it has the potential to help many more people. However, while big-data technology may wear the mask of a social neutraliser or offer a solution to levelling the healthcare discrepancies, it also carries the potential to create deeper divisions between countries.

These divisions are created on the basis of the theory of “knowledge gap” - “people who already have better information are also better at getting more information, even if that information is in theory universal and available to all.” (Tufekci, 2018). This pattern is seen in all sorts of fields, and the lesson is universal; the increase in inequality is not purely between those that can and cannot afford these new methods, but also amongst those that can take advantage of them and those that cannot (Tufecki, 2018). We, therefore, find a solution that maintains this universal access, yet promotes availability, acceptability and understanding of these new methods early on in all regions. With ever-increasing data-driven medicine, this accessibility is increasing. With simple-to-use mobile apps, such as Teamscope, it allows for the collection of data for clinical studies even in offline or remote areas, increasing the reach of such new methods.

However, with power also comes great responsibility and obligations. These ultimately aim to increase knowledge for the public good, through help or research as well as increase the responsibility of the healthcare workers. For example, for clinical trials, the obligations are threefold. During the pre-trial stage: responsiveness and community engagement is essential in providing effective local care or research. During the trial, the researchers must provide a high standard of care and ancillary care. Lastly, post-trial responsibility requires continuous access to the proven effective treatment, transitioning to care and capacity strengthening.

The latest techniques and methods provided through research have the potential to lead to better health outcomes - and over time, to become cheaper and more accessible.

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Rights

Case Informed Consent – South Sudan

"A 17-year old woman is brought in at the labour ward by her sister. She is gravida 1 [=her first pregnancy], full term and presenting with severe (antepartum) blood loss. The ultrasound shows a placenta praevia [=the placenta is growing at the lowest part of the womb and covering all or part of the opening to the cervix], which is an absolute maternal indication for a caesarean section. The woman refuses an immediate caesarean section because she wants to have permission from a male family member for the intervention. It is a local habit in South Sudan that women are not allowed to make decisions about interventions or blood transfusions by themselves. Despite the medical team insisting on an immediate caesarean, the woman refuses the operation without the permission of her husband. Even when the medical team explains that she and her baby’s life are at risk and the bleeding could be fatal for both of them. However, the baby’s heart rate is still stable, and the bleeding is not life-threatening at that moment."

(Case study from South Sudan - with permission from Prof. Dr J (Hans).J.M. Van Delden)

The refusal of a caesarian section in the face of obvious tragic maternal and perinatal consequences is an ethical and legal dilemma with which many developing countries are continuously struggling.  The underlying societal issues guiding the decision often encounter resistance from the medical obligation to save lives.

The discrepancy comes about from the conflict between two ethical standpoints. On the one side, the core guiding principle is human dignity. We must respect the right, protect the right and fulfil the right of every person and their individual decision. However, on the other side, the Dutch medical oath (2003) pledges every doctor to “practise the art of medicine as well as [they] can for the benefit of [their] fellow man. [They] will take care of the ill, promote health and relieve suffering.” This leads them to try their utmost to help people, convince them of the necessity of a medical intervention to ultimately save their life. Doctors should aim to further the availability, accessibility, acceptability and quality of health care.

The woman in the case was lucky however as  “The operation is postponed, and her sister brings her uncle who can give permission. After half an hour, the uncle gives his permission, and the caesarean is performed. Both mother and baby are doing well after the caesarean.”

Data Rights

With the emergence of data driven medicine, the ethical dilemma now not only encompasses a person’s physical rights towards treatment, but also the right of their data usage.” . With increased data collection, privacy, confidentiality, and control of data is now an area of significant concern. There must be a balance between an individual’s desire for privacy and their desire for good evidence to drive healthcare, which may sometimes conflict. Mobile apps and wearable devices create new opportunities for personalised health (tailored care for the needs of the patient) while at the same time large volumes of their data are created, shared, and sold (Kostkova, 2016).

Therefore, a responsible way to collect big (open) data for healthcare while at the same time respecting the patients' privacy and confidentiality needs to be developed. This will require public engagement and a dialogue between the public, private sector and policymakers to understand the data usage for research and thus the public good. It demands clarity and transparency such as regulation, enforcement and information for the public understanding. New regulatory frameworks, data structures and big data analytics should aim to deliver solutions that benefit individuals, practitioners and healthcare professionals at all levels while operating under licensed registries for safe personal data storage and analytics. Lastly, training and education, for both citizens and healthcare professionals should enable future work to incorporate ethical skills within the best computing systems. (Kostkova, 2016) This will be the only way to respect and protect the individuals right while at the same time staying true to the responsibility of making healthcare more available, accessible and acceptable.

The future of (mobile) resources, research and rights depend upon an equitable distribution, a socially obligated method of research and a focus on the rights to health and privacy. This goes beyond simple fairness. This is what a healthy society looks like.  



Gratitudes

A big thank you to the team at NVTG for organising this event, in particular to all the speakers and a special thank you to Prof. Dr. J.J.M. Van Delden for providing his presentation for the creation of this article. Thank you also to the team at Teamscope - it was a great event.


References

  1. Kluge, E. H. W. (2007). Resource allocation in healthcare: implications of models of medicine as a profession. Medscape General Medicine, 9(1), 57.
  2. Kostkova, P., Brewer, H., de Lusignan, S., Fottrell, E., Goldacre, B., Hart, G., ... & Ross, E. (2016). Who owns the data? Open data for healthcare. Frontiers in public health, 4, 7.
  3. Krütli, P., Rosemann, T., Törnblom, K. Y., & Smieszek, T. (2016). How to fairly allocate scarce medical resources: Ethical argumentation under scrutiny by health professionals and lay people. PloS one, 11(7), e0159086.
  4. Tufekci, Z. (2018). Data-Driven Medicine Will Help People — But Can It Do So Equally?. Retrieved from https://www.nytimes.com/interactive/2018/11/15/magazine/tech-design-inequality-health.html

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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