When scaling up digital health interventions, how do we ensure no one is left behind?
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
While healthcare is becoming increasingly digital, its accessibility in developing countries cannot keep up. As long as these nations lack the necessary internet infrastructure, digital skills, access, and education, the incredible promise of new digital health innovations will forever remain a glass ceiling.
Solving this discrepancy, however, is no easy feat, and many questions arise in the process. Specifically, how can we strategically promote and implement digital health technologies? And who has access to the internet infrastructure, can they afford the costs associated with collecting and data? and lastly, do such users receive lifelong training and support to develop their skills and harness the benefits of digital health technologies that are being deployed at such speed?
According to the World Health Organization, the strategic and innovative use of digital health technologies will ensure that one billion more people benefit from universal health coverage. These technologies include the development of data, apps, and tools to assist both patients and healthy individuals by offering guidance about their health and lifestyle. Not only can this lead to affordable, scalable and personal healthcare, but it stresses that everyone has control over their health.
These developments are guided four main principles:
Everyone is different; from their genetic make-up, their medical history, and their experience, and thus what is needed for them to be healthy is also different. For this reason, the process of collecting and analysing data, and ultimately providing digital health advice will also be personal.
Any digital health innovations are worthless if transforming the raw data into advice is riddled with inaccuracies and remains detached from the problem at hand. To this end, valid and reliable predictive models have to be available, which benefit from large health databases, accessible to even the most isolated communities.
Data is of no use if it is difficult for users to collect, access, understand, and implement. While more and more data collection applications are being developed, affordability, user-friendliness, adaptability and accessibility should stand at the forefront of their functionality. Even the ability to operate in offline situations now enables reaching entire communities who are otherwise would be the last to receive the necessary infrastructure.
Most importantly; data must be well protected and secured. Collecting a lot of data, and specifically sensitive health-related information, is associated with a position of great responsibility. Besides ensuring that data is collected cautiously, it is very important to maintain transparency about which data is collected and its ultimate use. Creating and implementing safe digital health technologies is difficult but there are ways to make these solutions more resilient against attackers. Protecting user data must be a high priority and should never be ignored.
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.
Privacy, big data and digital health are inextricably linked, and this association must be upheld for these innovations to be effective and embraced. These developmental principles do more than just protect patients, but rapid technological innovation could also be transformative in achieving the 2030 Agenda for Sustainable Development.
Many frontier technologies have shown great potential to help achieve the Sustainable Development Goals 3, which strives to guarantee health and well-being for all, including a bold commitment to achieving universal health coverage. The utilization of digital technology in the health sector, including electronic data collection applications, such as Teamscope, remote doctor-patient consultations, and mobile applications, has changed how health professionals provide services and how patients receive care. But how can we make this more accessible? By providing affordable solutions that are user-friendly for both the physician and the patient, and that may also function in offline or poor-connection areas. By expanding the reach of these digital healthcare solutions, we are moving closer to guaranteeing health for all.
We need to ensure, however, that no-one is left behind when scaling up digital health innovations. But how realistic is this? What are the biggest changes we can make to even the playing field? One clear candidate is the internet. The power of the internet, with its ability to connect billions of people, to enable access to unfathomable amounts of data and knowledge, is the crux to distributing and utilising these digital health solutions. According to the World Bank, one out of five people in Africa still lacks access to the internet, including over 200 million young people on the continent, while others, who are fortunate enough to be able to connect, still pay an estimated 75$ for 1GB of data. Until this fault in accessibility and affordability is solved, the nations will not see the benefits of these so-called “solutions”.
The price to bring 1.1 billion more people online? 100 billion dollars. And so as we await this incredible investment, we need to maximize the use of existing infrastructure and limited resources.
We need to act now by investing in digital health processes and approaches that work and have proven to help those who are most in need. Recognizing that digital health can fundamentally change health outcomes, current advocacy and policy recommendation must focus on enhancing research and development, innovation and collaboration across sectors.
Transform health is one of the forefront coalitions dedicated to achieving universal health coverage in the digital age by campaigning and collaborating with individuals and communities who stand to benefit the most from digital health transformation. In the ongoing 75th session of the U.N. General Assembly, the coalition, together with Devex and other partners, convened digital health experts and practitioners to discuss the future of digital health technologies and the importance of closer coordination between digital health actors. The expert meeting provided the much-needed opportunity and a call to action to reflect on current lessons, challenges, and efforts to accelerate access to care and harness the potential of data and digital health tools to advance Universal Health Coverage.
While engaging in policy dialogues and advocacy to shape the digital health process, there is the need to resource those at the forefront of implementing and using these technologies to save lives and improve health outcomes. It is crucial to invest in community health workforce capacity to use sustainable, efficient, and cost-effective digital systems and tools. Further connecting the unconnected in rural and remote areas that live out of reach of traditional cellular mobile networks will require robust dialogues and frameworks that actively involve the private sector to complement government efforts and funding.
Teamscope is one of few digital health applications empowering frontline community health workers to collect data for clinical and field research. The easy-to-use application enables frontline health workers to create their own mobile forms, visualize data, and most significantly, collect data even without internet access. Teamscope is working to address the problem of communities being left behind as a result of lack of access to the internet.
We may be far from reaching the USD100 billion investment. However, working smart, investing in proven and tested digital health applications, addressing digital inclusion for vulnerable groups, and building capacity to use technologies and collaborating across all sectors will help ensure that no one is left behind in this digital age.
Not only do digital health innovations significantly contribute to achieving universal health coverage, but could fundamentally influence the effectiveness of a nation’s response to an unexpected health crisis, such as a pandemic. When infectious diseases begin to spread within a population, their transmission is enabled by the lack of understanding of its dynamics, and consequently a slow or ineffective response. With the necessary digital infrastructure, data can be collected (also using mobile data collection apps) and shared, compiled, analysed and visualised. The faster and more widespread this process, the better a nation can distribute the necessary personal protective equipment (PPE), vital medical equipment, and greatest use of limited healthcare professionals.
We still have a lot to learn from the recent COVID-19 pandemic, which has infected 34 million people, and already claimed the lives of over a million people worldwide. At the start of this crisis, data on this elusive virus were only slowly gathered, but mobile data collection quickly helped to elucidate high-risk patients and guide further medical interventions. This data collection, however, wasn’t available everywhere. And while it seems that the rate of growth of COVID-19 cases in the african continent are slowing down, the International Rescue Committee, a global humanitarian relief body, believes that the true true scale of the pandemic may be hidden because of a lack of testing and issues with data.
This pandemic is creating a vicious cycle of insufficient infrastructure in developing nations. A lack of digital health innovations limits an effective virus response, which worsens necessary investments for sufficient infrastructure, and again, struggling with future waves of infections. This downward spiral drives a further discrepancy between developed and developing nations.
As digital health becomes more prevalent during and as predicted after the pandemic, its determinants such as communication technologies and access to equipment, broadband, and the internet should be prioritized in the various national and international stakeholder conversations and long-term investment plans.
Global discrepancies in implementing and utilising digital health interventions does not only affect the present, but can lead to exponential differences in the future. Health is a fundamental right, and achieving universal health coverage should be in the interests of everyone. If the coronavirus crisis has taught us one thing, it is that in an increasingly connected and digital world, the weakest link can have a global effect. Investments should aim to level the playing field, broadening the affordability and accessibility to the internet will enable the wide-spread use of big data, mobile data collection applications, and digital health tools to increase global health. Now, more than ever, we need to ensure no one is left behind.
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