I am a digital health activist. In my work, I see evidence of how health technologies violate people's right to privacy. Minority groups and those with sensitive health conditions are most at risk. Their fears and concerns about data privacy are real.
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
Digital technology for health care exists to make our lives simpler and convenient. In this regard, health technologies have increased health access for individuals and communities.
But people worry about where digital health technologies can go wrong. The misuse of data is increasing. We see communities left behind in the ‘digital divide. In some jurisdictions, policies do not exist to protect the human right to privacy.
Mboma is a young person living with HIV/AIDS in a West African Country. She visits her local health center and has to provide her personal data to the online database. The procedure worries her. She does not want to provide sensitive data about her HIV/AIDS status.
She is not sure if the data will remain only with the health center or others may access it. She feels limited. But she needs to provide her personal data to access the service she needs that day.
There are many like Mboma from around the world, especially in developing countries. They feel their right to privacy is at risk in this digital age. The basic laws to protect their personal health data do not exist or are not enforced.
Protecting people’s rights to privacy in a digital age should not be another political talk. Minority groups, including those belonging to particular sexual orientations, are at risk. They leave in constant fear of discrimination and abuse should their data get to the wrong hands.
I hold a master's degree in digital communications. I work in the field of digital health and I consider myself digital literate. But like many people, I cannot always understand the hundreds of online content I consent to. For each click online or personal health information I submit, I am unsure where my data ends. I ask myself, to what extent is my right to privacy violated when I use digital health applications.
The digital transformation comes with a drive for big data.
The rush for data puts a strain on our right to privacy.
We see both government and digital innovators racing for data control. If there are no limits or checks on collecting and using data, we create more harm than good.
In the health sector, data is driving more innovative digital health solutions. But behind these innovations are mechanisms and third parties monetizing health data. Data from sports, menstrual and mental health applications become commercial value. Our activities on these applications become valuable for developers. Our health data is either shared or sold to an advertising company.
The problem here is the commercialization of data and data getting into the wrong hands. The fact that this goes on behind the user and without their consent is wrong.
Human rights experts continue to raise concerns about health technologies. They worry about their impact on our rights to privacy, equity, and autonomy. So far three main challenges have come up. The first is the laws that protect our rights. The second is the design process of digital health applications. And the third is the extent to which users have the awareness and agency to demand their data protection.
I have seen firsthand how paper health records can frustrate health workers. Manual search for medical records takes time. Paper-based health records can easily go missing. That is why many have advocated for electronic health records. Dr. Assan from Ghana tells the story better with his recent humans of digital health story. As a physician, he tells how electronic health records can be life-saving. His story gives examples of how health workers make time-sensitive decisions with data.
The move from paper to electronic health records is the future of health data collection. But we need to safeguard health data in an online space.
This calls for the protection of health data by law. Legislation must define the legal process of health data collection, storage, and use. Institutions and agencies that are not mandated to access health data must not do so. Governments must empower citizens by providing access to justice when privacy violations happen.
I worked with young people who use health applications for reproductive health information. Often, they cannot choose a mobile setting that protects their data when using the apps. Even digital literate find it difficult to choose better privacy options online. That is why we need to make privacy a default. People should choose to opt-in and not out, that is privacy by design.
The concept of privacy by design is not new. But we know that app developers care less about our privacy since they make money off our data. Once you sign onto a health app, you’re often giving everything away. Your name, address, the food you eat, when you sleep, and other forms of personal data. But can we expect much when we use them for free? Yes, we can and must. It is our right.
That is why we need to examine the design and development of digital health technologies. There must be ethical and human rights standards for digital health design process. We need to define procedures and standards at the national and international level. Teamscope is a data collection application for medical data with ethical standards. The application is compliant with Good Clinical Practice (GCP). The data collection tool protects data subjects' rights, integrity, and confidentiality.
In the European Union, legislation protects citizens' data rights. The E.U GDPR empowers groups and individuals to take ownership of their data.
Legislation and means of enforcement give people the capacity and agency to act. Citizens become motivated to take action and make choices on their personal data. That is what we need to see everyone do. To take action.
I live within the European Union and recently filed a subject access request. I was curious to know what data Facebook and Twitter have about me. I also wanted to understand how they use this data. I requested these two institutions to give me access to any personal information they hold on me. It took some days to get my data.
I viewed the data behind my online profile for the first time. To my surprise, they gave me over 10 years of personal data. I gained insight into my online profile and which advertising companies use my data.
The bottom line is that I did this because I am empowered to do so by law.
That is not the same for everyone. Many people do not even know they have data privacy rights. People are not empowered to take action for their data safety. Addressing privacy rights violations is a collective responsibility. That is why people must be aware of privacy violations and be ready to act to safeguard their personal data.
Globally there are concerns about data privacy rights violations. In countries where there is no legislation, there are real impacts on people's lives.
Moving forward, we need concrete actions and measures at the country level. Designers of health technologies must identify the risks of discrimination in their apps. All design processes must involve communities from diverse racial, gender, and socioeconomic backgrounds.
The use of health technologies calls for a drastic change in data protection. We must safeguard our online and offline health data. That is the only way to realize people's right to privacy.
The digital health transition beholds governments to enact laws that protect privacy rights.
We need health tools that protect human rights, empower individuals, and do no harm. It goes without saying that digital health technologies can only be as good as we humans enable them to be. For digital health to become the future norm, we must first protect human rights at all costs.
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
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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