“YOUR DATA – YOUR RIGHT”

The digital disruption in the healthcare industry is turning heads. The value of medical health data is on the rise, evidenced by the increasing threat of medical data theft worldwide. In fact, these days, it’s been said to be even more valuable than that of personal banking data. It came therefore as no surprise when the European Union announced its new regulation on data protection and included the protection of personal health data as part of its coverage. From May 2018, the European Union aims to increase the protection of personal health data by requiring patients to give explicit and unambiguous consent to the processing of their personal data. Patients also have the right to access their own personal data, the right to transferring their data to another entity or person, and the right to object the processing of their data.

This process is a timely development. It means patient empowerment. It returns the ownership of personal health data to the control of the individual and effectively unlocks the monopolizing control of the companies/institutions that collected that data in the first place. But what does this decentralization of data really mean and how will this revolutionize research and development in the healthcare industry?

Driving population health through meaningful health data exchange

The robust exchange of medical health data as well as ease of access are crucial in advancing research and development in the healthcare industry. The decentralization of personal health data brings us one step closer to such an eco-system, but not quite. This is because individuals generally prefer to remain anonymous when it comes to matters of health and are less likely to participate in the exchange of medical health data especially if they have concerns about data security.

According to the founders of the HIT Foundation, this is where their platform comes in. HIT (Health Information Traceability) Foundation is an organization that aims to be the leader in blockchain technology for the healthcare market by empowering patients with their medical health data ownership.

We recently met the foundation’s co-founders, Dr. Quy Vo-Reinhard and Ms. Elizabeth Chee at our last Women in Digital Health event, where they shared about the foundation’s blockchain-based online marketplace for personal health data and explained how this platform will inevitably enable collaboration to take place between companies/institutions in the healthcare industry – through the meaningful exchange of health data between stakeholders in a secure environment, and with the consent of the individual data owners.

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Image 1: Dr. Quy Vo-Reinhard, Chief Data Officer & Co-Founder, with the HIT Foundation team and advisory board on the slide behind her.

“I believe blockchain is the technology of the future. It ensures that collaborations can happen in an open and secure manner. Our platform allows entities that store the medical data (e.g. hospitals, pharmaceutical companies) to connect with those who need access to it (e.g. policymakers, research and development divisions), with the individual data owner facilitating this exchange through his/her consent,” explained Dr. Quy Vo-Reinhard.

By using blockchain technology, HIT’s online marketplace secures individual data owners’ anonymity – making it more attractive for people to participate. Through the platform data seekers can incentivize individual data owners with tokens that can be earned when participating in a data exchange.

Integrity of data is of upmost priority

To ensure the integrity of the health data exchanged on their platform, current stakeholders who store the data (e.g. hospitals, pharmaceutical companies) are very much part of the eco-system. Their participation in the eco-system ensures that the medical health data of the individual that is exchanged has been officially verified and maintains its integrity. The foundation’s platform also makes it easy for current stakeholders to participate in the market without needing to completely build a new system; just plug and play. “You, the individual, are the person who can connect the dots and facilitate a meaningful exchange. We want the critical intermediaries to be a part of the system, but it has to serve a social purpose. Your data could be used to facilitate quality of care, prevention, and drive population health,” shared Elizabeth Chee.

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Figure 1: Token Economy in three phases

The next steps

Blockchain technology’s increasing application in the healthcare industry is set to benefit many stakeholders. It will first and foremost benefit the individual by securely unifying his/her medical health data and provide a comprehensive medical history that can be easily shared by the individual to medical institutions regardless of where the data resides in the first place. It will secondly benefit medical institutions and companies who are sitting on valuable medical health data but have had no options to exchange this knowledge, because of a lack of secure data transfer options and a lack of systems in place to easily engage and facilitate consent from individual data owners. The potential of blockchain technology’s application in the healthcare industry is tremendous and will most definitely play a defining role in revolutionizing its future.

The HIT Foundation’s blockchain-based marketplace for personal health data will be launched in summer 2018. They were recently recognized as one of the” Blockchain for social good ” projects at the World Economic Forum 2018 and was invited to participate in the panel discussing “Blockchain for Humanity”.

About the author

Aisha Schnellmann is a Singaporean sociologist by training, interested in healthcare, education, and sustainability issues. She is passionate about producing content that promotes meaningful dialogue, focusing on print and digital content that resonates with a strong call-to-action. Based in Zurich, her interest in digital healthcare grew from the conversations she had with committed medical staff in rural hospitals in Asia, who remain hard-pressed with the technology available to them.

On September 9th 2014, Apple CEO Tim Cook detailed the company’s latest breakthrough product, “Apple Health”. It was proudly paraded promising the most comprehensive digital tracking of an individual’s health and wellbeing. From monitoring sodium intake to recording sleep cycles, it was tipped as a world’s first in its absolute breadth of tracked health data metrics. A game-changer in personalised healthcare, it aimed to empower users with vital information that informed better decision-making in lifestyle choices. Glaringly, Apple chose not include the tracking of menstruation in its comprehensive metrics; an exclusion that was pounced on by critics worldwide as a neglect of women’s healthcare. It has since rectified this oversight, and included fertility forecast and menstruation in its list but it still begs the question: how did a global tech company build a product, and forget about the needs of half of the world’s population?

Create what you need

The list of top health concerns that women have versus men reads very differently. Women are concerned about health issues such as breast and cervical cancer, maternal and reproductive health, depression, and violence against them (especially physical and sexual violence). Men on the other hand, are concerned about heart attacks, cancer, weight gain, and strokes. This difference in perspectives carries over into the discussions held by tech talent within the digital healthcare space, and ultimately determines which product gets made first (or at all).

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With the tech industry disproportionately male-dominated, women usually form the minority at these discussions. At Google, only 17 percent of its tech talent are female. At Facebook, it is 15 percent. As a result, there continues to be a lack of focus on addressing women’s needs in digital healthcare. With women not part of the conversation during the development process, it is then unsurprising that there are limited apps built focused on women’s healthcare.

Building digital products for women

In fact, an audit of women healthcare apps available found that 80 percent of these apps tracked fertility and menstruation cycles. This greatly overlooks the breadth of women healthcare needs that can potentially be addressed digitally. With more women and girls encouraged to enter the tech industry (and nurtured to pick up coding), this potential can finally be unlocked.

The Clue app for example, was created by co-founder Ida Tin and provides a more nuanced approach at tracking fertility and menstruation cycles for women. Its expanded feature set includes tracking PMT-related (pre-menstruation) symptoms like low energy level and moods – symptoms that continue to baffle the majority of men worldwide.

In Mumbai, a group of girls aged between eight and sixteen years old picked up coding through an innovation slum project, and created mobile apps that addressed women safety, access to water and education – issues that affect women more than men. In particular, the app “Women Fight Back” tackles women’s health concern of violence against them through features such as distress alarms, location mapping and emergency contacts.

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The future of digital healthcare

The gender gap within the tech workforce is decreasing, with more girls and women formally or informally getting trained in tech. The progress however continues to be slow, so it remains to be seen to what extent women’s healthcare will be represented within digital tech. Ultimately, to create the best healthcare products, digital or not, it is important that the perspectives of men and women (and to expand it further, those within the LGBT communities) are equally included in the conversation and heard. With more women in technology, there is an opportunity that instead of being confined to the role of “consumer” and “user”, women will ultimately be able to create digital healthcare products personalised to their needs.

Do you wanna know how women can rock tech, discuss about it and get to know the code girls? Save your ticket for our next event in Zurich at the Impact Hub: http://healthinar-codegirls.eventbrite.de


About the Author

Aisha Schnellmann is a Singaporean sociologist by training, interested in healthcare, education, and sustainability issues. She is passionate about producing content that promotes meaningful dialogue, focusing on print and digital content that resonates with a strong call-to-action. Based in Zurich, her interest in digital healthcare grew from the conversations she had with committed medical staff in rural hospitals in Asia, who remain hard-pressed with the technology available to them.

Fotos sources
http://inform.tmforum.org/tag/women-of-the-digital-world/
http://www.stockunlimited.com
http://wallpaperswa.com/Art_Design/Digital_Art/women_digital_art_antenna_television_wires_cloths_show_1500x1077_wallpaper_73816