How to take control of your personal health data

Petaling Jaya MP Maria Chin Abdullah (fourth right), flanked by NEM Foundation head of Southeast Asia Stephen Chia and NEM Foundation director of investment and special projects Jasmine Ng, Chee (second right) and other speakers at the event. ― Picture courtesy of NEM Malaysia
Petaling Jaya MP Maria Chin Abdullah (fourth right), flanked by NEM Foundation head of Southeast Asia Stephen Chia and NEM Foundation director of investment and special projects Jasmine Ng, Chee (second right) and other speakers at the event. ― Picture courtesy of NEM Malaysia

KUALA LUMPUR, Oct 6 ― Patients at hospitals and clinics give out a fair amount of health data with each visit.

It is the same for medical and life insurance buyers as they have to fill out forms on the state of their health.

While those organisations are bound by the Personal Data Protection Act when it comes to storing and commercialising that data, the patient or insurance buyer does not benefit from the disclosure at all.

In fact, those organisations stand to enrich their database that will give them a competitive edge.

These are the two issues that Zurich-based non-profit HIT (Health Information Traceability) Foundation hopes to address, particularly in Asia.

Malay Mail recently met with its chief operating officer and co-founder Elizabeth Chee on the sidelines of the Women in Blockchain Asia event at the NEM Blockchain Centre in Kuala Lumpur.

The foundation, she said, wants to offer a marketplace that allows individuals to digitise and monetise their health data and trace its usage without compromising personal data protection laws.

“Data is the currency of the future. But currently, there is a monopolisation of data in the healthcare system and lack of incentives for patients and individuals to request or record, digitise, and maintain their health data.

“We want individuals to take part in the monetisation of their own data and with the use of tokenisation and blockchain, the foundation facilitates a meaningful exchange of data in a fair, secure and transparent manner.”

Those who are interested in earning tokens have to be willing to digitise their health-related data and make them shareable.

While those wanting that information must acquire tokens in order to compensate individuals for giving access to their data.

Individuals can then use token to redeem services or loyalty programmes from those who are on the foundation’s digital marketplace.

She added that the foundation does not store the health data. Their platform facilitates a direct peer-to-peer transfer between the data seeker and data creator.

“The individual is the one granting access to his or her data in exchange for tokens. It lets individuals have a say on how their data is being used.”

Citing an example of American genomics company 23andMe, Chee said users pay US$99 (RM410) for a kit to get their genetics tested.

Long after the users receive the reports, the company monetises that data over and over again without sharing the financial benefits.

In July, British pharma giant GlaxoSmithKline announced it was investing US$300 million (RM1.24 billion) in 23andMe, leveraging on genetics data to develop new medicines and potential cures.

“It would have been fair if 23andMe users were given the kits for free as an exchange for their data, or offer a way for the users to offset their healthcare costs.”

While 23andMe users gave consent for their data to be used, but Chee said many are not aware of how it would be further monetised.

On how beneficial blockchain is to the tokenisation of health data, she said the actual seeker request, user consent and token rewards are recorded and with the technology, any exchange is immutable.

“The ‘address’ is a very long string of alphabets and numbers and doesn’t tell who the person is. The only thing recorded is ‘address A’ transferred 100 tokens to ‘address B’ at this time and date, for example. There is no personally identifiable information on record.”

The foundation will be using the NEM Blockchain for this project.

The NEM blockchain is already being adopted in industries and services in, including Philippines rewards and loyalty programme Appsolutely Inc, point-of-sale terminal for cryptocurrency for retail in Indonesia called Pundi X, and backend payment and mobile settlement solutions by Singapore’s Dragonfly Fintech Pte Ltd.

Eye on Asia

While the unbanked (those who do not have a bank account) in Asia is significant, Chee said most Asians have mobile phones.

Asia has 51 per cent of the world population and sadly, many of the infectious diseases as well as people that lack basic healthcare and living in poverty.

She also said the idea aims to encourage financial inclusion and economic empowerment among the people in developing countries.

For now, the foundation’s mobile app is still in development.

With partners at the grassroots level to run outreach programmes, Chee is confident encourage more people to view this project as a means to boost their basic income.

“Our vision is to support a more sustainable and equitable healthcare that are enabled by shareable data and centred by individuals.

“On the other side of the equation, we hope to help our partners to drive more transformative medical breakthroughs.”

* A previous version of this story contained errors which have since been corrected. 

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