How to make data ownership a reality in individual healthcare

Noosheen Hashemi is founder and CEO of January AI.

The health technology sector is expanding rapidly after receiving a capital injection at the start of the pandemic that new status quo† The outlook is promising for what further digitization and technological innovation can bring when it comes to healthcare.

And one of the most exciting things happening in health technology doesn’t require designing new technologies or developing new therapies; rather, it’s a smarter and more efficient way to use what we already have: healthcare data.

I’ve argued in the past about the benefits of individuals owning their own health data, and the benefits are clear, from more privacy to more consumer choice. The bigger question then is how to implement such a paradigm.

How is health data protected?

The Interoperability and patient access Last line which came into effect in the summer of 2020 is a mandate, and the opportunity it presents is, in my opinion, a gift. Instructing CMS-regulated insurers to make patient data accessible lays the foundation for consumer data ownership, with built-in privacy and security safeguards such as API guidelines and best practices† These include the importance of following both CMS and FTC regulations around building apps, which require collaboration between older healthcare, newer health technology, and other technical stakeholders.

The way healthcare data sharing stands now, it’s easy not up to the challenge (registration required)† Many health apps and EHRs are currently vulnerable to hacking. In addition, not all of them are transparent about how consumer data is collected and used. A lack of broad data security has also led to serious problems in many sectors, leading governments to: confirm his goal to tackle cybercrime.

Data tools that are mobile-friendly and compatible with accessibility tools will be critical. While the purpose-built APIs introduced by some companies in response to the Final Rule are essential, a data democracy will go further by ensuring that everyone can access their data and do what they want with it.

What are experts saying now?

Other crucial considerations, such as those suggested by co-founder of health technology Murali Kashaboina, include entering into individual business partner agreements with each supplier that provides technical services as part of the healthcare industry, with enhanced liability and indemnity, and the use of biometric multi-factor authentication. Sensitive information must be securely encrypted at the data and transport layers, and there must be automatic encryption of all data stored on a device at the consumer or carrier level.

Health technology companies looking to capitalize on the open healthcare data paradigm would do well to not only meet but exceed requirements. This means people get the streamlined experience and freedom of choice they have come to expect from other consumer technology sectors. Plus, it means giving them the option to not only own their data, but also sell it back to the companies that are currently getting it for free.

Keeping healthcare data safe is vital while enabling the sharing necessary to improve quality of care and patient choice. Lawmakers and tech and health professionals will have to work as a united front to ensure that both the laws and the tech are safe. The US currently has no overarching data protection structure, and updated and comprehensive legislation, similar to the UK Data Protection Act of 2018, would be helpful. The main difference is that instead of consumers paying a fee to request their information, companies should be the ones paying for access.

As a Cambridge Analytica whistleblower and co-founder of the Own Your Data Foundation Brittany Kaiser claims, nothing should be standard – everything should be opt-in. This means companies must provide compelling and clear reasons why someone should allow them to collect their data, and people must still have ultimate ownership of the information.

How would this health data sharing utopia work?

If everyone from big tech to employers and health insurance companies can collect and benefit from people’s data, they should be able to do the same. Organizations like Get My Health Data are working to help consumers understand and enforce their data ownership rights, but we can go further.

To make data truly available, it is essential that all people have the same access. Organizations such as the Own Your Data Foundation are pushing for raising awareness of the possibility of data ownership and lobbying for legislation that can make it possible.

As 23andMe CEO Anne Wojcicki points out, the idea that consumers should not have the right to say how their information should be stored and shared is offensive. Instead, I argue that consumers should be given the education and resources to make informed decisions about this.

Tech CEO and Member of the Board of Directors of the World Economic Forum Murat Sönmez suggests commercial apps that want to use the data can be certified by a third party; users can then sign up for the terms of each individual app and receive compensation. Not only would this create a fairer health data dynamic, but it would also give consumers an income boost.

If someone wants to make their data available for use by those big companies that are currently taking advantage of it for free, they should be able to sell it to them. It should be stored somewhere neutral and owned by the consumer and should be distributed according to the choice of the consumer. If someone wants to donate their data for research, they should be able to. And if they want to fund charities they care about selling their data—rather than watching it end up in a company’s ad-buy coffers—that’s their prerogative.

Ownership of health data is health equity.

By putting people in control of the delivery of their health data, they can take a more active role in ensuring their health care is tailored to their needs – and individualized health care is equitable health care. All data of a consumer must always be accessible to them.


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