Healthcare’s $3 trillion question: Should the likes of Google and Facebook control this data?

April 9, 2018

April 7 was World Health Day, and the occasion warrants a closer look at the way healthcare-related data is managed. The challenges are laid out in the World Health Organization’s bulletin on policy implications of big data in the health sector:

In the field of health-related big data, the public needs to be reassured that security measures are mandated and enforced. As new analytical models, data sources and stakeholders increasingly build into dynamic relationships, it may be helpful to think of health-related big data as an evolving ecosystem.

There are several challenges to the future development of this data ecosystem. Even basic health data can be misused and lead to discrimination, especially of vulnerable populations. The fair distribution of any new benefits that may arise from the collection and analysis of big data may also pose hard challenges.

The importance of healthcare cannot be overstated. Healthcare is not only tied to the most basic human needs, it also is a lucrative industry. There has been a “frenzy of healthcare-related dealmaking” recently, driven by data.

It has been noted that the healthcare industry dwarfs advertising at an estimated worth of $3 trillion, and it produces about 30% of the world’s data. If advertising plus data has been the driving force for the likes of Google and Facebook, we can start to see what the stakes of tapping into healthcare data may be.

With the use of social media data in the limelight, it’s a good time to project the kind of questions that apply there to healthcare data as well. How is data managed? Do users get to have consent over how their data is used? And do they get a cut out of the value generated by using that data?

ZDNet thought it would be interesting to address these questions to organizations involved in managing healthcare data. It turned out to be interesting indeed, starting with the fact that most of them did not address our request for comment. Some, however, did.

ZDNet talked to Raj Sharma, CEO of Health Wizz, and Evgeny Chereshnev, CEO and founder of Biolink.Tech. Health Wizz is a mobile platform for aggregating, organizing, and sharing medical records. Biolink.Tech is a multi-functional wearable that helps track, manage, and implement personal information, and it helps track accesses, permissions, finances, and health indicators.

There is a wide array of health-related data. However, the form most of us are more familiar with is the Electronic Health Record (EHR). EHRs have traditionally been a pain point for healthcare professionals and patients alike.

But why is that so—inappropriate or insufficient technology, lack of standards and data integration, or subpar processes, incentives and framework for data management and stakeholder coordination?

Sharma notes that, for professionals, the problem surfaces when trying to coordinate patient care across two health systems, while for patients the problem is different:

“Because of HIPAA regulations, and in some cases because of competitive reasons, healthcare systems are reluctant to share data with hospitals in other healthcare systems. Even if sharing of healthcare data was possible across healthcare systems, lack of interoperability among EHR systems would render the data unusable.

For patients, the issue is different. Patients are not considered to be covered entities under HIPAA, and hence, HIPAA is not applicable when it comes to patients getting a copy of their data from the EHR.”

It is already clear that, even for EHR data, which has been managed for years already and should be relatively well understood, there is an interoperability issue. Is it lack of standards that’s holding interoperability back?

There seems to be an array of standards and related bodies there—HL7, ICD9-10, HRBA, to name just a few. What part does each of those play, and is there anything missing from this picture? Health Wizz is a member of the HL7 FHIR Foundation, as well as HRBA, and Sharma had lots of insights to share:

FHIR—Fast Healthcare Interoperability Resources is a next generation standards framework created by HL7 to leverage the latest in web standards. FHIR solutions are built from a set of modular components called ‘Resources.’

Because these resources can easily be assembled into working systems that solve real world clinical and administrative problems, FHIR will go a long way to address the interoperability issues that have plagued the healthcare industry.”

Biolink.Tech, on the other hand, does not work directly with EHRs, but Chereshnev did weigh in on the topic:

“In terms of standards, it is best to ask the authors of those, because before proposing a standard, they are obligated to analyze and consider all other variants. But what is most important to understand here is that technology today is not what it used to be in terms of evolution speed. Standards used to be something untouchable, impossible to change. Thirty years ago, that was fine. Today, it’s not. All standards must be reviewed at least once per year, as there is a huge chance that some tech made those obsolete in the best case scenario, and just very harmful to people in the worst.”

Even though we’ve just scratched the surface, certain themes are beginning to emerge: Many issues in healthcare data management are not due to lack of technology, but more of a byproduct of business models and regulation. And patients are mostly out of the loop.

So, the $3 trillion question is: Is it really a good idea to let the Googles and Facebooks of the world take control of healthcare data, as they’ve done with other data?

ZDNet has the full story

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