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Tag: Health Data

Barbarians at the Gate

By ADRIAN GROPPER, MD

US healthcare is exceptional among rich economies. Exceptional in cost. Exceptional in disparities. Exceptional in the political power hospitals and other incumbents have amassed over decades of runaway healthcare exceptionalism. 

The latest front in healthcare exceptionalism is over who profits from patient records. Parallel articles in the NYTimes and THCB frame the issue as “barbarians at the gate” when the real issue is an obsolete health IT infrastructure and how ill-suited it is for the coming age of BigData and machine learning. Just check out the breathless announcement of “frictionless exchange” by Microsoft, AWS, Google, IBM, Salesforce and Oracle. Facebook already offers frictionless exchange. Frictionless exchange has come to mean that one data broker, like Facebook, adds value by aggregating personal data from many sources and then uses machine learning to find a customer, like Cambridge Analytica, that will use the predictive model to manipulate your behavior. How will the six data brokers in the announcement be different from Facebook?

The NYTimes article and the THCB post imply that we will know the barbarians when we see them and then rush to talk about the solutions. Aside from calls for new laws in Washington (weaken behavioral health privacy protections, preempt state privacy laws, reduce surprise medical bills, allow a national patient ID, treat data brokers as HIPAA covered entities, and maybe more) our leaders have to work with regulations (OCR, information blocking, etc…), standards (FHIR, OAuth, UMA), and best practices (Argonaut, SMART, CARIN Alliance, Patient Privacy Rights, etc…). I’m not going to discuss new laws in this post and will focus on practices under existing law.

Patient-directed access to health data is the future. This was made clear at the recent ONC Interoperability Forum as opened by Don Rucker and closed with a panel about the future. CARIN Alliance and Patient Privacy Rights are working to define patient-directed access in what might or might not be different ways. CARIN and PPR have no obvious differences when it comes to the data models and semantics associated with a patient-directed interface (API). PPR appreciates HL7 and CARIN efforts on the data models and semantics for both clinics and payers.

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Patient Controlled Health Data: Balancing Regulated Protections with Patient Autonomy

By KENNETH D. MANDL, MD, MPH, DAN GOTTLIEB, MPA, and JOSHUA MANDEL, MD

This piece is part of the series “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” which explores whether it’s possible to advance interoperability while maintaining privacy. Check out other pieces in the series here.

A patient can, under the Health Insurance Portability and Accountability Act (HIPAA), request a copy of her medical records in a “form and format” of her choice “if it is readily producible.” However, patient advocates have long complained about a process which is onerous, inefficient, at times expensive, and almost always on paper. The patient-driven healthcare movement advocates for turnkey electronic provisioning of medical record data to improve care and accelerate cures.

There is recent progress. The 21st Century Cures Act requires that certified health information technology provide access to all data elements of a patient’s record, via published digital connection points, known as application programming interfaces (APIs), that enable healthcare information “to be accessed, exchanged, and used without special effort.”  The Office of the National Coordinator of Health Information Technology (ONC) has proposed a rule that will facilitate a standard way for any patient to connect an app of her choice to her provider’s electronic health record (EHR).  With these easily added or deleted (“substitutable”) apps, she should be able to obtain a copy of her data, share it with health care providers and apps that help her make decisions and navigate her care journeys, or contribute data to research. Because the rule mandates the ”SMART on FHIR” API (an open standard for launching apps now part of the Fast Healthcare Interoperability Resources ANSI Standard), these apps will run anywhere in the health system.

Apple recently advanced an apps-based information economy, by connecting its native “Health app” via SMART on FHIR, to hundreds of health systems, so patients can download copies of their data to their iPhones. The impending rule will no doubt spark the development of a substantial number of additional apps.

Policymakers are grappling with concerns that data crossing the API and leaving a HIPAA covered entity are no longer governed by HIPAA. Instead, consumer apps and the data therein fall under oversight of the Federal Trade Commission (FTC). When a patient obtains her data via an app, she will likely have agreed to the terms and the privacy policy for that app, or at least clicked through an agreement no matter how lengthy or opaque the language.  For commercial apps in particular, these are often poorly protective. As with consumer behavior in the non-healthcare apps and services marketplace, we expect that many patients will broadly share their data with apps, unwittingly giving up control over the uses of those data by third parties.

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Health in 2 Point 00 Episode 92, Takeover Edition | Louise Schaper, HIC 2019 Australia

Today on Health in 2 Point 00, we have another takeover edition! On Episode 92, Jess talks to Louise Schaper, CEO of the Health Informatics Society of Australia (HISA) at HIC 2019. Louise’s key takeaway from the conference is that health tech in Australia is focused on humanity and improving outcomes for all people. Jess also asks Louise about the Australian Digital Health Agency’s MyHealthRecord, an online summary of individuals’ health information. It’s got a great participation rate with 90% of Australians opted in, but it’s not being utilized as much as it could be. Finally, Louise debunks some of the chatter around HealthEngine’s data scandal in which they were caught sharing health data with law firms. The thing is, the press has sold it as if they have full access to your medical data and has sold that, but that’s not the case.

Health Data Outside HIPAA: The Wild West of Unprotected Personal Data

Deven McGraw
Vince Kuraitis

By VINCE KURAITIS and DEVEN McGRAW

This post is part of the series “The Health Data Goldilocks Dilemma: Privacy? Sharing? Both?”

“…the average patient will, in his or her lifetime, generate about 2,750 times more data related to social and environmental influences than to clinical factors”

McKinsey analysis

The McKinsey “2,750 times” statistic is a pretty good proxy for the amount of your personal health data that is NOT protected by HIPAA and currently is broadly unprotected from sharing and use by third parties.

However, there is bipartisan legislation in front of Congress that offers expanded privacy protection for your personal health data. Senators Klobuchar & Murkowski have introduced the “Protecting Personal Health Data Act” (S.1842). The Act would extend protection to much personal health data that is currently not already protected by HIPAA (the Health Insurance Portability and Accountability Act of 1996). 

In this essay, we will look in the rear-view mirror to see how HIPAA has provided substantial protections for personal clinical data — but with boundaries. We’ll also take a look out the windshield — the Wild West of unprotected health data.

Then in a separate post, we’ll describe and comment on the pending “Protect Personal Health Data Act”.

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Health in 2 Point 00, Episode 90 | One year older…

Today on Health in 2 Point 00, we’re wishing Matthew a happy birthday!

On Episode 90, Jess and I talk about the drama around Amazon PillPack and Surescripts, HelloHeart’s $12 million raise, and Cerner selling its health data. In the end, the data is going to have to flow after this battle between Surescripts and PillPack. For HelloHeart’s blood pressure and cardiovascular health management platform, have they found their niche or is it too little too late with others like Livongo, Omada and Vivify in the space already? Finally, Cerner has put in their earnings call that they’re going to develop a business model around selling their data, sending ePatient Dave on a Tweet storm, but how big of a deal is this really? —Matthew Holt

Announcing a New Series: “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?

By ZOYA KHAN

I would like to introduce you to a new ongoing series that THCB will be featuring called “The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?”. It is about time we started talking about health data privacy and policy, and we have just the experts on hand to do so: Vince Kuraitis and Deven McGraw.

The Health Data Goldilocks Dilemma: Sharing? Privacy? Both?” series will cover a whole host of topics that discuss, clarify, and challenge the notion of sharing data and if it should be kept private or made public. On the one hand, sharing health information is essential for clinical care, powering medical discovery, and enabling health system transformation. On the other hand, the public is expressing greater concerns over the privacy of personal health data. This ‘Goldilocks Dilemma’ has pushed US policymakers towards two seemingly conflicting goals: 1) broader data interoperability and data sharing, and 2) enhanced data privacy and data protection.

But this issue is even more nuanced and is influenced by many moving parts including: Federal & State privacy legislation, health technology legislation, policy & interoperability rules, data usage from AI & machine learning tools, data from clinical research, ethical concerns, compensating individuals for their data, health data business models, & many more. 

Fear not, Deven & Vince are here to walk readers through this dilemma and will be providing pieces to help explain what is going on. Most of their discussion & pieces will cover 2 specific affected areas: 1) How are policymakers addressing health data privacy risks, and 2) The impact on business models within the Health Data Goldilocks Dilemma.

We hope you enjoy the series and if you have any pieces to add to it, please email me zoya@thehealthcareblog.com

Zoya Khan is the Editor-in-Chief of THCB & an Associate at SMACK.health

Is Good, Human-Centered Design in Healthcare Possible? | frog Healthcare Lead Stefania Marcoli

By JESSICA DAMASSA, WTF HEALTH

Frog, the renowned design and strategy firm, has been involved in healthcare for a long time. So, how are they infusing human centered design into the healthcare process? What is frog’s perspective on how healthcare companies can integrate design thinking into their solutions? And most importantly, what does good design in healthcare look like?

Filmed at the Frontiers Health Conference in Berlin, Germany, November 2018.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew HoltGet a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health.

This Startup is Making Clinical Trials Easier to Run | Cyntegrity Co-Founder Artem Andrianov

By JESSICA DAMASSA, WTF HEALTH

Clinical trials are arduous and expensive, especially in this new regulatory climate. Cyntegrity, a new software tool has the potential to change the cost curve, by offering a dynamic, risk-based ecosystem for pharma, biotech, or medtech companies. Not only does Cyntegrity help these companies navigate protocol and regulation compliance, but they provide patient safety by identifying misconduct or fraud, and project management hazards. Best part? All mistakes are analyzed in real time. The alternative is somebody looking at a spreadsheet…terrifying!

Filmed at the Frontiers Health Conference in Berlin, Germany, November 2018.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew HoltGet a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health.

Better than Blue Zones? The Pioppi Protocol | Pioppi Protocol Filmmaker Donal O’Neill

By JESSICA DAMASSA, WTF HEALTH

You’ve probably heard of Blue Zones…but have you heard for the Pioppi Protocol? The southern Italian secret to longevity, healthy aging, and peace of mind has been the subject of a hit movie, with books in seven different languages. Now, the Pioppi Protocol is going digital with a new mobile app thanks to Cardiologist Dr Aseem Malhotra and filmmaker Donal O’Neill. Find out all about the yet-to-be-released app, and the gorgeous fishing village in Pioppi, Italy that inspired the entire movement.

Filmed at the Frontiers Health Conference in Berlin, Germany, November 2018.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew HoltGet a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health.

Health Startup Trends: US vs. Europe | Startup Health Academy Director Polina Hanin

By JESSICA DAMASSA, WTF HEALTH

Since 2012, Startup Health has been building a “global army of health transformers” within its accelerator program. Now, with 20% of their startups located outside of the US, they have a unique perspective on the trends shaping health startups and investment in the US vs. Europe, or other markets. Academy Director Polina Hanin works closely with the startups and gets a chance to see what technology, policies, and models are truly universal, and what needs a local context. Find out what some of the implications of universal healthcare are for startups. And, what advice she has for startups trying to break into the US market. What’s the one critical thing they often forget?

Filmed at the Frontiers Health Conference in Berlin, Germany, November 2018.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew HoltGet a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health.

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