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Tag: Medical Records

Patient Controlled Health Data: Balancing Regulated Protections with Patient Autonomy

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

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 66 | Ciitizen, Limelight Health, The Pill Club, and ADURO

On Episode 66 of Health in 2 Point 00, Jess and I talk about money, money and more money. For one, Ciitizen, a health records company focusing on cancer patients, just closed a $17 million round. Limelight Health, which helps employers put together quotes for employee benefits, raised $33.5 million, and The Pill Club, an online birth control prescription and delivery service, raised $51 million. Jess also asks me about ADURO’s $22 million raise and why the employee wellness space is continuing to get so much funding. And again, be sure to find us at our booth at HIMSS! —Matthew Holt

Medicare Holds Out Promise of Health Record Access Revolution

By MICHAEL MILLENSON

This is the second of two posts from the Society of Participatory Medicine about the important policy issue regarding portability of our medical records. The first provided background, with link to a PDF of the comments SPM submitted, largely authored by Michael Millenson, who provides this essay for context.

The Trump administration is proposing to use a powerful financial lever to push hospitals into making the patient’s electronic medical record interoperable – that is, readable by other care providers – and easily available to patients to download and organize via an app.

The possible new mandates, buried in a 479-page Federal Register “Notice of Proposed Rule Making” from the Centers for Medicare & Medicaid Services (CMS), could become part of hospital “conditions of participation” in Medicare. That means if you don’t do it, Medicare, which accounts for about a third of an average hospital’s revenues, can drop you from the program.

In a comment period that closed June 25, we at the Society for Participatory Medicine registered our strong support for taking the administration rhetoric heard earlier this year, when White House senior advisor Jared Kushner promised a “technological health care revolution centered on patients,” and putting it into practice. The American Hospital Association (AHA), on the other hand, while professing its support for the ultimate goals of interoperability and patient electronic access, was equally strong in telling CMS it was going too far, too fast and with too punitive an approach.

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SPM’s comments on important proposed CMS interoperability rules

By E-PATIENT DAVE DEBRONKART

This is the first of two posts from the Society of Participatory Medicine about an important policy issue regarding portability of our medical records. The second part will be published tomorrow and is written by Michael Millenson, who did the lion’s share of this work, as noted below.

Our Society’s Advocacy and Policy chair Vera Rulon @VRulon has submitted our comments on the proposed rules that have been discussed at great length on social media.

These regulations are a big deal for participatory medicine – they’re the successor to the Meaningful Use rules that have governed patient access to their chart, among other things. The regulations do this by altering how a hospital gets paid based on how well their data moves out of their computers. We want this; we believe it is essential in enabling patients and families to achieve the best possible care. (More on this in Millenson’s companion post.)

Not surprisingly, some hospitals don’t like new rules that affect how they get paid, and have lobbied heavily to NOT be required to give us our data. Some observers say there are ulterior motives – for instance see these 30 seconds of Yale cardiologist Harlan Krumholz at Connected Health 2016, on how a health system CEO told him flat out:

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Can Facebook Save Us?


At some point, this gets to be ridiculous. Online, I can buy any item from anywhere at any price, pay any bill, watch any movie, listen to any song, order dinner, schedule car repair or read about any subject on Wikipedia.  I can determine the weather in Rio, sport scores of Barcelona, Parisian traffic or by GPS the location of my kids, just down the block.  However, I absolutely cannot learn anything at all of the health history of the flesh and blood cancer patient sitting right in front of me.

Today, I am seeing long-term patient, Thomas R.  Father of three and a really nice guy, Tom is a medical challenge.

He is immunocompromised and status post 20 years of complex chemotherapy, radiotherapy, a bone marrow transplant and several bizarre complications, we barely understand.  In the last two months, since his last visit with me, he has seen an internist, a dermatologist, a podiatrist, a neurologist, a dentist and an infectious disease specialist.  These doctors ordered X-rays, lab tests, blood cultures, an EMG, a skin biopsy and several new medicines.

These are confusing tests resulting in confusing diagnoses with confusing therapy in a confusing patient.

What records do I have of all this new complexity? Nada. None.  Moreover, based on our files, all these other physicians have none of ours.

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