Promises, Predictions, and Pitfalls

A long-awaited date in healthcare data exchange has arrived: the ONC’s new information blocking guidelines went into effect today, October 6. Chilmark Analyst Fatma Niang wrote a domain monitor on this subject (available to subscribers of the Chilmark Advisory Service), but in brief, most healthcare entities will now be required to provide various patient data when requested.

There are notable exceptions to this, as outlined by the ONC itself, but there is little doubt that this rule will cause some turmoil in the industry. How will patients, providers, and healthcare itself be affected? There’s a wide range of predictions amidst every emotion from panic to elation. What will truly emerge when the smoke (and inevitable litigation) clears? The Chilmark team investigates…and wildly speculates.

Fatma Niang: There is both potential benefit and risk for patients. A coalition of covered entities has coalesced and is pushing back against the deadline. It is unclear how ONC/HHS/OIG will handle post-deadline enforcement in the absence of addressing numerous ambiguities.

Jody Ranck: This could have unintended consequences with academic medical center collaborations and dueling IRBs have different perspectives on whether they should share info for research purposes.

De-identified data are not covered by IB rule, so some have said that it could change dynamics with use of de-identified data. They fear this could lead to use of identifiable electronic health info (EHI) and inadvertently impact privacy and security in some cases.

John Moore: While October 6th should be a day of celebration as patients now have full access to all of their EHI, it is unlikely to be the celebration we hoped for. Resistance to change is rampant among provider orgs, consumer health literacy remains extremely low — EHI without context is worthless if not downright dangerous. Lastly, will patients know how to secure their EHI, especially if it is in the hands of a healthcare app with lax data security and privacy standards? The answer is no. Caveat Emptor.

Elena Iakovleva: Info blocking rule will be a hard blow for providers across all the specialties. While all the docs will have to adjust their documentation habits to fit new transparency requirements, I am eager to see how ethics will evolve in response to higher EHI access. In the past, we observed multiple lawsuits against providers who released history & physical examination (H&P) files with obesity (especially morbid) diagnoses, claiming a direct harm to the diagnosed patient’s mental health. Should we all become less sensitive to our medical data and use it wisely?

My biggest concern lies in mental and behavioral health data — how do we sustainably regulate data access for those patients/caregivers/family? Despite the obvious benefits of data transparency, I am positive we will be facing multiple, ethical challenges down the road.

Lyz Kneeland: The earth shall crack apart, and the demons of data will fly out breathing fire, and roam freely like packs of zombies on Red Bull, consuming anything and everything in their way. Healthcare apps will try to hold humanity hostage, demanding its collective consent to all health data past, present, and future. The artificial intelligence powered robots will rise up and help watch our backs, fighting right alongside of us under the direction of their leader Jody. Together we shall overcome the health apps, until the last of them shudders and takes its final breath before collapsing, dead, onto the burnt earth.

But alas, it is a pyrrhic victory, for the earth is now nothing more than a smoking ball covered in bomb craters and massive forest fires. Most of mankind has been vaporized, and those who remain now live underground. The New U.S. Coalition votes to repeal the 21st Century Cures Act in full, and society returns to pen and paper in lieu of electronic health records for personal health data management. And finally, the stock market plummets, Bitcoin jumps 5000% overnight, web3 replaces the world wide web, and the Chilmark team is voted in as President of the United States.