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Blunders and Wonders: Patient Access & CRISPR

Nick van Terheyden, M.D.
OCTOBER 18, 2018
Hello! I’m Dr. Nick, the Incrementalist, and I’m here today to talk about Blunders and Wonders.

Blunder: Open Access to Medical Records

This week’s Blunder: open access to your medical record. A recent study published in the Journal of the American Medical Association looked at US hospitals’ compliance with the regulations in the US for patients’ requests for access to their own medical records, and it made for some pretty sobering reading.



Dating back to 1996, patients have had the right to their medical record in the format they request, assuming the records are reproducible in the requested format at a reasonable cost. In fact, this one requirement is at the foundation of the Walking Gallery movement created by Regina Holliday and her “73 cents” mural. That was the price Regina was charged per page for copies of her late husband’s medical records.

That was 2009 – almost 10 years ago – and yet in this study, we find that hospitals are not meeting the mandated release timeframes, formats, charges, and availability of medical records. Costs for release of a 200-page record ranged from zero to $540. In an interesting twist, for those hospitals still stuck on limiting access to patients’ laboratory results, some patients proceed directly to medical records released directly from the phlebotomy lab to request the release of the results frustrated with hospital policy that either prevents or delays release directly to patients.

As Leonard Kisch famously said back in 2012, “Patient engagement is the blockbuster drug of the century.” If you could bottle it up and sell it, results would be so good that people would be falling over themselves to buy it. But engagement does not come in a data-opaque or data-missing scenario. So get with the federally mandated program and make the release of records and results an economic- and experience-easy process.

Wonder: CRISPR’s Mosquito Quest

This week’s wonder: The gene editing of mosquito genes to eliminate malaria. Malaria is a killer – a big one that’s killing almost half a million people a year. And it’s not just malaria. Mosquitos carry Yellow fever, Dengue fever, and West Nile virus, alongside Zika, which caused major concern across several countries in the last year or so.

The latest test of the CRISPR gene editing tool published in Nature Biotechnology featured a novel gene drive that spread specific genes through a population of several generations. Tests were conducted in a closed experimental laboratory setup, so no release into the wild, and targeted gender determination, basically stopping females form being produced after eight generations. This essentially crashed the mosquito population, and unlike previous attempts, no resistance was developed to the gene therapy.

Next stop is a larger, more lifelike test, mimicking tropical conditions and looking at the impact on the food webs and predators. Assuming continued success, this could be a major breakthrough on the road to suppressing malaria and other mosquito borne illnuesses, but that might not be for another five to 10 years.

Why so long? Well, although many of you might not be big fans of mosquitos, they are an integral part of our ecosystem, providing an essential food source for fish, other insects, birds, and they even pollinate plants. The unintended consequence of eradication might have a severe or catastrophic impact on our world, like we have seen with other with other well-intentioned human manipulation of ecosystems, like introduction of the toad, kudzu and wolf snail. So there’s hope on eliminating a major killer, but more work to be done.

Until next time, I’m Dr. Nick, the Incrementalist. Don’t let perfection stand in the way of progress.

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More Blunders and Wonders of the Digital Transformation:
EMR Interfaces and Continuous Blood Pressure Monitors
Unusable EMRs & Smartphone Ultrasounds
The Opioid Epidemic’s Tech Problem & Digitization of Health Records

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