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September 27, 2020 By e-Patient Dave 8 Comments

Winter’s coming. Time to talk about ventilation for coronavirus defense.

Last weekend a big shift in our thinking happened here at our home in Nashua, NH. As outdoor summer weather ends, we got serious about indoor air, learned a lot (with help from online friends), and made an informed purchase.

We’ve been watching the change of seasons; the outdoors has been a welcome way to be active while minimizing the risk of indoor crowds. But for people who have serious winters, adjustment is needed. Our clear and expressed intention is to survive through the next year until (we hope) enough vaccines and treatments exist, so we can all head back to more normal life.

So, what to do through the winter? We wanted to understand virus filtering, both for our home and for other buildings we might enter, and if air travel became necessary.

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September 26, 2020 By e-Patient Dave Leave a Comment

“My doc’s practice closed. Need my chart. What do I do?”

That’s a paraphrase of the starting tweet in a valuable thread today from a colleague in OpenNotes, Cait DesRoches. Here are the tweets. (I hope this all comes through on the blog; email subscribers, if necessary, click the headline to read this online.)

Hey med records experts – I need a consult. My sis needs her records from an independent prac that closed. She’s tried calling. Where should she go next to escalate the request? She’s in NYC @GraceCordovano @HealthPrivacy @ePatientDave
— Cait DesRoches (@cmd418) September 26, 2020

Austin TX health IT wizard Aaron Miri, one of the just-announced 30 Health IT Influencers, had several starter tips:

1) If the doc was affiliated / credentialed at any local health system or such; there’s a remote chance a copy of her records may be there especially if any labs were processed there, etc.
— Aaron Miri (@AaronMiri) September 26, 2020

2) did she have surgery or any outpatient procedures done? If so, any prior images and labs / notes may be there as some sites request H&P prior to surgery.
— Aaron Miri (@AaronMiri) September 26, 2020

You may also want to try the New York ahima chapter. https://t.co/md5H9P1k2g
— Aaron Miri (@AaronMiri) September 26, 2020

Then this, from Nate Apathy (a wildly inappropriate surname, if you read his feed):

If she opted in & the practice was contributing records to a regional health info exchange org, she might be able to get her records from the HIE. Would have to reach out to the HIE to which the practice sent records. The 6 in NY are connected via SHIN-NYhttps://t.co/83amk8mAvT
— Nate Apathy (@NateApathy) September 26, 2020

Then, in walks the veteran professional board-certified super-advocate Grace Cordovano with nine pieces of advice.

1)Great ideas! Also:
👉when did practice close? recently vs yrs ago?
👉dr should have provided letter notifying patients of closing; will specify how to access records; tried?
👉is there another dr now at the physical office location? often have these answers for a point person
— Enlightening Results 😷 (@GraceCordovano) September 26, 2020

2) In NY state, records typically retained:
📌adults: 6 years from date of most recent entry.
📌For children: 6 years from date of most recent entry, or 1 yr after the minor reaches 18, whichever is later.
📌Deceased patients: 5 yrs from date of death.
— Enlightening Results 😷 (@GraceCordovano) September 26, 2020

3) Were the visits paid for by insurance? Contact insurance company, ask for supervisor, explain unique nature of situation, request any records that may have been sent in support of claims payment to be forwarded to new dr.
— Enlightening Results 😷 (@GraceCordovano) September 26, 2020

4) Contact local chamber of commerce, borough hall, local dept of health: if it was a recent closure someone may know a way to contact/message the dr or former staff member with your request if you aren’t get call backs.
— Enlightening Results 😷 (@GraceCordovano) September 26, 2020

5) Did the independent practice have other drs on staff? If so, search for the other drs who may still be in practice at another location to see if they may have a contact for where records have been retained & how to access.
6) Is the dr on social media: check LinkedIn, Twitter, Facebook & try to DM.
— Enlightening Results 😷 (@GraceCordovano) September 26, 2020

6) Is the dr on social media: check LinkedIn, Twitter, Facebook & try to DM.
— Enlightening Results 😷 (@GraceCordovano) September 26, 2020

7) Search for any recent press releases that may have the drs work, activism, research, etc noted; contact article author/journalist to reverse engineer. They may in the least be willing to forward your message on.
— Enlightening Results 😷 (@GraceCordovano) September 26, 2020

8) If you need info on medications, contact pharmacy for prescriptions records.
— Enlightening Results 😷 (@GraceCordovano) September 26, 2020

9) If the dr was a specialist & there is a primary care dr, contact the primary care dr to see if records were forwarded to them for continuity of care purposes.
— Enlightening Results 😷 (@GraceCordovano) September 26, 2020

Deven McGraw, the one who first brought me to DC in 2009 (now at data-fetching startup Ciitizen), added:

Agree! @GraceCordovano did such a great job of identifying possibilities for piecing these records together. But also a cautionary tale – even if you don’t think you need your records now, get them now in case you need them in the future. Chances are you will.
— @healthprivacy (@HealthPrivacy) September 26, 2020

Observations please?

What lessons do we have here? I’ll start.

In the current US health system, nobody is responsible for whether anyone has a complete picture of your health history. It’s entirely up to you.
Furthermore, nobody is responsible for helping you get the information.
If you want to know reality on any medical problem, ask a patient who’s been through it.
Professional patient advocates like Grace are invaluable.

Oh, and one person on Twitter said: “This is disgusting.”

FHIR hopes to improve this.

Personally, this situation is one factor that drives my volunteer work in the HL7 FHIR community. We’re working on creating the software standards that will enable getting all of our data from virtually all medical records systems, so an event like this won’t rob you of vital history information that you paid them to generate.

July 29, 2020 By e-Patient Dave 5 Comments

My new work – Toronto’s PocketHealth: Cloud delivery of radiology images

^{Please put questions in comments at bottom of post. Thanks!}

Immediate, contactless delivery of your radiology images – no more CDs, no more need to wait around or pay Fedex or put on your mask to come in and pick up the disk. Imaging studies delivered in the cloud.

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July 22, 2020 By e-Patient Dave 2 Comments

America hasn’t, but Europe re-opened safely. We can catch up. Here’s how.

As a subscriber to Amazon’s Audible books, I get a really good daily digest from the Wall Street Journal: four selected articles plus an editorial. Not surprisingly, many recent articles have been about the virus, including two yesterday. The first was the usual roundup of statistics, with no holds barred on how bad it is in the US, due to stupid re-openings. The second had coverage from Europe that bears repeating: How Europe Kept Coronoavirus Cases Low Even After Reopening. Key points:

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July 6, 2020 By e-Patient Dave 5 Comments

Zeke Emanuel: “Reopen intelligently. Reopen safely.”

Ezekiel Emanuel MD is the profane, street-wise Chicago politician widely considered (among people I trust, anyway) to be the architect of the Obamacare legislation, not least because of his ability to design it so enough anti-reform forces would let it through. Those pragmatic compromises are the source of much distress among those people I trust, because the law’s not perfect. But it is perfect in the sense that the legislation passed, and has survived all attempts by vehement opponents to cut its nuts off (so far). So when he gives advice, I believe it will be pragmatic and street-wise. And probably blunt. But winning.

Here’s his advice, last week, on what activities are relatively safe or dangerous as this country continues re-opening for better or worse.

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June 26, 2020 By e-Patient Dave Leave a Comment

Olivier Karasira wins People’s Choice award at FHIR DevDays Patient Track

After last week’s FHIR DevDays conference, I blogged on Wednesday that Morgan Gleason had won the judges’ award in the Patient Innovator Track. There was another winner – for the first time we did a People’s Choice award, and it was won by Olivier Karasira, a man in Rwanda working on a remarkable project: “Turning Paper into FHIR in Africa.”

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