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.)
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:— Enlightening Results 😷 (@GraceCordovano) September 26, 2020
👉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
2) In NY state, records typically retained:— Enlightening Results 😷 (@GraceCordovano) September 26, 2020
📌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.
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.— Enlightening Results 😷 (@GraceCordovano) September 26, 2020
6) Is the dr on social media: check LinkedIn, Twitter, Facebook & try to DM.
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
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.