Sending medical records with snowflakes
July 23, 2019 8:08 AM Subscribe
I have multiple myeloma, and I need to send my medical records out for a second opinion. The snowflakes are overwhelming me, and I could use some help figuring out the easiest way to do this. Details inside.
I was diagnosed with multiple myeloma nearly three years ago, so there are many test results from my care. The highly recommended doctor I want the second opinion from has a smaller office and is not part of a major University of BlahBlahBlah institution (not sure if that matters). I spoke to someone at his office about what he would want. She said all blood tests from the last three months, the most recent imaging tests (about a year ago), and my bone marrow biopsy (close to three years old). When I told her that a particular protein was slowly increasing over the last year and a half, she said it would also be good to have a few snapshot tests to show the increase and that if they have a chart showing the increase, that would be good too. For each time I get blood tests, there are at least four different reports.
When I go to the portal where I get care, to send records, they ask for dates, then give me a short space to be more specific. The specifics of this seem ridiculously complicated to enter into a small online space. The "snapshot" thing also seems very complicated, especially since I assume the person actually getting the records together isn't going to know which are the relevant tests (related to myeloma) and which are tests from my PCP. And I don't know how to figure out what to send for a snapshot either. My records also include a number of ER tests, which aren't going to be relevant here.
One other thing I've thought of is that all of my records are also sent to an organization called All4Cure, which tracks a large number of myeloma patients for research purposes and also to benefit patients, who can easily see all of their records online, including graphs of all blood tests (I have an assigned patient number on the site and anyone I give the number to can see my records - otherwise, it's anonymous). Some doctors use the All4Cure website, but the person at this doctor's office seemed unfamiliar with it. When I talked to her about it, she said I could send them a screenshot of the graph showing my results, so there's that too. I will add that the people at All4Cure have been super awesome and helpful and have even offered to advocate for me when I've had insurance issues. They have also handled every single aspect of getting my records to them after I signed a few papers.
This is seeming like a messy question, but if anyone can give me advice or ways to make this easier, I would much appreciate it. I'm feeling extremely overwhelmed by the whole thing, and I'm not super trusting of the staff at the hospital I go to to get it right even with very specific instructions.
I was diagnosed with multiple myeloma nearly three years ago, so there are many test results from my care. The highly recommended doctor I want the second opinion from has a smaller office and is not part of a major University of BlahBlahBlah institution (not sure if that matters). I spoke to someone at his office about what he would want. She said all blood tests from the last three months, the most recent imaging tests (about a year ago), and my bone marrow biopsy (close to three years old). When I told her that a particular protein was slowly increasing over the last year and a half, she said it would also be good to have a few snapshot tests to show the increase and that if they have a chart showing the increase, that would be good too. For each time I get blood tests, there are at least four different reports.
When I go to the portal where I get care, to send records, they ask for dates, then give me a short space to be more specific. The specifics of this seem ridiculously complicated to enter into a small online space. The "snapshot" thing also seems very complicated, especially since I assume the person actually getting the records together isn't going to know which are the relevant tests (related to myeloma) and which are tests from my PCP. And I don't know how to figure out what to send for a snapshot either. My records also include a number of ER tests, which aren't going to be relevant here.
One other thing I've thought of is that all of my records are also sent to an organization called All4Cure, which tracks a large number of myeloma patients for research purposes and also to benefit patients, who can easily see all of their records online, including graphs of all blood tests (I have an assigned patient number on the site and anyone I give the number to can see my records - otherwise, it's anonymous). Some doctors use the All4Cure website, but the person at this doctor's office seemed unfamiliar with it. When I talked to her about it, she said I could send them a screenshot of the graph showing my results, so there's that too. I will add that the people at All4Cure have been super awesome and helpful and have even offered to advocate for me when I've had insurance issues. They have also handled every single aspect of getting my records to them after I signed a few papers.
This is seeming like a messy question, but if anyone can give me advice or ways to make this easier, I would much appreciate it. I'm feeling extremely overwhelmed by the whole thing, and I'm not super trusting of the staff at the hospital I go to to get it right even with very specific instructions.
So, it won't be instantaneous (like if you did it yourself through the portal), but you should be able to contact the Medical Records office at your current doctor's office and request a copy of your medical records. At a large institution, sometimes this department is also called "HIM" or health information management. The usual turnaround time is 1-2 weeks and they will send all the information directly to your new provider (if you want).
If you are dealing with a large institution, please google "requesting medical records from Institution X". They will almost always have a webpage that goes through instructions on how to request your records without using the portal. You can also just call the main number and ask for the Medical Records department. (Remember, not everyone has access to a computer or the internet, and so even if they push the portal as the first way to solve your problem, you can always go "old school"). This usually involves you filling out an "Authorization for Use or Disclosure of Patient Information" form and emailing or faxing it to them, which authorizes the release of your medical records to yourself (for personal use), or to the HighlyRecommendedDoctor.
This document is usually very specific about what information you want to provide to the next physician. For instance, you can choose to provide a Face Sheet, History & Physical, ER Record, Lab Reports, Medication List, Clinic Notes, Consult Reports, Pathology Reports, Radiology Films, etc, etc. It will also ask you the dates of service you want to send. (It's okay to just check all the boxes, and put dates of service from 2016 to present.
MeMail me if you need more help.
posted by wearyaswater at 9:47 AM on July 23, 2019
If you are dealing with a large institution, please google "requesting medical records from Institution X". They will almost always have a webpage that goes through instructions on how to request your records without using the portal. You can also just call the main number and ask for the Medical Records department. (Remember, not everyone has access to a computer or the internet, and so even if they push the portal as the first way to solve your problem, you can always go "old school"). This usually involves you filling out an "Authorization for Use or Disclosure of Patient Information" form and emailing or faxing it to them, which authorizes the release of your medical records to yourself (for personal use), or to the HighlyRecommendedDoctor.
This document is usually very specific about what information you want to provide to the next physician. For instance, you can choose to provide a Face Sheet, History & Physical, ER Record, Lab Reports, Medication List, Clinic Notes, Consult Reports, Pathology Reports, Radiology Films, etc, etc. It will also ask you the dates of service you want to send. (It's okay to just check all the boxes, and put dates of service from 2016 to present.
MeMail me if you need more help.
posted by wearyaswater at 9:47 AM on July 23, 2019
I deal with medical records collection as a regular part of my job. The best way to get results is to have an "insider" advocating for you and following up on records collection. Based on your question it sounds like the best way to do that is to go through All4Cure. I would contact them and ask for assistance. It sounds like they are familiar with your condition and will know what is needed, and if not it's a lot easier to explain over the phone than in a tiny field on a provider's website. Best of luck!
posted by zeusianfog at 11:36 AM on July 23, 2019
posted by zeusianfog at 11:36 AM on July 23, 2019
Does the large university that your care is currently affiliated with have a nurse navigator? Depending on the organization, they can be very helpful. From time to time, they will help my patients (I am a hematologist/oncologist) understand how to access various aspects of their care, connect them to support organizations and patient assistance, etc. But they have also helped patients get their records, and they have also come along to second opinion appointments to take notes and help ask questions. They may be able to help you get your file and come up with a sort of packet that makes the information easily transmissible and portable (instead of sending a PDF the size of a phone book by fax, or worse, making you carry a manila envelope).
IANYO but if you were seeing me for a second opinion for myeloma, I would want:
1) Any and all pathology reports
2) Your myeloma labs at time of diagnosis (SPEP, IFE, kappa/lambda light chains, urine protein electrophoresis and urine light chains, beta 2 microglobulin, and quantitative immunoglobulins, as well as CBC and CMP).
3) Any and all imaging related to your myeloma (including but not limited to x-rays, PET scans, CT imaging)
4) Any documentation of chemotherapy that you received
5) Any documentation of radiation that you received
6) Your most recent progress note.
I suspect that after 3 years, your file might be rather large.
As an aside, the way that I write my progress notes, I keep a running history that includes diagnostic history, imaging, pathology, and treatment history in the notes. This helps me keep things compact (and also helps such that if I have to send a record to someone, they have a "treatment biography" that is (usually) confined to a page. Your oncologist may also do this, but the variation between how we all write our notes is wide.
Best of luck - please feel free to MeMail me if I can be of any help here.
posted by honeybee413 at 12:32 PM on July 23, 2019 [1 favorite]
IANYO but if you were seeing me for a second opinion for myeloma, I would want:
1) Any and all pathology reports
2) Your myeloma labs at time of diagnosis (SPEP, IFE, kappa/lambda light chains, urine protein electrophoresis and urine light chains, beta 2 microglobulin, and quantitative immunoglobulins, as well as CBC and CMP).
3) Any and all imaging related to your myeloma (including but not limited to x-rays, PET scans, CT imaging)
4) Any documentation of chemotherapy that you received
5) Any documentation of radiation that you received
6) Your most recent progress note.
I suspect that after 3 years, your file might be rather large.
As an aside, the way that I write my progress notes, I keep a running history that includes diagnostic history, imaging, pathology, and treatment history in the notes. This helps me keep things compact (and also helps such that if I have to send a record to someone, they have a "treatment biography" that is (usually) confined to a page. Your oncologist may also do this, but the variation between how we all write our notes is wide.
Best of luck - please feel free to MeMail me if I can be of any help here.
posted by honeybee413 at 12:32 PM on July 23, 2019 [1 favorite]
Seconding that the best thing to do may be to call the medical records office at your institution. They may require that you fax over a signed release form (which they can help you find in the first place), but this will be the most direct way to give your thorough request to an actual human and answer any questions they may have before they start digging up the files.
posted by ocherdraco at 1:38 PM on July 23, 2019
posted by ocherdraco at 1:38 PM on July 23, 2019
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posted by WeekendJen at 9:12 AM on July 23, 2019