How To Maintain Medical Records- PHR / EHR

[CDRE]

Many of us maintain financial records using spreadsheets, Quicken, Mint, etc., but when it comes to maintaining records for one's personal health, there seems to be limited discussion. I have historically relied on the various medical offices/hospitals to keep "my" record but recently found that some have been destroyed (too long, system update, etc.). I would like to begin to keep all my records within my local system rather than the cloud. I took a quick look and found a website that defines Personal Health Record (PHR) and Electronic Health Record (EHR) along with a brief description of 36 options to maintain your records: https://www.medicalrecords.com/personal-health-records
A big concern, especially for cloud, is long term support. Maybe there is a template spreadsheet or database somewhere that could help?


Your thoughts on maintaining personal medical records are appreciated!

 

[PaunchyPirate]

I’ll be curious to read the results of this thread. I previously had input quite a bit of data into Microsoft’s Health Vault only to have them discontinue it a year or two ago. I have some data in Apple’s iOS Health app on my iPhone, but I consider it an incomplete history.

An ongoing issue is integration with my medical providers. The linkage just isn’t there across the board and I’m not sure it ever will be in our nation of HIPAA and decentralized, for-profit medical care.

For now, I just keep all my medical records on paper (when I have a copy available to me) and file it away ordered by year.

Edited to add: I see Microsoft’s Health Vault is still listed on the page provided in the OP’s post. It makes me wonder how old/accurate that list is.

 

[MRG]

Good question. Medical records being transferred is a joke. Vendors don't want to support it for many reasons mostly $$$. Of course in paper days it wasn't better just different.

If you think your medical records are intact I'll be offering some oceanfront properties in Colorado.

 

[braumeister]

I made a spreadsheet with a column for each type of blood test (WBC, RBC, etc.), the second header row contains the normal limits for that test, and each subsequent row is for the date of the test. The last column is quite wide for entering items that are seldom done.

Since few items get tested every time, there are blanks in the sheet, but that's OK. My numbers go back decades, so I can keep track of trends.

There is a conditional rule that if the number in a cell is within normal limits, the cell is green, and I like to see lots of green.

The nice thing about this is that it's simple to select a column and make a graph of the trend over time. I occasionally do that to show my doctor and he loves it.

 

[H2ODude]

Other than a few injuries and procedures my medical records are pretty much just the lab work done annually. Our local network has "Mychart" that lets you log on and see all of that, graphs it, and has a pretty complete telling of procedures like colonoscopies, an echocardiogram I had, etc. I've actually been pretty surprised at the completeness of the picture it paints. Assuming I stay in this system and they don't have a crash it seems to fulfill all the needs i'd have to review what's going on.

When we took care of MIL that was a whole other story. Think it was pre
Mychart and trying to keep up with what her multiple docs were prescribing was a nightmare. Had to watch the care like a hawk. I may not recall the drug correctly but think her neurologist had her on lisinopril for essential tremors, and every damn time she'd go in hospital someone would change it to another drug, because lisinopril was also a blood pressure med and they preferred some other drug for BP. Didn't do diddly for tremors. There were other examples where if we had just taken her in, ignored what was being done, she would have had some serious problems. Just seemed like it was multiple docs doing their own thing without any attention to other specialties. I could be wrong but wasn't there a time when the patient's GP kept watch over the hospital care for consistency and coordination? Guess I'm just old.

 

[Lakedog]

I made a spreadsheet with a column for each type of blood test (WBC, RBC, etc.), the second header row contains the normal limits for that test, and each subsequent row is for the date of the test. The last column is quite wide for entering items that are seldom done.

Same here - I developed a spreadsheet years ago and update at least annually but typically whenever I obtain any additional testing/labs.

 

[Venturer]

Years ago my family doctor was just that ---my family's Dr. he retired and since then it has progressively got worse. We moved 10 yrs. ago and didn't know any Dr. here so we ask our Dsnlaw who his family used & started using him. Last year this Dr. joined another larger practice and then announced that he no longer would be doing "Hospital calls". Now if we go into hospital we have to use the "Hospitalist" and then see our family dr. after we get back out. I hate it but that is how it is here, so we have to keep our records ourselves.

 

[athena53]

Same here - I developed a spreadsheet years ago and update at least annually but typically whenever I obtain any additional testing/labs.

That's also my system. I get bloodwork done quarterly and have values going back years- same for BP, which gets measured every time I donate blood. When my GP told me my white counts were on the low side of normal I was able to tell her it's always been that way.

I find the records provided on-line by my local system to be spotty. In June I had a stress test, calcium scan and echocardiogram. The echo results noted mitral and aortic "regurgitation" (backflow) but didn't include the ejection fraction, a crucial measure that tells you just how much blood is getting successfully ejected out of a chamber. The calcium test just noted a small lump of calcium in a lung, likely the result of pneumonia I had years ago and "no other extra-cardial calcium noted". Not a word about the extent of calcium in my arteries. The stress test results showed an alarmingly long list of all the crap they pushed into my IV during the test (nitroglycerine? ) but no conclusions.

At the six-month follow-up I asked my cardiologist for more details. Calcium score was 1 (zero means they couldn't find any and 100-300 is OK) and ejection fraction was 65-70%, which isn't perfect but isn't alarming either.

I really could have used those two pieces of news 6 months earlier. I really should have called once I realized what important info was missing.

 

[pacergal]

Routine stuff I don't worry about. Annual lab tests, X-rays, etc I have printed out and keep in a folder just for my own review to see trends.
Anything more than 10 years old is most likely not around anymore. As the medical profession moved to EHR, each provider group decided what was valuable to enter. Your entire history was not transferred over (at least that has been my experience in the medical field)
The old inches thick paper chart is no longer a thing.

 

[Aerides]

Quest has a pretty good historical view for bloodwork, which is nice for comparing, so I go there any time any doc wants something done (have a place 2 miles from my house).

MRI/Xray records are tricky. I get a CD at the time but the full report goes to the doctor, and usually I get lucky if I get a paper version. Similarly, I had an EMG test this summer with tons of info, but only a paper print out for me.
Same for doctor notes and comments during a visit - each office keeps their own but you can ask to get access or print outs.
+ I have a lovely set of scans of the inside of my knee from a surgery last year, which predict a TKR in a few more years.

Everything is in different formats, so a template wouldn't help me really.

I have started keeping a folder with all this, can't be bothered (yet) to scan and save it all, but if I do I'll probably use Google Drive.

 

[Montecfo]

I scan key test results and keep locally electronically.

 

[CDRE]

OP here. I too have a spreadsheet to track blood test results. However, there is much more to tracking a person's health than blood work. I'd like to track much more and also be able to easily share when necessary (immunizations, medications, diagnosis, X-ray, etc.).

 

[foxfirev5]

With the MyCharts system in place at my provider I no longer see any need to keep my own records. I actually was amazed at how much of my limited history they already had on file when my old PCP retired. I'm pretty sure his old paper records would not be reviewed as well as any spreadsheet I might produce.

 

[RetMD21]

Mycharts is a product of Epic and won't necessarily follow you if you go to a hospital or clinic that uses another vendor's system. I am planning to do a spreadsheet to track medical problems. It would be great to have a way to export personal records in a HL7 compatible format so that they could be imported into any EMR. I would like to avoid filling out paper forms. The stacks of random paper that people bring into medical offices are a pain in the neck. I think there is a move to try to require the data transfer among EMR actually useful but that will take time.

 

[RetMD21]

FWIW, the Mayo clinic has a list of things that you might want to record. It is surprising how many people don't know when they had surgery or where. Sometimes that information is helpful.

https://www.mayoclinic.org/healthy-.../in-depth/personal-health-record/art-20047273

 

[Freedom56]

Your healthcare provider should have an online portal that keeps track of you medical history. We use:

https://my.uclahealth.org/

and

https://www.cedars-sinai.org/mycslink.html


Both sites are linked together and you can access all your test results, clinical notes, after visit summaries, prescriptions, vaccinations, billing, appointments, etc... You can also download all the information to your PC and keep it locally.