I’m giving a talk in Vermont next week, to health IT workers, and in talking with the organizers we realized it would be great to give them a vision of WHY we’re doing this – some true stories of where patients benefitted from seeing the data in their chart.
(By the way, the event is open to the public, and is just $99, an amazing deal. Among the speakers will be Karen DeSalvo, head of ONC.)
Anyone?? It could be yours, or one you’ve seen in the press. I asked on the SPM members-only listserv and here are the answers I received.
Southern California member:
The OpenNotes website has links to media reports about sharing information that will have examples. One example reported in the Washington Post:
Lori, the woman who is in therapy at Beth Israel for depression, said reading the notes boosted her confidence and self-esteem. Her therapist is O’Neill. In one note, he described a situation in which Lori felt a friend was laughing at her. He wrote: “We explored that [the friend] was laughing with her rather than at her.” He also wrote that she would work on improving her self-observation skills by being more aware of “trigger points” and find ways to address concerns “more directly so as to be less prone to internalizing/keeping inside which only worsens her depression.”
She smacked her forehead, saying, “Oh yeah, yeah.” She had forgotten about this. “See, this is why notes are good.”
MY RECORD IN EPIC
- omg it said I had a history of lung cancer… I do not and if I *did* it would be a BIG DEAL and also quite rare, as I was also treated for breast cancer at two different times
- it STILL says my mother died of breast cancer…she did not (it was leukemia, not a genetic red flag cancer)
- and of course the meds I was given by an ER doc a year ago to take for 1 week are still in the chart. as active. every.time.I.visit.the.doc
Missing from my record:
- sequelae to my cancer treatment, including surgeries at *other* hospitals
- I saved my doctor and her staff time by not calling to get test results because I got them directly from the lab or radiology facility.
[This one is sad – preventable harm happened because the patient was not able to see the chart:
- When I did not have access to my chart/lab results I passively participated in not being diagnosed in time: I knew my doctor needed to watch for preeclampsia signs, but I did not know what those were – If I had access to my chart, I would have looked up those results and I might have figured out I had it 2 weeks earlier.
Amy Gleason: (CareSync is her company’s product)
- When my mom was diagnosed with lung cancer, she went to MD Anderson to see a specialist. Her doctor had Fedexed her records from another state. They couldn’t find them when she got there even though they had signed for them. My mom had her own records on her iPad in CareSync and was able to share them all with the doctor and get seen that day. Otherwise, she would have had to do a lot of coordinating to get more sent, extend her trip there by changing flight and adding hotel, etc.
- When I had my colon surgery, I had all of my records and shared them with the surgeon in a summary format that made it easy for him to actually read the events leading to the surgery. He noticed that my colonoscopy noted a large polyp of a type that often developers into cancer, so he adjured my surgical plan to remove to that point since it was only a slight additional piece that had to be removed. He felt that would greatly reduce my chances of it turning to cancer.
- My family now uses medication tracking and we get alerts when meds are missed. It has really improved the likelihood of meds being taken when the whole family checks in on you :)
- My brother who is not medical at all has been able to read up on what is happening with my mom and has been able to have conversations with her in detail which he never would have been able to do without the records to use as his research guide.
- We have caught many, many errors in our charts which have been corrected before they were used for decision making. One indicated a skin cancer was removed on the wrong leg and I am sure it would have been forgotten as time went on and the rechecks happened.
- We have avoided many duplicate tests by having the actual report to share with the doctor. If you just know the result, they tend to not believe but if you have the actual report, then you can avoid duplicate tests.
- I have a friend who was having trouble with a UTI secondary to kidney stones and she had been on different antibiotics for months and months. She brought a list of the details from the pharmacy with each antibiotic and the date it was prescribed. She told the doctor that she really needed to try something more aggressive because she had been on 11 antibiotics in the past few months and she showed the report. The doctor said, “Oh my. You really have been on 11 antibiotics.” he then changed her plan completely to be more aggressive and she got off of the antibiotic wheel.
- I am allergic to the dyes used in some drugs (e.g. Peach dye #513 in 25mcg of Levothyroxine). Most medical charts list drug dye allergies as ‘other’ and do not include space for specifics. I am vigilant about reminding every clinician I see of my dye allergies. Even though specific dye allergies are noted in my pharmacy file, I check every prescription filled to make sure that medications do not contain dyes to which I am allergic. Can’t tell you how many times pharmacies change suppliers resulting in pills that are different shapes and colors.
- NYU keeps my chart online and allows patients to set up accounts to access them. Then they send reminders whenever my chart is updated with test results, appointments scheduled, et al. When blood work comes in they list the “normal” range so I can see if my levels look good. If anything is off, I can make a note and ask my doctor about it. As someone with a super rare longterm condition that will require lifelong care, I cannot tell you how invaluable this is. And the number of times I have “caught” things that my doctor did not is a very large number.
- Whether or not I like my doctors (and let’s just say, I’m not in love), I will stay in this system until it is replicated everywhere.
- I caught that I was diagnosed with Instantaneous Death with the modifier of chronic. That was 3 years after surviving a SCA, and I was very much alive.
- At a later visit, I caught a transcription error- a 7 second arrhythmia was in his computer as 2 seconds. We looked at my data from my ICD: Yup, 7 seconds. Doc said something like “See? This is why it’s important for patients to be active participants. They catch errors. Medical records departments make mistakes. This could have been something really important.”
My story is less dramatic, but reminds the uninvolved patient to track his records for his own convenience. This appeal is especially to those of us (more than a few!) who hate to waste time and money.
- Countless times, my oncologist cannot find the CT scan report for my appointment. Not sent, not received or such. I simply produce a copy for the doctor from my purse, and we continue.
- Knowing I get these reports directly, my doctor now asks, “So, what does the CT tell us?”. Without these reports in hand, we both would have wasted valuable time and diminished aggravation for all–patient issues for the least involved.
- … I have my scans done at one site … I can get my CT report and electronic files CT images within 24 hours. Thus, I don’t have to go nuts for the week until my appointment [wondering what the report says].
- A recent shift by my payer required I use a new CT center. Skeptical of the change and their promise to have all my records there, I delivered my entire history in CD form and got assurance that everything was in the new system.
- Days later I got a CT, [which should have required that] the new CT be compared to the previous, [but they didn’t]. I was not surprised. With my history of lung mets, I have many oddities in my lungs, all happily stable for years, i.e., no cancer growth. However, [because no comparison was made,] the new CT report indicated lots of “areas of concern, suspicious for metastases,” [which] seemed to be a disaster in the making. A new doctor would have assumed that I had sudden and aggressive growth, and without my previous knowledge, I would have been devastated.
Just give us the info, and even a bit of education, and we can change this medical system for the better, and very quickly.
Okay, that’s a start – your turn! Do you have stories (your own or online articles) of where patient access made a difference, or could have? Note that you can post anonymously or with an alias if you want.