Request: true stories of where patient engagement in the chart made a difference

Vermont IT Leaders logoI’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.”

Northern California:


Inclusive errors:

  • 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.”  

Peggy Zuckerman:

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.



Posted in: e-patient stories | medical records




15 Responses to “Request: true stories of where patient engagement in the chart made a difference”

  1. When my daughter’s doctors were stumped, I aggregated the blood work data from three hospitals (data from the other hospitals were faxes or photocopies of her medical record). I spent some time researching via google what could be the cause of the high blood potassium levels. I finally found pseudophypoaldosteronism type II and emailed the Chief Nephrologist saying “Alexis has Pseudohypoaldosteronism Type II, who can help confirm my diagnosis and treat her?” Thankfully we had very quick resolution to that medical mystery once everyone was engaged!

    • Great story, Catherine!

      Question: what was the doctors’ reaction? Did they welcome or resent your participation?

      And did you SAY “Alexis has…” or did you suggest it, like “It looks like she has…”?

      • Marge says:

        This reminds me of the “doctor-nurse” game where the nurse would prompt the doctor to make a discovery and then he would take credit for it. There were articles written about this.

        Let’s encourage patients to be direct with their language.

        • Could you say more, Marge? I think I understand the doctor-nurse thing you’re talking about (it happens all over humanity, I think, not just at the hospital bedside) but I don’t see the connection here.

  2. I am a dual citizen of the US and Israel. Until now, most of my medical needs were taken care of by the national health system of Israel, which shares records with patients online.

    I recently had melanoma surgery in Israel, I and was told I needed a follow-up “risk reduction surgery” to enlarge the cancer-free margins. I was planning a five-month visit to the US, where I have Medicare.

    The Israeli hospital doctors were enthusiastic about my plan, so cooperative, they gave me a lengthy surgery/pathology report in English and even gave me my own pathology slides to bring to the USA. As a result, the American surgeon did not have to repeat any tests, and actually give me personally-tailored advice not to bother with surgery for now, just do Close Monitoring. Access to records was absolutely crucial.

    • Great example! One pattern I’m noticing here is care coordination between providers – I’d summarize it as “Care can’t possibly transfer well if the data doesn’t come too.” And since doc-to-doc workflows aren’t reliable yet, “let patients help” is the best available remedy. Yes?

      • In regard to the inefficiencies of doctor-to-doctor workflows, consider the ever greater problem of institution-to-institution workflows, as is often a problem with second opinions, or just within this highly mobile society. The ONLY constant element in the mix of variables is the patient.

        Basic common sense for most situations is the argument. The value of the patient input, in addition to that of the accurate record, is, per a researcher at the U of Miami, “otherwise, we lose the privilege of their insight”.

        • Yes – as you’ve probably heard me say too often, when someone objects to the idea of “let patients help with data quality,” I say:

          “Who has more at stake
          in the accuracy, completeness,
          and availability of the
          medical record
          at the point where it’s needed?”

          The only response I’ve ever seen that makes any sense is the idea that patients wouldn’t understand all this medical stuff. And examples like yours make it easy to illustrate that that ain’t so true as they’d think… same for the whole OpenNotes project.

  3. Teresa Masters says:

    10/11/11, I had breast cancer surgery during which time a lymph node was removed. i was told to never allow blood draws or pressure done on the left arm.
    My medical care is via a University Health Care Center. I have been on Electronic Records for several years. The cancer center was/is slow to join, as is the Eye Center.
    There is still no Alert to advice staff taking blood pressure nor IV or blood tests to avoid the left arm. Were I unable to communicate, how would anyone know, including EMT’s.
    Yes, I have asked to add my alert to the system .

    • Thanks, Teresa. This underscores yet again the importance of every patient knowing what’s needed and being responsible for it. Good for you.

      Have you tried talking to their legal department about any liability they might incur from not entering the information after your repeated requests?? They ARE required by HIPAA regulations to fix mistakes that you point out.

  4. Jim Skinner says:

    I got the third level of a intense screening process for a trial for my colon cancer. In that third interview the doctor tole me I would be a good candidate for a drug that would shrink my tumor. Apparently they had not looked at my medical records because there was no tumor to shirk post surgery. Whoop. Guess the docs should actually read the data they have first. This was a first rate center in San Antonio and the guy next to me had flown all the way from Greece for the interviews. Sorry but more technology will not solve this problem, ever.

  5. My Health Insurance company provides me with access to my medical billing online through their patient portal. Every time a health claim gets processed, I receive an email informing me to view information to ensure it is accurate. While viewing I noticed which physicians had attempted to “double-bill,” and even several who seemed to have billed my insurance for time/services I don’t recall having ever received! I’m able to contact my health insurance provider via email through my patient portal and inquire about billing claims from physicians. LOVE having this option available to me. It helps keep track of my costs/medical spending and allows me to address medical errors should they appear on my record.

    I wish the same could be said for my Health Clinic patient portal. It is frustrating to not be able to view my recent lab results, xrays, and procedures online. I am unsure of how to have access to my EHR through my patient portal. It seems like I have to be the one to request paper records and input my data manually in order to have a EHR. Any thoughts on how to solve this issue would be wonderful. I have Montefiore, which I believe uses Relay Health as an interface to provide a patient portal for their patients.

  6. Peggy Kriss says:

    I am a clinical psychologist and provide all of my psychotherapy clients with their notes on a private secure portal. One client mid week read her note from the last session in which I commented How her depression had started to lift, and that she had been feeling better for around 4-5 days. She told me in the next session How relieved she was to read that note midweek. That day, in reading the note at home, she was feeling a bit down and could not remember when the last time was that she felt better. When she read the note- she felt a huge sigh of relief, realizing that not all the days were so bad and that perhaps she was not yet able to recall her good days. As a result, she decided to keep a log of her moods- resulting in greater patient engagement.

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