Words Matter: My Medical Records

Soon after I was discharged from McLean in 2011, I submitted a request to get a copy of my medical records. A huge pile of paper was mailed to me. When I first read them, I was overwhelmed with the “professional,” “structural,” and “brief” tone they have. I was also sometimes surprised by what was documented. Recently, I talked to a research doctor and mentioned that I had read my own medical records. She did not expect that and said, “Reading one’s own medical records is not easy. They are usually technical. And rushed. Often with mistakes.” I agreed. Very often,  a lot has to be done in a very short time.

However, these medical records shaded some important light on how I was perceived and expected to behave when I first came in contact with the caregivers at McLean, people who knew about mental illness but did not know me personally. That is invaluable.

*~*~*~*~*

Admission Note

Identification Data and Chief complaint: This is a 37-year-old, Asian-American female with a history of schizophrenia, who presents for her first McLean, and likely her first lifetime hospitalization for increasing psychotic symptoms in the context of stopping her Zyprexa. 

History of Present Illness: Please note that, on arrival to the CEC, the patient was very sedated and unable to participate in the interview in a meaningful way. She nodded “no” to questions about suicidality and drug allergies but was unable to really give much information beyond that overnight. (Mindy’s note: This was in the middle of the night after I went to the ER and was moved to another location that I don’t remember at all.) The remainder of this note will come from information obtained in the APS. This is a 37-year-old, Asian-American female with a history of schizophrenia with no previous hospitalizations, and no significant past medical history, who was brought in by EMS after the patient’s friend called 911 because the patient had been worsening in terms of her schizophrenia. The patient has been off of her Zyprexa, which was at a dose of 2.5 mg daily. However, her symptoms worsened in the past few weeks. Per her friend and the patient, she recently quit her job because she “wasn’t performing well” and has been spending the past week at home alone with increased auditory hallucinations hearing six or seven different voices. Per her cousin, the patient has been afraid of being attacked and was reusing to allow her parents to visit. (Mindy’s note: this is not accurate. My parents does not usually come and visit me. They live far away. It was strange that they wanted to drive 5 hours on a weekday without advance notice to visit me! Their visit is the unusual part, if you knew us.) Also, has been worried about being stalked. The patient’s parents report concern about the patient being at risk for suicidality given her degree of confusion and distress. (Mindy’s note: I was shocked when I saw this! Shocked. Obviously, this was from someone who did not know me well.) One month ago, the patient was brought to the Emergency Department status post taking sleeping pills, which she reports was not an overdose, but the patient left from the Emergency Room without being hospitalized. The patient denied suicidal or homicidal ideation in the APS but reports “perhaps” that she has had command auditory hallucinations of suicide. (Mindy’s note: Again. Shocked and not sure who said this!) She denies visual hallucinations or ideas of reference. She reports sometimes feeling stalked and sometimes feeling like she can read people’s thoughts, “But you can’t confirm that sort of things.” Collateral from the patient’s close friend and coworker report that this coworker has been in touch with the patient’s family, and they believe that she has been off of her medication for the past six months. One month ago, her condition worsened, and she reportedly became confused and began calling people in the middle of the night (Mindy’s note: I called two people. One at midnight one at 2am.) saying she was hearing voices and being talked, and around that time she took the sleeping pills. They tried to get her to the ED, but she ended up running away. (Mindy’s note: I did not “run” away. I walked away on my free will after speaking to someone who wanted to me follow her to the ED. I disagreed with her suggestion.) The coworker feels that the patient is not safe at home, and the friend called 911 today because the patient did not recognize her when she saw her. (Mindy’s note: I am pretty sure this was referring to a phone call…I did not see any friend that day.)

Mental status examination on admission: The patient is a thin, Asian-American woman in hospital attire. She is sedated and minimally responsive to verbal stimuli. She will nod “yes” or “no” to safety questions, but she refuses to answer further. No speech is observed. Her mood, thought process, and thought content are unable to be assessed. Thought content likely is significant for an underlying psychotic process, and this interviewer questions if some of what appear to be sedation are underlying psychotic symptoms. Insight and judgement is limited by sedation at this time. Attention, orientation, and memory were unable to be assessed secondary to the patient’s sedation.

Inventory of assets: The patient is reported to be bright and articulate with good social and family support.

Formulation: This is a 37-year-old female with a history of schizophrenia currently decompensated with increased psychotic symptoms in the setting of stopping Zyprexa with hopes to conceive a child. Her family and friends are concerned about her safety and recent erratic behavior and brought her to medical attention. In the APS, she was given 5mg of oral Zyprexa and is currently sedated in the CEC and unable to participate in the interview in a meaningful way. This lack of participation may also be representative of her underlying psychotic process. She requires an inpatient level of care for safety, stabilization, medication re-initiation and management, diagnostic clarification, and aftercare planning.

Initial treatment plan: To admit the patient to AB2. Estimated length of stay of seven to 10 days. We will put her on 15-minute checks while restricted. Initial short-term goals are safety and stabilization. Recommended interventions include individual case management, group therapy, milieu therapy, pharmacotherapy, family meeting, medication management, and psychosocial interventions. (Mindy’s note: This is amazing! A plan of action!)

Note: Some part of the admission note report has been emitted here.

*~*~*~*~*

As someone had a broken brain, I was not consulted. They couldn’t; I was sedated. But they had to do something. The had to help me. My life and health status was pieced together by friends some knew me more than others. Mixed in this report includes some facts, some assumptions, and some of their personal worries projected onto my situation. However, very often, records like this overrides voices from people like me. It was my (lack of) voice against everyone who loved me.

Reading this report, I also gained a tremendous respect for the attendings at the ER, CEC (Clinical Evaluation Center at McLean), and APS (Acute Psychiatry Service at MGH).  Overnight, they had an idea of who I was. They made the best decision about my life by digging up as much information as they could. They do this every day! They help people.

I am lucky in that I gained my own voice back. As the caregivers looked after me for two weeks, they formed first-hand perspectives about me. I think they got a better picture of me. Not everyone is so lucky and gets a chance to express who they truly are. Sometimes, medical records get passed on and on.

Let us all be mindful of what we project on others, say or assume about them. Words matter.

Look At All These Data

Since my last post on PHR2, continuing with my interest in personal health records , I downloaded Partners Healthcare Patient Gateway app and set up Apple Health app. Patient Gateway is the system that my primary care doctor’s office provides for free.

The Patient Gateway app allows me to contact my doctor’s office directly and easily through the app without having to pick up the phone and call. My messages were always responded within 24 hours. In addition to Messages, I now have access to my Appointments, Appointment Details, Provider Letters, Test Results, and Medications. I can also View and Pay Bills. I now have a wealth of more detailed information from my doctor’s office that I did not have before. I feel that I have become an insider!

The Apple Health app connected directly with my primary care doctor’s system. The app is automatically populated and updated with my records from the doctor’s office too. One part of the app is the Health Records. It keeps track of different kinds of records such as Allergies, Clinical Vitals, Conditions, Immunizations, Lab Results, Medications, and Procedures.

I am excited to have access to my own records via these two apps. If you remember my analog of the personal finance systems (see post: Personal Health Records), as an ePatient, my experience has definitely been upgraded. I now have access to my records digitally, automatically, and in a centralized place online. Patient Gateway app also allows me to take actions for my health via the app. Apple Health app also allows tracking of additional personal healthy data outside of the doctor’s and hospital visits when I am not sick or doing a check-up. There are more functionalities that I need to check out!

This is all very exciting! Great progress made for individuals like me! As the technology and access advance, I can now be better informed. I also have the opportunity to learn more about my own health. I already feel more in touch with my own health because of these two apps.

With better data, now the question is what do I and the apps do with this knowledge. As an ePatient, am I making better decisions about my own health, and ultimately, am I becoming healthier? Can I look at all these data and make sense of my health status from it all? Can my care be better coordinated, i.e. to reduce duplicated tests? Can care transition from doctor to doctor be easier, i.e. changing primary care doctors, from primary care doctor to specialist, or from specialist to specialist? Can the apps add smarts such as personalization and recommendations? Can mental health records be included? What about records outside of doctor’s office such as from research and third-parties like 23andMe? Can we eventually get to family history and managing risks?

Really looking forward to more updates from Partners Healthcare and Apple! This is a great time to be an ePatient!

P.S. I have also downloaded the CVS and BCBS apps. Will have to learn more about them next! Rounding out the pharmacy and health insurance!

PHR2: Initial Concept

How personal health record information is presented back to the users after the information is recorded is very important. Nowadays, users expect instant value after a few clicks here and swipes there. Let’s ignore how the data gets into this PHR2 for now. (I know that’s big! I do!) I have some thoughts on what would be helpful to me.

IMG_9938View 1: Dashboard

User health goal: A good habit for everyone to have is to get regular yearly check-ups for physicals, vision, and dental. That is the basics. It is needed for a lifetime.

User need: It would be so nice to be able to see in one place, how I am doing with my goal. When did I do what? Who did I see? When do I need to do it again?

Concept: Instead of listing personal health records by data types which I had seen in a view solutions, we can list the information base on the type of care we received or want to get. The information should be how we think about and use health care. In this view, the most recent visits (or I can them health events) are listed. I can view details if I want more information. For people with chronic conditions, this view would be longer and more specialized to a specific condition.

.

.

IMG_9939.PNGView 2: Timeline / History

User health goal: I want to maximize my insurance benefits. I want to track my deductibles for the year. I want to know what’s coming up.

User need: To manage my health, I need to know what I did in the last few months or year. How many visits did I have? The more I have to manage, either as a parent for kids, as a caregiver for my parents, or as someone with a chronic condition, the more coordination, I need to do. I want to see in one place, what health events happened and are scheduled.

Concept: Yes, I can always look at my Google calendar. BUT this is one place to look at all my health events. This view also helps coordination with different types of cares or visits.

*~*~*~*~*

I am not a UX designer at all, but I work with many very talented designers and strategists. I mimicked what they do and talked to “users,” aka, my close friends. Based on those conversations, I created these simple sketches for PHR2 for fun and to advance my own thinking!

Let me know if you have feedback! Hey, maybe someone at Google or Apple will see this and has an opinion?

Personal Health Record 2

When I was in my early twenties, I found a solid mass in my left breast. The mass was removed at a day surgery. Lucky for me, it was a benign cyst. I don’t remember the exact date of when this happened. But every time I had to explain my health history, I mentioned this fuzzy memory. If I ever forget, nobody would know about this. Part of my health history would be missing. I might also be missing the opportunity to take actions against future breast cysts or tumors.

Recently, I participated in a study for schizophrenia and went through MRI scans. The researcher found a slightly significant white dot in my brain scan and notified me. She also sent me a report and a CD of all the images. If one day I need this information, I hope I remember. I have not idea where the physical report and CD is at home.

When Google, Microsoft, and WebMD released their PHR a decade ago, I was excited. Finally, I would have a place to organize my health information. I tried them and found them clunky. I decided to stick with my mess and did not end up using any of them. Since then, there have been other attempts at creating a personal health record but nothing has taking off yet.

I often think about this problem – digitizing and organizing my health record. The analog for me is how we went from balancing our checking account on paper to using Quicken to manually enter each transaction based on physical receipts, to using banking websites that automatically track our spending and saving, to using Mint which provides an integrated view of multiple financial accounts, to using Betterman where we can easily make investment decisions. We have come a long way with how we manage money. So what about health?

I believe that we all need to organize our own health record. I suggest that we create PHR2, a second generation of a personal health record software solution for the everyday consumers. Here are the whys.

Why do we need to have our Personal Health Record (PHR2)? 

  • Take control of my and my family’s health
    • Prevent loss of part or all of my and my family’s health history
    • Understand our current health status and risks based on our health history
    • Increase my health literacy and make informed health decisions
  • Be a better patient or caregiver
    • Manage my chronic or acute conditions more effectively
    • Avoid serious drug interactions by knowing my medications
    • Know what to do next by understanding my test results
  • Be prepared in an emergency
  • Stay healthy. Can take preventive measures
    • Able to validate the accuracy of my records and history. Find the gaps in my doctor’s medical records

How is it different from electronic medical records (EMR)?

EMR often contains medical terms and jargon that everyday consumers may not and don’t need to understand. EMR is a record keeping system for health professionals, not patients. I don’t believe that we can put a patient-facing interface on top of an existing EMR and call that PHR.

Existing solutions?

I came across PicnicHealth and found their model very interesting. Patients pay Picnic a fee, and it will try to get all of your medical records from all of the different hospitals and health systems in your life. For more details, see Tech Crunch.

Apple announced earlier this year that, Health Records is going to be a new menu in the Health Data section of the Health app. You’ll be able to add any file to this menu as long as it’s a CDA file (Clinical Document Architecture). Some hospitals already email you those files or make them available on their website. But Apple wants to automate this process. For more details, see Tech Crunch.

On the other hand, why do we not need it right now? 

  • I am fairly healthy and don’t interact with doctors too often
  • I have not done anything and that seems to be okay
  • I don’t have time to manually organize everything
  • I will depend on my memory if someone asks me about my health history
  • I find it easy to keep a notebook
  • The doctor or someone has my information and that should be enough

Taking control is definitely not easy. Health is not as straightforward as money. But I definitely see consumer needs, pain points, and opportunities. I am waiting for the right, simple, and easy solution to be created. If I win the lottery, I would try to build a PHR2 for us! Meanwhile, I am keeping a close eye on what becomes available for everyday consumers.