Mary Sampson waited in Exam Room D for her bimonthly blood pressure and blood sugar check. She was a relatively new patient in my practice who I had only been seeing for a few months. Upbeat and proud of the great control she maintains of her hypertension and diabetes she always greets me with a hug and a smile and asks about my family before I even get a chance to ask about her. Her eyes were red today and she had been crying. “I am so worried”, she said. I cancelled my last two appointments because I couldn’t face the bad news. She held out an envelope for me to take it. It was a letter from me, and I was mystified by her reaction. Had I sent her a letter with bad news and forgotten it? I took the envelope from her hand and pulled the letter out to read it aloud. Mary sat with her eyes closed and her hands clenched together.
“What is wrong?” I asked her.
“Just tell me what I need to do, OK?” She replied.
I looked at the page I remembered spitting out of our electronic health record one evening at home. It was the letter I send all my patients after I receive lab results, diagnostic test results or consult reports. This one was formatted to report on normal mammography results.
I read it our loud.
“Dear Ms Sampson,
I am writing to report that your recent MAMMOGRAPHY WAS NEGATIVE. You should schedule your next exam in approximately 1 year. If you have any questions or concerns please feel free to call me at the office or on my cell phone.
Neil Calman MD.”
“What do I do now?” she asked again.
“You wait and get another exam in about one year”.
“But what about the Negative test now?”
“Negative is normal!” I exclaimed. “Did you think it meant you had a problem?
Mary was speechless. Tears flooded down her cheeks. I stood up to hug her and repeated “I am so sorry”, over and over again. She slowly regained her composure after leaving a pile of damp tissues on my desk.
“I never got a letter from a doctor before, she said. I looked at it quickly and saw the word ‘Negative’ and I thought I had cancer. I have been so worried the past two months I didn’t even want to show the letter to my husband. He doesn’t know anything about this. He has a bad heart and I thought this would kill him.”
“Mary,” I said reassuringly. “Everything is perfect.”
Unintended consequences of progress, you might call it. But as with many seemingly trivial mishaps in the course of primary care practice, there are important messages contained within.
In 2002, as President of the Institute For Family Health, I led the implementation of EPIC (Verona, WI) one of the Nation’s most sophisticated and highly rated (KLAS Market Intelligence) health information technology programs in our network of thirteen community health centers in the Bronx and Manhattan, New York. Contrary to many horror stories in the health information technology literature, the 90 physicians, social workers, nurse practitioners and family medicine residents who work at the Institute welcomed this development heartily and immediately put some of its most powerful tools to work. Through training classes, on line instructional sessions and individual mentoring, in a few months we were almost completely paperless.
One of the most exciting parts of implementing electronic health records is how they help our communication with patients - at least most of time.
Restructuring Workflows to Incorporate the EHR
Prior to the implementation of the EHR we had done everything we were all taught to do to keep patients separated from their medical record and the information it contains. We kept charts outside the exam room door so patients could not look at them while they waited. We wrote in a complicated professional style with abbreviations that often were ambiguous and were sometimes not even understood by our colleagues when they covered for our patients and tried to use our notes. Many of us had handwriting that resembled hieroglyphics except that no historian had been successful in providing a book to assist in their translation.
Whose record is it anyway? Few patients go through the formal processes we put in place for them to examine their own records. Times have changed. Patients want to know so much more about their health and the Internet has provided limitless opportunities to access information on any health care issue of interest. Physicians have come to realize how extensively our patients’ lifestyle choices determine our ability to influence their health outcomes. Our relationship with our patients must become one in which we, as their doctors, serve them. They must have ownership of their health information, understand their health care needs in health and disease and understand how to obtain optimal care for themselves and their families.
We viewed the EHR as a tool to bridge the information gap with our patients and made many decisions in the setup process to enhance this.
We specifically rejected the option of portable wireless touchpad computers as they have screens which are visible only to the provider, and are often held cradled in the provider’s arm, preserving the secrecy of the paper charts they replaced. Even though not all patients choose to look at the monitors, the availability they offer creates a bridge of trust and improves the provider-patient relationship.
We chose to redesign the encounter to put the review of prior information in the context of the current day’s encounter, and use this as an opportunity to involve the patient in his or her own care.
Providers enter the exam room unprepared by prior review of the patient’s record. Their review of the record and any activity since the previous encounter is done in collaboration with the patient. Looking at the computer screen together, the provider might say, “Let’s look over the note I wrote on the last visit to make sure we have followed up on all your issues.” Then, “Now let’s go over all the reports that have come in since your last visit ... two consult reports and your blood test results.” Rather than being insulted by this, patients are immediately drawn into reviewing their own records with their provider at their side, where a discussion of the results and necessary follow-up are facilitated. Copies are printed for the patient to keep at home with their medical records.
But there is a flaw in our system, a serious one which must be addressed and that flaw is that health care professionals do no speak English the way other people do. We write funny and speak about patients in an unnatural way.
“The patient did not comply with my diet instructions.”
“The patient appears in no acute distress.”
“ This is a 34 year old Hispanic woman who appears to be her stated age.”
When I started going over my previous notes with my patients I realized how ridiculous these notes were. People were genuinely confused. Most were too polite to comment but some turned away from the computer and simply blanked over as I read the medical history, exam findings and plans from the past visit. I started imagining what my patients were thinking as they translated my writings into common English.
“head – normocephalic” (Is that better than just plain ‘normal’)
“lungs clear to auscultation” (I don’t remember anyone named ‘auscultation’ listening to my lungs)
“reflexes 2+ bilaterally” (Is that 2 a good score – shouldn’t they be a 10?)
“thyroid not palpable” (Nobody ever told me I didn’t have a thyroid gland. I wonder if I need one?)
“Babinskis down” (I never even knew I had a Babinski. Shouldn’t they it be up?)
I was also amazed at how many times we qualify what the patient tells us like we are always suspicious that they are lying to us.
“The patient denies having sexual intercourse for the past 6 months”
Even referring to our patients as “the patient” itself is a ridiculous was of depersonalizing the medical encounter.
Printers in Every Exam Room Promote Patient Education and Involvement
Another example of the critical decisions that need to be made in the set-up of hardware is the location of printers. We decided to install printers in every examination room so that information could be produced for patients as part of the entire encounter process. This not only improved the patient flow in the center, but made the vast resources of the EHR instantly available to both the patient and the provider. It also insured the confidentiality of patient information, eliminating the possibility of a document being picked up off a central printer and inadvertently handed to the wrong patient.
At the start of the encounter, while reviewing lab results and returned consult reports, the provider can print copies for their patients on the spot. The workflow used by most providers next involves a review of the nurse’s notes and the vital signs taken when preparing the patient to see the provider. Vital signs, as well as all lab values, can be trended, graphed and printed for patients. The most common use of this function is the printing of progress charts of weight or blood pressure, graphing patients’ improvements (or lack thereof!)
It is well known that patients frequently do not take all the medications they were prescribed.[i] The EHR permits providers to review the list of current medications the patient should be taking, and print a summary for them as well. Prescriptions are printed in the exam room, as are requests for labs and specialty consultations. All of these documents become part of a package of health information that the patient can take with them and keep as part of their personal health records.
Patients Leave the Center with a Full Report of Their Encounter and Follow-up Recommendations
Studies of patients leaving their doctor’s office indicate that they rarely have a complete understanding of what was done and what they are supposed to do next.[ii] To combat this, the Institute designed an “After-visit Summary” that contains patient-friendly headings and a printout of all issues discussed in the day’s encounter. The summary includes patient identifying information, a list of their measured vital signs, the chief issues as told to the nurse, the provider note, a complete problem list, a summary of active medications, any new orders written for the patient, including consultations, imaging studies, lab tests, and immunizations or medications administered in the center. Providers who use this feature regularly in our practice report that their patients remind them to print the After-Visit Summary if they forget to do so at the end of an encounter.
Reading the Afer-visit summaries is another issue altogether. Aside from the obvious problems of providers using medical terms that patients do not, for the most part, understand there is the additional issue of abbreviations that are totally meaningless to those who have not studied medicine. Some would say we made great strides in developing list of “approved abbreviations” to avoid clinical error s and improve doctor to doctor and doctor to nurse communication but we have not even begun the journey of translating these abbreviations into English – another frontier altogether.
When I type PND into our computer I get “PND” on the screen. When I type “.PND” the computer spells out Paroxysmal Nocturnal Dyspnea. But that is programmable. What I want to do is tell the computer that “.PND” should be written as shortness of breath at night when lying down”. Better yet, if the patient’s primary language is Spanish and is so designated in the EHR, “.PND” should be translated to “falta los respiraciones por la noche cuando esta acuestado.” In that manner we will truly be improving communication with our patients – both in the exam room and when we share our written summaries with them to take home.
The mysteries of laboratory reporting have also puzzled my patients since giving them copies of their labs to take home or sending them in follow-up letters. Scientists have standardized many lab results in International units or mg/dl (milligrams per deciliter) measures. Imagine telling a patient though that a change from a creatinine (a kidney function test) from 1.5 to 1.8 is highly critical but a change in BUN (blood urea nitrogen – another kidney function test) from 20 to 28 is nothing to worry about. None of this makes any sense to people not educated in medicine or laboratory science. And all of this is fine until we start to try to draw patients into their own care and setting their own goals. Rather than telling folks that keeping all their values at 50 is the goal and that the safe range is from 40 to 60 for all values – we tell them to keep their HgbA1c (glycosylated hemoglobin – a test of diabetes control) below 7.0, their LDL (low density lipoprotein or “bad cholesterol”) below 130 (or 100 if they are diabetic), their HDL (high density lipoprotein or “good cholesterol” ) above 45, their hematocrit (red blood count) above 35, and so on. Not only don’t the values make sense but their normal ranges are not standardized between tests nor between different labs running the same test using different methods.
What does all this mean.
We need to transfer health information back to patients – a job that will require a major transformation of the way we use medical language and even the units of measurement we use.
It is essential that we do this. A patient making six ½ hour visits each year to my office spends 3 hours out of 8760 or .03% of their life that year in my office. The rest of the time they need access to their health information to keep them informed of what they need to do and to keep them motivated to stay focused on the health care issues that are important to their continued well-being.Health care providers have to relearn English and learn to translate their words and their measurements into terms that people can understand. Mary Sampson’s negative mammogram result was a positive finding for her but it could have been a lot more positive if she had known that negative was a good thing.
[i] Safran DG, Neuman, P, Schoen C, Prescription Drug Coverage and Seniors: Findings from a 2003 National Survey, Health Affairs Web Exclusive, 19 April 2005; W152-W166. Available at Health Affairs.org (accessed 6/8/05).
[ii] Lukoschek P, Fazzari M, Marantz P, “Patient and physician factors predict patients’ comprehension of health information, Patient Education Counseling, 50(2):201-210.