Open Notes – Do they Clarify or Muddy the Water?

Wai-O-Tapu Thermal Wonderland in New Zealand

Big changes are coming to patients ability to see their medical information.

Starting this month, federal rules will require that all laboratory tests, including pathology reports, imaging, and progress notes be immediately released to patients, with rare exceptions. In March of 2020 the Office of the National Coordinator for Health Information Technology published the “21st Century Cures Act” final rule that requires providers and others to not engage in, “information blocking” by interfering with the use of electronic health information. The idea of patients being able to readily see their charts is known as Open Notes.

Traditionally doctors (and nurse practitioners) notes were considered to be their property. They were paper charts, and if they sold their practice, the chart would go with it. Although they would send copies to other treating physicians, they wouldn’t necessarily give patients a copy if they requested, and they might charge copying costs.

Although ownership status legally varies by state, and is ambiguous and debated in a number of places, in practice nowadays, usually the actual chart, whether it’s paper or electronic, is considered to belong to the physician/practice, but the information belongs to the patient. That information is not always readily available to patients, particularly notes. In the case of test results, even when available through patient portals, there is often a delay. For better or worse, this will be mostly going away.

On the positive side, overlooked abnormal tests are more likely to be caught by patients, they will be able to see their results sooner, and they may better understand their condition and expectations by reading the notes about their visits.

On the negative side, there are all kinds of things that can go wrong. Let’s start with test results. At my institution we’ve had a delay set for tests, with different delays depending on the test. Over time we’ve shorted the time on many of them as we became comfortable with the process. For example, things such as blood counts and chemistry tests (kidney function, cholesterol, etc) would get released shortly after midnight. Other tests, such as pathology tests, have been delayed 14 days. That gives the person who ordered it a chance to contact the patient before they see the results online.

As a patient, would you prefer to find out that you have cancer by having your physician or nurse practitioner call you, or talk to you when you come in for an appointment, or to find out online without putting the information in context (“You’ve got mail!”)?

In some cases physicians can warn patients to get them prepared, such as informing them that although they think a breast lump is probably benign, it may turn out to be cancer, and tell them what will happen if that’s the case. But besides that they may not have time to always do this, some times the results are unexpected. For example, someone may have no symptoms but they get a routine chest x-ray to make sure it’s alright before they undergo certain surgical procedures. It could show signs indicating probable metastatic cancer, and the report that comes back to them electronically may be how they find out.

As a physician I worry about getting overwhelmed by patient requests for information regarding tests they’ve seen online. Already many ask about abnormalities that are not clinically significant, such as a low LDL cholesterol or a high HDL (both of which are generally good). I often say that abnormal doesn’t mean good or bad, just that it’s outside the normal range. I’ve had several patients starting taking calcium as a results of misinterpreting a report when they saw a low “LDL (calc)” not realizing that “calc” is just an abbreviation of calculated, and not calcium.

Patients being able to read progress notes causes even more anxiety. Even though patients already can request copies of their records, in most cases they don’t. If we do get a request we have a chance to contact them if we’re concerned about something they may read.

Besides the concern that questions will generate more work for me, I worry more about patients misinterpreting the notes. When someone comes in with various symptoms, physicians come up with a differential diagnosis, meaning the different things that might cause those symptoms. For example, if someone has a cough, it could be bronchitis, pneumonia, asthma, reactive airway disease due to reflux (heartburn), or lung cancer, among other possibilities. Those possibilities are often included in the note for several reasons. It helps the writer organize their thoughts, and reminds them what they were thinking if they (or someone else) later looks back at the note. It also provides protection against malpractice lawsuits. It’s less egregious to treat lung cancer with an antibiotic if you write that you think it’s unlikely that the patient has cancer and more likely it’s just bronchitis. Many things we may include on our differential are rare, but patients may worry if they read them.

Another concern I have about notes is information that patients may find embarrassing or otherwise uncomfortable. It may include information pertaining to domestic violence, drug use, or sexual function. Although the new law allows one to not release a particular note, it’s expected that it will be used minimally, and there are significant penalties for doing so unless you can justify that it would cause significant patient harm. I think this will lead people to modify how they write their notes, sometimes resulting in notes that are less useful for those writing them. Doctors and other providers can learn to write notes in ways that patients will better accept, but it will take practice, and won’t always be possible. Unfortunately it’s not clear if the law is retroactive, so even notes written 20 years ago may be available to be read, though currently my institution won’t do that, though the legal advice went back and forth on it (thanks, Congress, for making that perfectly clear!).

Many physicians and other medical providers who have already voluntarily gone to automatically sharing their notes have said that most people find out that despite their fears, in practice it has not been an issue. I hope that’s the case.

The Coronavirus Pandemic Came and Atlas Shrugged

No, I’m not talking about Ayn Rand’s novel, though there are parallels.

The United States is now heading into its third wave of SARS-CoV-2 coronavirus cases, which is the cause of COVID-19. With over 8 million cases diagnosed, increasing by over 56,000 per day, and over 220,000 deaths, our top scientists are being silenced and bad mouthed by President Trump and his administration.

So whose advice is President Trump listening to? That would be Dr. Scott Atlas, who has said that masks don’t work, and that quickly spreading the disease to develop herd immunity would be a good thing, shrugging off the idea that herd immunity that did not come from a vaccine would come at the cost of potentially millions of deaths.

At a town hall Savanah Guthrie pointed out that Dr. Atlas is not an infectious disease expert (or an epidemiologist for that matter) but Trump said, “Look, he’s an expert. He’s one of the great experts of the world.” He’s a neuroradiologist, so I’ll grant him expertise in MRI images of the neck, but he should not be influencing how we deal with this pandemic. I wouldn’t want Dr. Fauci or Dr. Birx to be responsible to interpret an MRI, and we shouldn’t want Dr. Atlas affecting how we manage this pandemic.

Leaving Against Medical Advice

When a patient leaves the hospital against the recommendation of their doctor, whether it’s to return home, or to go out for a smoke, it’s called leaving against medical advice, or AMA.

Yesterday President Trump left the hospital briefly so he could see his supporters on the streets near Walter Reed Hospital, where he has been hospitalized for COVID-19. In my book, he left AMA.

Not only did he needlessly put at risk the Secret Service agents who drove him around, but he put his own health at risk. If he is sick enough to get put on remdesivir, which is only approved by the FDA for emergency use, an experimental antibody cocktail that has only been approved for experimental use and was authorized on a compassionate basis, and the steroid dexamethasone, which was only found to be beneficial in those requiring mechanical ventilation or oxygen, then he is sick enough to remain in the hospital until he is ready to leave.

I attended the Uniformed Services University of the Health Sciences (USUHS) medical school, where part of my training was at Walter Reed National Military Medical Center. One of the things taught us was that contrary to what you might expect, generals often get worse care. The example given was a doctor skipping the prostate exam he would otherwise do so as not to embarrass the colonel, potentially missing a prostate cancer. Although nowadays the value of a routine prostate check is debatable, the lesson was correct. It applies more so to this president, who may be at risk of being overly treated, and those around him not insisting strongly enough that he follow doctor’s orders.

Covid Calculations – It’s Tough

Given the COVID-19 pandemic it’s difficult to know what one should do about so many things, including what activities are safe, what precautions one should take to avoid getting infected, what to do with investments, and whether one should send their kids to school.

As a physician I often give advice to my patients regarding coronavirus. Unfortunately the current administration has politicized the coronavirus pandemic and provided inaccurate and inconsistent messages. They denied it was a problem for a long time, and even now discourage a large number of people from wearing masks.

Besides giving out false information from the very top, they’ve had a corrupting influence on our institutions that deal with this pandemic, affecting our ability to deal with it.

For example, with very short notice hospitals were directed to stop sending hospitalization information to the CDC, and instead send it to the Department of Health and Human Services, only to later reverse course because the data was not being processed correctly.

The Centers of Disease Control (CDC) is world renowned has has trained scientists around the world. They now have to run pandemic related news through the White House and have made many changes and removed documents off their web site due to political considerations. Recently they changed their recommendation to stop testing asymptomatic patents, prompting two scientists, one of which had won a Nobel Prize and was director of the National Institute of Health, to say that we should ignore that advice.

A week after President Trump publicly pressured the FDA to approve a vaccine, the head of the FDA said he might approve a vaccine, in certain circumstances, before Phase 3 research was done. These are the experiments that show that something is safe and effective. The name of the federal government’s program to develop a vaccine, Operation Warp Speed, and the frequent predictions by government officials that we would have a vaccine this year, suggests that they may be willing to cut corners. We should proceed as fast as possible, but it should be based on solid scientific principals and consensus. Even if the decision is made to give up some safety and assurance of a vaccine working because of concerns about the economy, it should be a conscious decision and not pretending the science is something it’s not. We already have a big problem with people distrusting vaccines in general. If an approved vaccine has unexpected problems, it could keep people getting many vaccines for a long time.

President Trump has touted other treatments, including hydroxychloroquine, bleach, and plasma. The FDA just approved emergency use of plasma, despite not having good evidence yet. That will make it harder to recruit patients into research studies, where they might get a placebo, making it all the harder to find out if it’s really effective. Although some of things might have merit, these are things that should be done based on science, and a leader with no medical or scientific background has no business touting unproven treatments.

Recently Dr. Scott Atlas has the ear of the president. He has questioned the use of masks and suggested we encourage infections to get herd immunity. We’re not even sure yet if being infected confers long term immunity, but even if it does, assuming it takes 65% of the population to become infected, and 1% of those infected dies, that means we’d have over 2 million deaths in this country. Dr. Atlas is not an infectious disease specialist or epidemiologist. He is a radiologist who specializes in MRIs. But his qualification, from the White House perspective, is that he has appeared on Fox News multiple times, and it resonates with what they want to hear.

My patients trust usually trust my advice, but if I have to question what the FDA, CDC, and other government bodies tell us, it’s harder for me to give good advice.

Health Injustice

In spite of the COVID-19 pandemic, we’re now seeing large protests daily across the United States, and indeed in many places across the world, sparked by the unfortunate death of George Floyd by policeman in Minneapolis. The Black Lives Matter movement tries to address how blacks are unfairly treated, particularly by police.

This is a complex issue that dates back to when slavery was legal in the United States. I’ll leave the political and legal issues to others to discuss and will focus on health issues.

In the US the life expectancy for blacks is roughly 3 1/2 years less than for non-Hispanic whites as of 2014 according to the CDC. Why is that? It’s largely because they have more chronic medical problems, such as hypertension, diabetes, asthma, emphysema, obesity, and kidney disease. Why is that? Mostly because on average they are poorer, which leads to a worse diet, housing, working conditions, and access to health care. Why are they poorer? In part from racial injustice.

Even when blacks have access to good health care, they may be less likely to take their medications due to social norms, including distrust of the health care system.

With COVID-19 we’ve seen that black and some other minorities are at higher risk of getting infected, and are at greater risk of dying. So while participating in Black Lives Matters protests, they may be statistically at a higher risk of dying than from being killed due to racial injustice. Of course protests often carry risk, and for some it may be worth dying for. But do consider the risk of spreading it to others who may not want to die over it, and take reasonable precautions, particularly wearing a face mask, frequent hand washing, and maintaining social distancing as much as possible.

At the End of the Rainbow – UV and COVID-19

Recently I purchased a box on Amazon made by 59S to sterilize things using ultraviolet (UV) light. With the COVID-19 pandemic I have to think about masks that need to be reused, and my cellphone, keys, wallet, etc for the times I venture out. Sure I can wipe them down with disinfectant wipes, but those are in short supply, and can’t be used on everything.

This box puts out UV light in the 260-280 nm wavelength using LED lights, 15.6 watts, with a cycle of 3 minutes. The light is rated at 10,000 hours. That would be 200,000 treatments, though I’m not sure the zipper would last that long.

Given the almost $200 price, I was not only concerned about the possibility of having been ripped off, but was even more concerned that it might not work as advertised, and that things I thought had been sterilized might not actually be safe. Just because ultraviolet light is proven to be effective does not guarantee than any particular device works as advertised.

So I decided to purchase some Columbia Blood Agar, 5 Percent Sheep Blood plates to do a scientific experiment to test it. I used a method similar to this video, though I used a sleeve to cover the front, back, and sides of half of the petri dishes. Rather than a pure source of E coli, I just dipped a cotton swab in different sources (toilet bowl, dog water bowl, mouth). After a couple of days it clearly showed that the UV light worked with the bacteria only growing on the half that was shielded from the light, as shown below.

This box has 12 LED lights on the top and 12 on the bottom. So I knew it worked when exposed from above. The petri dish sits on little wire stand so it’s much closer to the bottom, so I had no concerns about adequate light on the bottom side, but what about the front, back, or sides of an object that might not be directly exposed to the lights? So I repeated the experiment, but propped up one dish perpendicular to the bottom and facing the front, and another facing the side.

Thanks to the reflective surface inside the box, it still worked, but not quite as well. As shown below, on a dish facing the front, the clear portion does not extend to the top (The scattered colonies in the clear part were not visible earlier. I’m uncertain if it represents a low level that was not killed, or maybe new grown from contamination from the air while examining the plate. I didn’t start with a pure bacteria nor have the means to distinguish the bacteria.) I had similar results on the side, and repeating this portion of the experiment.

I think the problem is that some items may fall into a shadow where they don’t get direct UV exposure, and they either don’t get indirect exposure from reflection, or if they do, they don’t get enough. Although just running a repeat cycle may fix the problem, a better solution would be to move the item to change the surfaces exposed to the front and bottom, and then repeat the cycle.

In practice, even if not perfect, it certainly decreases the risk of getting infected from the surface of an item treated. Most of the time the infection doesn’t take hold unless the number of bacteria or viruses exceeds the ability of the body to fight it off. Being mindful of where the lights are and how you’re putting things in the box may help.

I recommend the manufactures add lights to the front, back, and sides and perhaps change to a cylinder like a hat box.

Most cases of COVID-19 are probably transmitted from person to person via droplets, rather than from surfaces, but for those who can afford it, this device may lessen the risk of contracting it, or other infections, and provide peace of mind.

My Week in Words

Here’s a word cloud look at my last week, which was entirely telephone or virtual (video) visits given the COVID-19 pandemic. I took a compilation of all my notes, minus names and protected information of course. Many words did not fit, and I had to adjust the relative size of some words to include the most relevant ones.

More COVID-19 Coronavirus Thoughts

Photo of crown
Christian IV’s crown in Rosenborg Castle in Copenhagen, Denmark.

Social distancing is strange when it hits home. The last time we had kids and grandkids over for dinner, about a month ago, we tended to hold back giving the usual hugs. Three people were in the medical profession and two lived 5 miles away from the nursing home in Kirkland that had the big outbreak. It was like an Agatha Christie whodunnit murder mystery and we were all suspects!

At work we’ve been careful to conserve supplies for quite a while, particularly to help out for the places that really need them.

When wearing a gown I couldn’t swipe my badge to log in and out of the computer as my badge was under the gown (if over then it risked touching the patient if I was examining them). I had to pull the reader to me. Face ID doesn’t work with a mask. Last month I saw a new patient, who happened to have a cold, so we both wore masks. Neither of us really saw what the other looked like. More recently most everyone wears masks.

I often check a patient’s throat when doing a routine exam, but would skip it if not really needed to avoid having to be relatively close while they may be actively exhaling in front of me. When I do a physical exam on men, I’d think twice about telling them to turn their head and cough!

We’ve quickly changed how we practice medicine. We try to screen patients to prevent potentially sick patients from coming in. It doesn’t always work. They may have already had an appointment to follow up on their diabetes, and not mentioned that they had a cough. A phone screener may have asked if they went to South Korea or Italy or had known exposure, but that doesn’t mean they didn’t have exposure to someone sick that has yet to be diagnosed, and more recently travel history no longer matters. I documented any personal protective equipment (PPE) I used (mask, mask with eye shield, gloves, gown). That way if I later find out my patient was infected, I could look at what protection I wore. Because of equipment shortages I could not wear everything for every patient I see.

I purchased scrubs for the first time a few weeks ago. When I worked in the hospital many years ago, they provided them to us. Working in the clinic it was not considered acceptable attire for doctors. Because of the pandemic, administration authorized us to wear them. When I would get home, they would go straight to the washing machine, and I would head to the shower as a decontamination routine. We never made so much use of our LG Sidekick pedestal washer!

We’re heading towards doing telemedicine in a much bigger way. That protects our patients from being exposed coming in, and it protects health care workers, and other patients, from being exposed to sick patients. Various legal restrictions and how we are reimbursed has limited this, but now the government as temporarily removed many

restrictions and the government and private insurances are starting to pay for virtual healthcare. I was 17 minutes late the first time I did a case by phone. I was waiting for my nurse to check her in before I realized that I was supposed to call her! I also quickly realized that I needed to use my speaker phone as I could not type efficiently holding the phone with one hand. I’m now set up to do video visits from work or home, but it has been a challenge for many patients. The easiest way is to use a smart phone (iPhone or Android) and download the Epic MyChart app as we use Epic as our electronic medical record
(EMR). Then we can connect on our end using the Haiku app and have a secure video conference call. But some patients don’t have smart phones, and for those that do they often don’t understand that they need to download the app, and that there are a few steps they have to do on their end to actually connect. Some try to connect through MyChart on a browser, but that often doesn’t work. A couple of people couldn’t download the app because they didn’t remember their password for the app store. Another video app we’ve used, that is preferred by our legal department, is less intuitive and I’ve only been successful with it a few times. Occasionally we run into bandwidth issues and sound or video quality is not good. I’m not sure where the problem is, but I suspect it’s on the patient end as I’m connecting to a fast internet and Wi-Fi. When it works, though, it’s generally a good experience for patients and myself. Patients can show me a rash or swollen ankle. For both sides of a video conference, it’s helpful to have a good light source from the front. If it’s from the back one’s face is in the shadows. Try just using the rearview camera to get an idea of what you’ll look like (and what’s behind you!) beforehand. Although I think visits in person tend to be best, it’s certainly safer doing it virtually. Patients appreciate that, as well as the convenience.

People generally know that this pandemic has been hard on healthcare workers. What many people probably don’t realize is that in a healthcare organization a lot of others play important supporting rolls. As I serve on an informatics committee and am a Physician Builder, I’ve had a chance to see some of what’s going on. To place an order for a brand- new test, for example, some analyst had to build the functionality into our electronic medical record. There are many new workflows that were needed, including for telemedicine, and in the beginning the analysts were told we needed them yesterday.

Once a week I work with a family medicine resident to teach them geriatric medicine. I spoke with one last month that I wasn’t sure what was going to happen with her rotation since both I and my colleague were moving towards stopping seeing patients in the clinic. After she spoke with one of the faculty, they suggested she observe me doing telemedicine as I have a reputation for being good with computers. But how could I have her watch yet keep the recommended 6 feet of social distance? I did a test where I chatted with her over one of the apps and I was able to share the screen but then she went on vacation. I’m still trying to figure out a way that I can have a resident remotely do a video chat with the patient and myself. Not all the software we are using allows group video chats. Plus, I want it to be meaningful education for the residents.

I think this experience has brought increased camaraderie among doctors and others in healthcare, like serving together during war. Fortunately we have had less cases than expected in Washington so far, and we’ve not faced dire circumstances in my clinic.

Although it’s unpleasant to consider, on the plus side, this has finally got me to stop procrastinating and pushed me to get my estate plan and medical directive done.

First Thoughts on Coronavirus From a Primary Care Physician

Young girl wetting hands in fountain in Stockholm, Sweden.

The coronavirus infection COVID-19 has spread from Wuhan, China to my backyard in the Seattle area. I experienced firsthand the impact of this infection while on vacation in Hawaii over two weeks ago. The day after arriving in Honolulu, and just before traveling to Hawaii, a report came out that a Japanese tourist had been in Maui, then felt ill after arriving in Honolulu, then was diagnosed after returning to Japan. I started to see people wear masks, and friends who live there wanted to meet in a park for a picnic rather than go to a restaurant as a result.

To date 6 people in Washington State have died from COVID-19, which makes people, including healthcare workers, more nervous. We’ve already had several meetings to discuss how we will manage things. Things are still being worked out, and there are still a lot of unknowns.

As healthcare workers we are concerned about patients infecting us (and if we get sick, who will care for the patients?), or other patients. It’s a balance between asking patients not to come in if sick, and not wanting to miss other causes. It’s still flu season, and someone with a cough and fever is still more likely to have influenza then COVID-19. There are also other viruses, as well as bacterial infections that can cause pneumonia and need to be treated.

As the CDC says, the most important thing is hand washing. It’s important to not touch your face, which we tend to do often, myself included. I’ve started applying moisturizer lotion each morning as dry skin tends to itch more, which leads to touching the face more often.

I just saw a patient for hypertension and needed to start him on a medication. There are lots of choices, but for various reasons I usually start with an ACE inhibitor, such as lisinopril. That’s what I ended up prescribing, but I had second thoughts as the most common side effect is cough and I worried that people might think he had coronavirus if he developed a cough. I consider an angiotensin renin blocker, such as losartan or valsartan, but there have been frequent shortages of that class lately due to chemical contamination issues leading to recalls.

There will be lots of other things to consider as things progress. In the meantime, don’t panic, but wash your hands often. Don’t wear a mask if you’re not sick or around someone who is (it probably doesn’t help, and we need to make sure we don’t run out for those who really need it), and don’t touch your face!

TV Ad with Unintended Medical Humor

Screenshot of Infiniti QX50 rear liftgate from commercial

Recently on TV I’ve seen an Infiniti Winter Sales Event TV Commercial. About 6 seconds in the rear liftgate comes down and one can see the license plate, BPH 738. There’s no indication of what state issued it, but primary care and urology doctors would immediately recognize the first three letters as an abbreviation for benign prostatic hypertrophy (an enlarged prostate). Maybe they chose that on purpose to suggest speed, because when you gotta go, you gotta go!