Month: January 2025

The prompt matters when using Large Language Models (LLMs) and AI in healthcare

by Dana Lewis

I see more and more research papers coming out these days about different uses of large language models (LLMs, a type of AI) in healthcare. There are papers evaluating it for supporting clinicians in decision-making, aiding in note-taking and improving clinical documentation, and enhancing patient education. But I see a wide-sweeping trend in the titles and conclusions of these papers, exacerbated by media headlines, making sweeping claims about the performance of one model versus another. I challenge everyone to pause and consider a critical fact that is less obvious: the prompt matters just as much as the model.

As an example of this, I will link to a recent pre-print of a research article I worked on with Liz Salmi (pre-print here).

Liz nerd-sniped me about an idea of a study to have a patient and a neuro-oncologist evaluate LLM responses related to patient-generated queries about a chart note (or visit note or open note or clinical note, however you want to call it). I say nerd-sniped because I got very interested in designing the methods of the study, including making sure we used the APIs to model these ‘chat’ sessions so that the prompts were not influenced by custom instructions, ‘memory’ features within the account or chat sessions, etc. I also wanted to test something I’ve observed anecdotally from personal LLM use across other topics, which is that with 2024-era models the prompt matters a lot for what type of output you get. So that’s the study we designed, and wrote with Jennifer Clarke, Zhiyong Dong, Rudy Fischmann, Emily McIntosh, Chethan Sarabu, and Catherine (Cait) DesRoches, and I encourage you to check out the pre-print and enjoy the methods section, which is critical for understanding the point I’m trying to make here. 

In this study, the data showed that when LLM outputs were evaluated for a healthcare task, the results varied significantly depending not just on the model but also on how the task was presented (the prompt). Specifically, persona-based prompts—designed to reflect the perspectives of different end users like clinicians and patients—yielded better results, as independently graded by both an oncologist and a patient.

The Myth of the “Best Model for the Job”

Many research papers conclude with simplified takeaways: Model A is better than Model B for healthcare tasks. While performance benchmarking is important, this approach often oversimplifies reality. Healthcare tasks are rarely monolithic. There’s a difference between summarizing patient education materials, drafting clinical notes, or assisting with complex differential diagnosis tasks.

But even within a single task, the way you frame the prompt makes a profound difference.

Consider these three prompts for the same task:

  • “Explain the treatment options for early-stage breast cancer.”
  • “You’re an oncologist. Explain the treatment options for early-stage breast cancer.”
  • “You’re an oncologist. Explain the treatment options for early-stage breast cancer as you would to a newly diagnosed patient with no medical background.”

The second and third prompt likely result in a more accessible and tailored response. If a study only tests general prompts (e.g. prompt one), it may fail to capture how much more effective an LLM can be with task-specific guidance.

Why Prompting Matters in Healthcare Tasks

Prompting shapes how the model interprets the task and generates its output. Here’s why it matters:

  • Precision and Clarity: A vague prompt may yield vague results. A precise prompt clarifies the goal and the speaker (e.g. in prompt 2), and also often the audience (e.g. in prompt 3).
  • Task Alignment: Complex medical topics often require different approaches depending on the user—whether it’s a clinician, a patient, or a researcher.
  • Bias and Quality Control: Poorly constructed prompts can inadvertently introduce biases

Selecting a Model for a Task? Test Multiple Prompts

When evaluating LLMs for healthcare tasks—or applying insights from a research paper—consider these principles:

  1. Prompt Variation Matters: If an LLM fails on a task, it may not be the model’s fault. Try adjusting your prompts before concluding the model is ineffective, and avoid broad sweeping claims about a field or topic that aren’t supported by the test you are running.
  2. Multiple Dimensions of Performance: Look beyond binary “good” vs. “bad” evaluations. Consider dimensions like readability, clinical accuracy, and alignment with user needs, as an example when thinking about performance in healthcare. In our paper, we saw some cases where a patient and provider overlapped in ratings, and other places where the ratings were different.
  3. Reproducibility and Transparency: If a study doesn’t disclose how prompts were designed or varied, its conclusions may lack context. Reproducibility in AI studies depends not just on the model, but on the interaction between the task, model, and prompt design. You should be looking for these kinds of details when reading or peer reviewing papers. Take results and conclusions with a grain of salt if these methods are not detailed in the paper.
  4. Involve Stakeholders in Evaluation: As shown in the preprint mentioned earlier, involving both clinical experts and patients in evaluating LLM outputs adds critical perspectives often missing in standard evaluations, especially as we evolve to focus research on supporting patient needs and not simply focusing on clinician and healthcare system usage of AI.

What This Means for Healthcare Providers, Researchers, and Patients

  • For healthcare providers, understand that the way you frame a question can improve the usefulness of AI tools in practice. A carefully constructed prompt, adding a persona or requesting information for a specific audience, can change the output.
  • For researchers, especially those developing or evaluating AI models, it’s essential to test prompts across different task types and end-user needs. Transparent reporting on prompt strategies strengthens the reliability of your findings.
  • For patients, recognizing that AI-generated health information is shaped by both the model and the prompt. This can support critical thinking when interpreting AI-driven health advice. Remember that LLMs can be biased, but so too can be humans in healthcare. The same approach for assessing bias and evaluating experiences in healthcare should be used for LLM output as well as human output. Everyone (humans) and everything (LLMs) are capable of bias or errors in healthcare.

Prompts matter, so consider model type as well as the prompt as a factor in assessing LLMs in healthcare. Blog by Dana M. LewisTLDR: Instead of asking “Which model is best?”, a better question might be:

“How do we design and evaluate prompts that lead to the most reliable, useful results for this specific task and audience?”

I’ve observed, and this study adds evidence, that prompt interaction with the model matters.

A Tale of Three Artificial Intelligence (AI) Experiences in Healthcare Interactions

by Dana Lewis

AI tools are being increasingly used in healthcare, particularly for tasks like clinical notetaking during virtual visits. As a patient, I’ve had three recent experiences with AI-powered notetaking tools during appointments with the same clinician. Each time, I consented to its use, but the results were very different across the three encounters. The first two involved similar tools with mostly good results but surprising issues around pronouns and transparency of the consent process. The third was a different tool with a noticeable drop in quality. But what really stands out, when I compare these to a visit without AI, is that human errors happen too — and the healthcare system lacks effective processes for identifying and correcting errors, no matter the source.

Encounter One: Good Notes, Incorrect Pronouns

At the start of my first virtual appointment, my clinician asked for my permission to use an AI-powered tool for notetaking. I consented. After the visit, I reviewed the clinical note, and the summary at the top described me using “he/him” pronouns. I’m female, so they should have been “she/her”.

The rest of the note was detailed and clinically accurate and useful. But the pronoun error stood out. It seemed like the AI defaulted to male pronouns when gender information wasn’t explicitly mentioned, which made me wonder whether the model was trained with gender bias or if this was a design flaw in this tool.

Encounter Two: Clarifying Pronouns, Learning About Chart Access

At the next appointment, my clinician again asked for consent to use an AI-powered notetaker. I agreed and pointed out the pronoun error from the previous visit, clarifying that I am female and use she/her pronouns. My clinician looked at the prior note and was equally puzzled, commenting that this issue had come up with other patients — both directions, sometimes assigning female pronouns to male patients and vice versa. The clinician mentioned that the AI system supposedly had access to patient charts and should be able to pull gender information from existing records. That really surprised me: the consent statement had described the tool as a notetaking aid, but nothing had been said about access to my full chart. I would have given permission either way, but the fact that this hadn’t been disclosed upfront was disappointing. I had understood this to be a passive notetaking tool summarizing the visit in real time, not something actively pulling and using other parts of my health record.

This time, the pronouns in the note were correct (which could be because we talked about it and I declared the pronouns), and the overall summary was again accurate and detailed. But the fact that this was a recurring issue, with my provider seeing it in both directions across multiple patients, made it clear that pronoun errors weren’t a one-off glitch.

Encounter Three: A Different AI with Worse Results

By the third appointment, I knew what to expect. The clinician again asked for consent to use an AI notetaker, and I agreed. But after reviewing the note from this visit, two things stood out.

First, the quality of the notetaking was noticeably worse. Several errors were obvious, including situations where the note reflected the exact opposite of what had been discussed. For example, I had said that something did not happen, yet the note recorded that it did.

Second, this time the note disclosed the specific software used for notetaking at the bottom of the document. It was a different tool than the one used in the first two visits. I hadn’t been told that a different AI tool was being used, but based on the change in quality and the naming disclosure, it was clear this was a switch.

This experience reinforced that even when performing the same task — in this case, AI notetaking — the software can vary widely in accuracy and quality. I much preferred the output from the first two visits, even with the initial pronoun error, over the third experience where clinically significant details were recorded incorrectly.

Notably, there doesn’t seem to be a process or method (or if there is one, it is not communicated to patients or easily findable when searching) to give the health system feedback on the quality and accuracy of these tools. Which seems like a major flaw in most health systems’ implementations of AI-related tools, assessing and evaluating only from the healthcare provider perspective and overlooking or outright ignoring the direct impact on patients (which influences patient care, the clinician-patient relationship, trust with the health system….).

A Human-Only Encounter: Still Not Error-Free

To give further context, I want to compare these AI experiences with a separate virtual visit where no AI was involved. This was with a different clinician who took notes manually. The pronouns were correct in this note, but there were still factual inaccuracies.

A small but clear example: I mentioned using Device A, but the note stated I was using Device B. This was not a critical error at the time, but it was still incorrect.

The point here is that human documentation errors are not rare. They happen frequently, even without AI involved. Yet the narrative around AI in healthcare often frames mistakes as uniquely concerning when, in reality, this problem already exists across healthcare.

A Bigger Issue is Lack of Processes for Fixing Errors

Across all four encounters — both AI-assisted and human-driven — the most concerning pattern was not the errors themselves but the failure to correct them, even after they were pointed out.

In the first AI note where the pronouns were wrong, the note was never corrected, even after I brought it up at the next appointment. The error remains in my chart.

In the human-driven note, where the wrong device was recorded, I pointed out the error multiple times over the years. Despite that, the error persisted in my chart across multiple visits.

Eventually, it did affect my care. During a prescription renewal, the provider questioned whether I was using the device at all because they referenced the erroneous notes rather than the prescription history. I had to go back, cite old messages where I had originally pointed out the error, and clarify that the device listed in the notes was wrong.

I had stopped trying to correct this error after multiple failed attempts because it hadn’t impacted my care at the time. But years later, it suddenly mattered — and the persistence of that error caused confusion and required extra time, adding friction into what should have been a seamless prescription renewal process.

My point: the lack of effective remediation processes is not unique to either AI or human documentation. Errors get introduced and then they stay. There are no good systems for correcting clinical notes, whether written by a human or AI.

So, What Do We Do About AI in Healthcare?

Critics of AI in healthcare often argue that its potential for errors is a reason to avoid the technology altogether. But as these experiences show, human-driven documentation isn’t error-free either.

The problem isn’t AI.

It’s that healthcare systems as a whole have poor processes for identifying and correcting errors once they occur.

When we evaluate AI tools, we need to ask:

  • What types of errors are we willing to tolerate?
  • How do we ensure transparency about how the tools work and what data they access?
  • Most importantly, what mechanisms exist to correct errors after they’re identified?

This conversation needs to go beyond whether errors happen and instead focus on how we respond when they do.  It’s worth thinking about this in the same way I’ve written about errors of commission and omission in diabetes care with automated insulin delivery (AID) systems (DOI: 10.1111/dme.14687; author copy here). Errors of commission happen when something incorrect is recorded. Errors of omission occur when important details are left out. Both types of errors can affect care, and both need to be considered when evaluating the use of AI or human documentation.

In my case, despite the pronoun error in the first AI note, the notetaking quality was generally higher than the third encounter with a different AI tool. And even in the human-only note, factual errors persisted over years with no correction.

Three encounters with AI in healthcare - reflecting on errors of omission and commission that happen both with humans and AI , a blog post by Dana M. Lewis from DIYPS.orgAI can be useful for reducing clinician workload and improving documentation efficiency. But like any tool, its impact depends on how it’s implemented, how transparent the process is, and whether there are safeguards to address errors when they occur.

The reality is both AI and human clinicians make mistakes.

What matters, and what we should work on addressing, is how to fix errors in healthcare documentation and records when they occur.

Right now, this is a weakness of the healthcare system, and not unique to AI.

Infection is not inevitable: how to stop the spread of infections like COVID-19, flu, RSV, colds, and more in your house

by Dana Lewis

I observe a number of people who seem to think it’s inevitable that once someone gets sick, the rest of the house is going to get sick with 100% certainty.

Nope.

First of all, household transmission rates are less than 100% for all of these conditions, even if you didn’t take any precautions or make any behavior changes.

Secondly, with knowledge about how these things spread and some mitigation measures, you can reduce this a lot – and in some cases to nearly zero.

I will caveat: that of course depending on the situation some of these precautions may not make sense or be possible. For example, if you have kids, your exposures may be different. We don’t have kids in our house, so we are dealing with adult to adult possible transmission. That being said, some of these things may still be worth doing to some degree, to cut down the risk of exposure and/or to limit the viral dose you are exposed to, even in a situation that is less straightforward like a parent taking care of sick kids.

PS – if you’re reading this in January 2025 and don’t read the rest, make sure you’ve gotten your flu shot (yes, it helps) for the 2024-2025 flu season. No, it’s not too late. If you’re >65, you should also check about the RSV vaccine (which like the flu shot is a seasonal vaccine). It’s not too late and given the current high rates of RSV and flu (and soon to be uptick in COVID), they can help prevent getting or limit the severity if you do get exposed.

Our experience preventing the spread of RSV and the common cold

I can speak with recent, practical experience on this.

Twice.

First, let’s talk about RSV.

Before Thanksgiving, Scott and I were exposed to a nibling (aka a niece or nephew – of which we have 10 plus several honorary ones!) who had what we thought was a lingering cough from a cold from a few weeks ago. Because I am avoiding infection, I wore a mask inside and did not get up close to the nibling, so as a result of all of this likely had minimal exposure. Scott did not mask and had spent a lot more time with this nibling hanging all over him and coughing near or on him. Within 48 hours, he started to get symptoms of something.

We activated our plan for household transmission avoidance. Well, with a rolling start: Scott recognized by Thanksgiving evening that he was starting to feel unwell and had a tiny bit of coughing. I thought I could hear something in his chest differently, in addition to the occasional cough, so I went into full precaution mode while Scott did a partial precaution mode. This meant we set up air purifiers by each of our beds, and a fan pointed in my direction so all air was blowing away from me. I also wore a mask to go to sleep in. (This was super annoying and I don’t like doing this, especially because I usually take a shower and go to bed with wet hair. Wearing an n95 with head straps on wet hair plus having a fan and purifier blowing on me is chilly and unfun.) I would’ve preferred Scott to mask, too, or go to the guest bedroom to sleep, but it was late in the evening; he wasn’t convinced he was really sick; and I was too exhausted to argue about it on top of the fact that we were leaving on a trip the next morning. So he did not mask that night.

The next morning, though, he was definitely sick. He tested negative for COVID, and the nibling and everyone else from that house had been testing for COVID and negative, so we were fairly confident based on serial testing that this was not COVID. At the time, the thought was this was a common cold.

Since we were planning to mask in indoor spaces, anyway, including in the airport and on the plane, we felt comfortable going on our trip as planned, because we would be unlikely to infect anyone else. (This includes no indoor dining: we don’t take off our masks and eat inside.)

Because Scott realized he was sick, he masked from that point forward (with a non-valved N95). We both masked in the car, in the airport, on the plane, and again when we arrived while driving in the rental car. Then a challenge: we needed to eat dinner (we got takeout), and we were sharing a hotel room overnight. We switched from a hotel room with a king bed to a room with two queen beds, which would give us some more space overnight. But we took turns eating dinner unmasked in the hotel room (it was too cold to be outside) with the far-UVC lights on and the purifiers around each of us when we ate. While we ate, the other person was masked. (And I went first, so there was no unmasked air from Scott while I was eating and he went second). We also took turns showering, again with me going first and him not having been in the bathroom unmasked until after I had gone in. Other than that, we stayed masked in the hotel room including overnight, again with purifiers between us and the far-UVC lights running.

(This hotel did not have windows that opened to outside, but if there had been windows I would’ve eaten in front of the open window and we would’ve likely kept it cracked open and the heat turned up, to improve the room’s ventilation).

The next day, we had more of a drive, and again we masked. We also slightly rolled down the windows in the backseat to improve ventilation. Scott sometimes took his mask off for comfort stretches, because he was driving, but put it back on fully and sealed it before coughing. I kept my mask on without ceasing. We did a 4.5 hour drive this way.

Luckily, once we arrived at our destination, there was a spare bedroom, so that became Scott’s headquarters. He stayed masked in the living room/shared areas. He sat downwind outside and masked up when coughing if anyone was outside. We left the sliding door to the outside cracked open, in order to keep the air in the common areas well-ventilated. This worked, because we were able to keep CO2 levels (a proxy for ventilation) down below 700 ppm most of the time.

Because we had separate bedrooms, we did not mask while sleeping the rest of the week, because we each had our own rooms (and own airflow). I did keep a purifier running in my room all week, but that’s my habit regardless because I’m so allergic to dust.

And guess what? It all worked. We masked again on the drive back to the airport and in the airport and on the plane and again once we got home.

I never got RSV. The four other adults we spent time with and shared a house with….also did not get RSV. So we are pretty confident that the transmission chain stopped completely at Scott.

In summary, what worked:

  • Masking in shared spaces, and two-way masking when it wasn’t possible to ventilate
  • When we had to sleep in the same room, two-way masking even for sleeping overnight
  • Scott masking in shared spaces that were well ventilated, and often left the room to go cough even when masked (or coughing outside). This often meant he masked, but the rest of us did not mask inside the whole time.
  • Generally keeping distance. Droplets were managed by the N95 mask, and we were ventilating to reduce aerosol transmission risk, but still keeping physical distance to further reduce the risk.

RSV is *very* transmissible especially with aerosols, and Scott was coughing a lot all day and night. (At one point, his Sleep Cycle app was estimating 18 coughs per hour). It took a long time for that to get down to normal, so he continued to sleep in our guest room when we got back and we continued to ventilate well even when we gradually reduced masking once he stopped coughing. It took about 10 or so days for all of his biometrics to normalize, and about 14 days for his cough to completely go away. It probably was closer to three weeks before he finally felt all recovered.

So with that timing in mind, you know what happens 4 weeks after Thanksgiving? Christmas/other end of year holiday gatherings.

We had plans to see 8 kids and 8 adults (plus us) for Christmas. And at Christmas, it seemed like everyone had a cold already. So again, I went in and mostly masked except for when I was in front of an open window and the room was well ventilated, without anyone coughing actively in the room. (If anyone was in the room with me and coughing, especially the kids, I would mask even with the window open).

I did not get the cold that 8-10 (out of 16) people eventually got.

But…Scott did. And this time, he was mostly masked, but he still spent more time up close with kids who were coughing quite a bit. And this is where some of the dynamics of knowing WHAT people have is helpful. You can’t always know, but you can sometimes use the symptoms to figure out what people have.

For example, based on symptoms of the nibling who passed on germs to Scott around Thanksgiving, and Scott’s symptoms (instant, incredible chest cough but no runny nose, sore throat, fever, or aches) we had ultimately guessed that Scott had RSV. We then knew that the biggest risk was either droplets from coughing (especially because the volume of coughing), which could be reduced drastically by masking, or aerosols, which again would be helped by his masking and also ventilation, and in closed spaces, two-way masking (me masking).

For the Christmas germs, everyone seemed to have mild symptoms with congestion, runny noses, some coughs. But no fevers or aches and it seemed less severe. Given our recent experience with RSV, we narrowed it down to likely being a cold (rhinovirus), given again everyone testing repeatedly negative for COVID.

Given that, we knew the risk was going to be highest for us from droplets and fomites. So we again masked in shared spaces; Scott went to sleep in the guest bedroom as soon as he started getting symptoms; and we both did a lot of hand washing. Scott washed his hands before touching any of my things and regularly wiped down the kitchen. I tried not to go in the kitchen much (our main overlapping shared space), but also wash my hands after any time that I did. He didn’t have much of a cough and it was more controlled, so he would hold his cough until he could cover it with a mask or be in the room by himself. We also did our usual running of purifiers and opened windows and ran fans to increase ventilation to keep CO2 low.

And again? It worked. I did not get the cold, either from any of the ~8+ folks who did across the holiday period, or from Scott. Scott’s vitals all returned to normal at the five day mark, although we continued to mask in the car through day 7, to be more cautious (due to my personal situation).

So, infection is not inevitable, even in small houses and apartments.

Here’s what we’ve taken away from these experiences with more aerosol-based (RSV) transmission diseases and more droplet and fomite-based (cold) experiences:

  1. Two-way N95 masking works. Mask in the car, run the fan, keep the windows cracked, run purifiers at home, and ventilate spaces, but you still want two-way masking when something is aerosolized and you’re in the same spaces. This can prevent transmission.
  2. Keep distance when someone is coughing and sneezing (and if they have a cough or sneeze type illness, you want 6 foot distance even when they’re not actively coughing or sneezing, because they make droplets just from breathing and talking). The person who’s coughing and sneezing should mask, even inside, unless they are in their own room in private (and it’s not a shared room).Keep your air ventilated (if you haven’t, read my post about ventilation and using a Co2 monitor)Depending on the illness, to fully protect yourself you’ll need to commit to wearing a mask at all times indoors to protect yourself if the person who is sick is not masking. (Eg, Scott got a cold while mostly masked around heavily coughing niblings, but not throughout the whole house the whole day). With adults, the adults who are sick should definitely mask if they’re in shared spaces with other adults. (It’s harder with kids, and it should be a conversation depending on the age of the kids about them masking in shared spaces, such as if they want to play with Uncle Scott, or help them understand that someone may not want to play up close if they’re sick and coughing and not willing to mask. That’s fine, but that’s a choice they can make when kids are old enough to understand.)
  3. Have the infected person sleep in a different space (on the couch or in another room if you have a spare bedroom). If you have to share a room, both should mask.
  4. Use cleaning wipes to wipe down shared surfaces (e.g. fridge handles, microwave, counters, bathroom surfaces like the flush on the toilet or sink faucet, etc) and wash your hands after using these shared spaces every time. Fomites can last longer than you’d expect.
  5. Use metrics from your wearable devices (eg Apple Watch or Oura ring or similar) to track when your temperature, respiratory rate, heart rate, cough rate, etc. return to normal. That tied with symptom elimination can help you determine how long you’re likely most infectious for. The general estimates of contagiousness for each condition generally seem to be right (e.g., two weeks for an adult with RSV and 5-7 days for a cold) in our recent experiences. I would continue precautions for at least those minimum time frames, if you can.
  6. Yes, there’s a cost to these precautions, in terms of human contact. There was no hugging or hand holding or kissing or any touch contact during these time periods. I felt pretty lonely, especially because it was me we were trying to protect (because I am at high risk for bad outcomes due to immunosuppression right now), and I’m sure Scott also felt lonely and isolated. That part sucked, but we at least knew it was a fixed period of time, which helped.

What we’d do differently next time

Infection is not inevitable -how to reduce transmission of illness in your household (including COVID-19, RSV, flu, and the common cold), written by Dana M. Lewis from DIYPS.orgThis basically has been our plan for if either of us were to get COVID-19 (or the flu), and it’s good to know this plan works for a variety of conditions including RSV and the common cold. The main thing we would do differently in the future is that Scott should have masked the very first night he had symptoms of RSV, and he has decided that he’ll be masking any time he’s in the same room as someone who’s been coughing, as that’s considerably less annoying than being sick. (He really did not like the experience of having RSV.) I obviously did not get it from that first night when he first had the most minor symptoms of RSV, but that was probably the period of highest risk of transmission of either week, given the subsequent precautions we took after that.

Combined, everything we did worked, and we’ll do it again when we need to in the future, which should not be very often. We went five full years without either of us getting any type of infection (yay), and hopefully that continues from here on out. We’ll also continue to get regular COVID-19 boosters; annual flu shots; and other annual shots if/when they become available (e.g. when we reach the age, getting the RSV vaccine).

—

Remember, if you’re reading this in January 2025, RSV and flu levels are very high in the US right now, with COVID-19 expected to pick up again soon. It’s not too late to get your boosters and given the rates of respiratory illness, consider situational masking even if you don’t typically mask.

You are a sail and not an anchor

by Dana Lewis

When you’re dealing with a challenging health situation, it can be hard. Hard because of what you are dealing with, and hard because you need to navigate getting and seeking care. That typically looks like going to a doctor, getting the doctor to understand the problem, and then finding solutions to deal with the problem.

Each of those has their own challenges. You may not have a doctor that specializes in the area you need. For example, you may not have a primary care doctor when you have strep throat, and have to go to urgent care instead. Or maybe you develop a problem with your lungs and need a pulmonologist, but that requires a referral from someone and several months’ wait to be seen.

Once you face that challenge and are in fact seen by the specializing provider (and hopefully the problem you have is in fact the one this specialist can address, rather than referring you on to a different kind of specialist), you have to figure out how to communicate and show what issues you have to the doctor. In some cases, it’s really obvious. You have a red, angry throat which leads to the doctor ordering a strep test. Or you go to the dermatologist for a skin check because you have a mole that is changing, and you get a skin check and a biopsy of the mole. Problem identified and confirmed.

It takes identifying and confirming the problem, and usually diagnosing it, to then reach the stage of addressing it, either with symptom management or with curing or fixing or eliminating the source.

But…what happens when you and your doctor can’t define the problem: there is no diagnosis?

That’s a challenging place to be. Not only because you have a problem and are suffering with it, but also, the path forward is uncertain. No diagnosis often means no treatment plan, or the treatment plan itself is uncertain or delayed.

No diagnosis means that even if your provider prescribes a treatment option, it may get denied by the insurance company because you don’t have the clinical diagnosis for which the treatment is approved for. Maybe your doctor is able to successfully appeal and get approval for off-label use, or maybe not.

And then, there’s no certainty that the treatment will work.

So. Much. Uncertainty. It’s hard.

It’s also made hard by the fact that it’s hard to tell people what’s going on. A broken leg, or strep throat, or a suspicious mole: these are things that are relatively easy to explain to other people what is going on, what it means, how it might be treated, and what a rough expectation of timeline for resolution is.

Most stories are like this. There’s a story arc, a narrative that has a beginning, middle, and an end.

With the uncertain health situations I’m describing, it’s often never clear if you’ve even reached “the middle”, or what the end will be…or if there even is an end. Certainly no guarantee of a happy ending, or an ending at all if you have been diagnosed with a chronic, lifelong disease.

I’ve been there (here) many times, now living with more than a handful of autoimmune diseases that I’ll have for life. But the first few were relatively “simple” to diagnose, treat, and understand what they looked like. For example, with type 1 diabetes, the symptoms of weight loss, excessive urination, incredible thirst, etc. led to a blood test confirming high glucose, an A1c test confirming it had been high for months, and a diagnosis of type 1 diabetes. The treatment is managing glucose levels with insulin therapy, presumably for the rest of my life. (22 years and counting, here). It makes things challenging, but it’s something I can explain to other people for the most part what it means and how it does or does not impact my life.

Lately, though, I’ve found more uncertainty. And that makes it hard, because if there is no diagnosis then there is no clear explanation. No certainty, for myself or to give my loved ones. Which makes it feel isolating and hard psychologically, in addition to the physical ramifications of the symptoms themselves.

There’s a saying in medicine: “When you hear hoofbeats, think horses, not zebras.” It’s a reminder for clinicians to consider common explanations first, rather than go straight to explanations of rare conditions. Most of the time, the advice is helpful—common issues should be ruled out before rarer ones.

In my case, that’s what we did. We ruled out every possible common condition…and then pretty much all the rare ones. So what do you do, when your symptoms don’t match the pattern of a horse…or a zebra?

You might have an uncommon presentation of a common disease or a common presentation of a rare disease.

Either way, whether horse or zebra, the symptoms cast a shadow. They’re real.

Whether the animal in question has stripes or not, you’re still living with the impact. What makes this even harder is that many diagnostic processes rely on pattern recognition, yet undiagnosed conditions often defy easy patterns. If your symptoms overlap with multiple conditions—or present in a way that isn’t fully typical—then the search for answers can feel like trying to describe a shadow, not the thing itself.

And shadows are difficult to explain.

This makes a meta-challenge on top of the challenge of the situation, which is trying to explain the unexplainable. This is crucial not just for helping your doctors understand what is going on, so we can improve the diagnostic pursuit of answers or gauge the efficacy of hand-wavy treatment plans meant to do something, anything, to help… and it’s also crucial for explaining to your friends and family what is going on, and what they can do to help.

We often want to see or hear health stories in the format of:

  • Here’s the problem.
  • Here’s what I’m doing about it.
  • Here’s how I’m coping or improving.
  • Bonus: here’s how you can help

I’ve seen so many examples of friends and family responding to the call for help, for me and for others in health situations. I know the power of this, which is why when you can’t explain what’s going on, it makes it challenging to ask for help. Because it’s hard to explain the “what” and the “why”: you are only left with the “so what” of ‘here’s what the end result is and how I need help’.

(And if you’re like me, a further challenge is the situation being dynamic and constantly changing and progressing, so what help you might need is a constant evolution.)

You might also feel like you shouldn’t ask for help, because you can’t explain the what and the why. Or because it is ongoing and not clear, you may want to ‘reserve’ asking for help for later ‘when you really need it’, even if you truly do need help then and there at that point in time. As weeks, months, or even years drag on, it can be challenging to feel like you are burdening your loved ones and friends.

But you’re not.

The best meta explanation and response to my attempts to communicate the challenges of the meta-challenge of the unexplainable, the uncertainty, the unending saga of figuring out what was going on and how to solve it, came from Scott (my husband). We’ve been married for 10 years (in August), and he met me when I had two of my now many autoimmune diseases. He knew a bit of what he was getting in to, because our relationship evolved and progressed alongside our joint interests in problem solving and making the world better, first for me and then for anyone who wanted open source automated insulin delivery systems (aka, we built OpenAPS together and have spent over a decade together working on similar projects).

That being said, to me it has felt drastically different to be living with ‘understandable’ chronic autoimmune diseases like type 1 diabetes and celiac, and this latest saga where it’s unclear if it’s an extension of a known autoimmune disease (presenting and progressing atypically) or if it’s a new, rare autoimmune or other type of disease. So much is unknown. So many challenges. When we would adapt and address one problem or challenge, it evolved and needed another solution, or another problem cropped up. I’m honestly at this point exhausted of adaptations and problem solving. I’m tired of asking, seemingly endlessly, for help and support. Amazingly, Scott does not seem exhausted by it or tired of me, whereas many people would be. And he said something a few weeks ago, completely off the cuff and unplanned that really resonated with me. I was talking, again (he’d heard this many times), about how hard this all has been and is, and that I was also aware of the effect it has on him and on our relationship. I can’t do all the things I did before, or in the way I did before, so it’s changed some of what we do, where we go, and how we are living our lives. I’m having a hard time with that, and it would be natural for him to have similar feelings. (And frustrations, because if I feel frustrated with being out of control and unable to change the situation and fix it, so too would he be except worse secondhand because it’s so hard to love someone and not be able to help them!)

But what he said literally stopped me in my tracks after he said it, because we were out walking and I had to physically stop after he said it to process it in my heart (and leak some tears from my eyes).

It was something along the lines of:

“You’re not an anchor, you’re a sail.”

Meaning, to him, I’m not holding him back from living his life (as I was and am concerned about).

He continued by saying:

“Yes, the sail is a little cattywampus sometimes, but you’re still a sail that catches wind and takes us places. It’s much more interesting to let you sail us, even in a different direction, than to be without a sail.”

(Yes, you can pause and tear up, I do again just thinking about how meaningful that was.)

What a hit, in the most wonderful way, to my heart, to hear that he doesn’t see me and all these challenges as an anchor. He recognizes them, and that we are dealing with them, but he’s willing and wanting us to sail in the direction they take us, even when that makes us go in some unplanned directions.

Probably some of this is personality differences: I love to plan. I love spreadsheets. I love setting big goals and making spreadsheets of processes and how I’ll achieve them. In the current situation, I can’t make (many) plans, there are no spreadsheets or processes or certainty or clear paths forward. We’re in an ocean of uncertainty, with infinite paths ahead, and even if I set sail in a certain direction…I’m a cattywampus sail that may result in a slightly different direction.

But.

Knowing I’m a cattywampus sail, and not an anchor, has made all the difference.

If you’re reading this and dealing with an uncertain health situation (undiagnosed, or diagnosed but untreated, or diagnosed but with no certainty of what the future looks like), you may feel like you’re a boat adrift in the middle of an ocean. No land in sight. No idea which way the wind will blow you.

But.

You’re a boat with a sail. Maybe a cattywampus one, and maybe you’re going to sail differently than everyone else, but you probably are going to still sail. Somewhere. And your family and friends love you and will be happy to go whichever direction the wind and the cattywampus sail take you.

If you’re reading this and you’re the friend or family of a loved one dealing with an uncertain situation, first, thank you. Because you clearly love and support them, even through the uncertainty. That means the world.

You may not know how to help or be able to help if they need help, but communicating your love and support for them alone can be incredibly meaningful and impactful. If you want, tell them they’re a sail and not an anchor. It may not resonate with them the way it resonated with me, but if you can, find a way to tell them they and their needs are not a burden, that life is more interesting with them, and that you love them.

You are a sail, not an anchor, a post about dealing with hard health situations by Dana M. Lewis from DIYPS.orgThis has become a long post, with no clear messages or resolutions, which in of itself is an example of these types of situations. Hard, uncertain, messy, no clear ending or answer or what next. But these types of situations happen a lot, more than you know.

If you’re going through this, just know you’re not alone, you’re loved and appreciated, and you’re a sail rather than an anchor, whether you’re a zebra or a horse or a zebra-colored horse or a horse-shaped zebra shadow.

—

PS – I’ll also share one specific thing, for loved ones and friends, as something that you can do if you find out about a situation like this.

If someone trusts you and communicates part or all of their situation, and they specifically tell you in confidence that they are not sharing it publicly or with anyone else or with X person or Y group of people…honor that trust and request not to communicate that information. They have a reason, if not multiple reasons, for asking. When dealing with uncertain health situations, we can control so little. What we can control, we often want to, such as choosing when and how and to whom to communicate about our challenges and situations.

If someone honors you by telling you what’s going on and asks you not to tell other people – honor that by not disabusing the trust in your relationship. Yes, it can be hard to keep it to yourself, but it’s likely about 1% hard of what they are dealing with. Passing on the word becomes a game of telephone that garbles what is going on, often turns out to be passed on incorrectly, and causes challenges down the line…not in the least because it can harm your relationship with them if they perceive you have violated their trust by explicitly passing on information you asked them not to. And that, on top of everything else, can make a challenging situation more so, and it may then later influence how they want to communicate with others, potentially shutting down other avenues of support for them. So please, respect the wishes of the person, even if it’s hard for you. You can always ask “can I share this with so and so”, but respect if the answer is no, even if you would do something different in your situation. Because, after all, it is not your situation. You’ve been invited on the boat, but you are not the sail.

Best practices in communication related to writing a journal article and sharing it with co-authors

by Dana Lewis

I’ve been a single author, a lead author, a co-author, a corresponding author, AND a last author. Basically, I have written a lot of journal articles myself, solo / single, and with other people. One area in this process that I observe frequently gets overlooked is what happens during and after the submission process, as it relates to communicating about the article itself.

I’m not talking about disseminating the article to your target audience or the public, either (although that is important as well). I’m talking about making sure all authors know the article has been accepted; when it is live; have access to a copy of the article (!); etc.

Most people don’t know that by default, not all journals give all authors access to their own articles for free.

Here are some tips about the process of submitting and saving published articles that will help all authors – even solo authors – in the future.

Basically, help you help your future self! (As well as help your co-authors).

Journals typically only notify the lead/corresponding/submitting author about where the manuscript is in terms of revision, acceptance, and publication. That puts the responsibility on the lead/corresponding/submitting author to notify the full team of authors of where the article is in the process. Similarly, some journals will send a PDF/final copy of the proofed, final, version of record article to the lead author (not always, but usually), but that often does not go out to the full author team by default.

This means that it is the lead author’s responsibility to forward the copy of the final, PDF, proofed article to the entire authorship team so everyone has a copy.

(No, most of the time authors do not have free access to the journal they are submitting to. No, most authors do not have budget to make articles open access and free to all, which means unless they manage to snag and save this PDF article when it is sent to them at the time of publication, in the future, they may not have access to their very own article! Just because you, as the lead/corresponding author do have access, this does not mean everyone on your article team will.

I’m a good example of someone who authors frequently but is not at an institution and has zero access to any paywalled journals. If I’m not given a copy of my articles at the time of publication, I have to phone-a-friend (thanks, Liz Salmi, for being the go-to for me here) to help pull articles. There are things like S c i H u b, but they more often than not do not have super recent, fresh off the press articles. So yes, people like me exist on your authorship teams.)

Best practices for authors include:

  • Once you submit a manuscript, mark your file name (somehow) with “Submitted”. This way you know this is the version that was submitted. This is a useful step related to the below, we’ll come back to why we may want to use only the ‘submitted’ version.

    Example: “JournalAcronym-Article-Blah-Blah-SUBMITTED.docx”.

    Even as the non-lead author, when co-writing articles, as any type of author I prefer to have access to this submitted version. This way, I can see all incorporated edits and the ‘final’ version we submitted. There’s also cases where, see below, I need this for sharing it with other people.

  • Usually, the article goes through peer review and you get comments, so you make revisions and re-submit your article. Again, once submitted, make sure you’ve marked this as ‘revision’ somehow (usually people do) and that is was submitted.

    Example: “JournalAcronym-Article-Blah-Blah-SUBMITTED-R1.docx”.

    Again, best practice would be to send out this re-submitted revision version to all authors so everyone has it.

  • You may end up with multiple rounds of revisions and peer review (moving to R2, etc), or you may get an acceptance notice. Your article will then move to copyediting stage and you get proofs. It’s useful to save these for your own purpose, such as making sure that the edits you make are actually executed in the final article. This is less important for dissemination, though, although I do recommend giving all co-authors the ability to edit/review/proof and request changes.
  • Accepted, proofed, published! THIS is the step that I see most people miss, so pay attention.If you are the lead or solo author, you will probably get an email saying your article is now online, either online first or published. You may get an attachment PDF of your article. If not, you should be able to click on your access link and go to access the article online.

    IMPORTANT STEP HERE: go ahead and download the PDF of the article then. Right then, go ahead and save it.

    Example: “JournalAcronym-Article-Blah-Blah-Year.PDF”.

    (Why do you care about this if you are a solo author? Because the link may expire and you may lose access to this article. More on sharing your article below.)

  • Email your entire author team (if you’re not a solo author). Tell them the article was published; provide a link and/or the DOI link; and attach the PDF to the email so everyone on the team has a copy of the final article. Not all of your co-authors will work at an institution that has unlimited library access; if they do, that might change in the future. Give everyone a copy of the article to save for themselves.You can also remind everyone what the sharing permissions (or limitations) are for the article.

    For example, some articles are paywalled but authors have permission to store the final copy (PDF of the final version) on their own repository or not-for-profit website. For an example, see my research page of DIYPS.org/research – you’ll notice how sometimes I link to an “author copy” PDF, which is what this is – the final article PDF like you would get by accessing the paywalled journal.

    Other times, though, you are specifically not permitted to share the final/proofed/formatted copy. Instead, you’ll be allowed to share the “submitted” manuscript (usually prior to the revision stage). Remember how step 1 that I told you was to save a SUBMITTED copy? This is why! You can PDF this up; add a note to the top that references the final version of record (usually, journals give you recommended language for this) and a link/DOI link to it, and share away on your own site. Again, look at DIYPS.org/research and you’ll notice some of my “author copy” versions are these submitted versions rather than the final versions.

    You’ll also notice that sometimes I link to articles that are open access and then also have a link to a PDF author copy. This is in case something changes in the future with open access links breaking, the journal changing, etc. I have actually had free non-paywalled articles get turned into paywalled journal articles years later, which is why I do point to both places (the open access version and a back up author copy).

    Regardless of what the permissions are for sharing on your own website/repository/institutional repository: you as the author always have permission to give this PDF out when you are asked directly. For example, someone emails you and asks for a copy: you can email back and attach the PDF! This is true even if the permissioning for your own website is the submitted version (not the final version), you can still hand out the final, formatted, pretty PDF version when asked directly.

    As a related tip, this is a great way to disseminate your research and build relationships, so if someone does email you and ask for an author copy…please reply and send them a copy. (Saying this as someone without access to articles who sends requests to many authors to get access to their research, and I only get responses from 50% of authors. Sad panda.) Again, this is why it is helpful to get in the habit of saving your articles as you submit and have them published; it makes it easy to jump into the “Published copy” folder (or however you name it) and attach the PDF to the email and send it.

To recap, as a best practice, you should disseminate various versions of articles to your entire co-author team at the following points in time:

  • Original submission.

    Suggestion: Write an email, say you’ve successfully submitted, remind everyone which journal this was submitted to, and attached a copy of your “JournalAcronym-Article-Blah-Blah-SUBMITTED.docx”(If you end up getting a desk rejection, and you are re-submitting elsewhere, it is also nice to email co-authors and tell them so. You don’t necessarily need to send out a newly retitled version, unless there’s new changes to the submission, such as if you did go through a partial round of peer review before getting rejected and you are submitting the revised version to the new target journal.)

  • Revision submission.

    Suggestion: Write an email, say you’ve successfully submitted the revisions, remind everyone which journal this was submitted to, and attached a copy of your “JournalAcronym-Article-Blah-Blah-SUBMITTED-R1.docx” and the reviewer response document so everyone can see how edits/feedback were incorporated (or not).

  • Acceptance.

    Suggestion:

    A) Forward the email if it has the PDF attached to your full author team. Say congratulations; the article was accepted; and point out the article is attached as PDF.

    B) If you don’t have a PDF attachment in your email already, go to the online access link the journal gave you and save a copy of the PDF. Then, email the author team with the FYI that the article is live; provide the link to the online version; and attach the PDF directly to that email so everyone has a final version.

    Regardless of A or B, remind everyone what the permissions are for sharing to their own/institution repository (eg final PDF or use the submitted version, which you previously shared or could also re-share here).

Bonus tip:

Depending on the content of your article, you may also want to think about sending copies of the final PDF article to certain people who are not co-authors with you.

For example, if you are heavily citing someone’s work or talking about their work in a constructive way – you could email them and give them a heads up and provide a copy of the article. It’s a great way to contribute to your relationship (if you have an existing relationship) and/or foster a relationship. Remember that many people will have Google Scholar Alerts or similar with their name and/or citation alerts from various services, so people are likely to see when you talk about them or their work or are heavily citing their work. Again, some of those people may not have access to your article and may reach out to ask for an article; you can (and should) send them a copy! (And again, consider thinking about it as a relationship building opportunity rather than a transactional thing related to this single article.)

I would particularly flag this as something to pay attention to and do if you are someone working in the space of patient engagement in healthcare. For example, if you write an article and mention them or their body of work by name, it would be courteous to email them, let them know about the article, and send them a PDF.

Otherwise, I can speak from the experience of being talked about as a patient like I’m an ant under the microscope where someone cites an article where my work is mentioned; talks about me by name and references my perspective; and I get a notification about this article….but I can’t access it because it’s in a paywalled journal. Awkward, and a little weird in some cases when the very subject of the article(s) are about patient engagement and involving patients in research. Remember, research involvement should include all stages from design, planning, doing the research, and then disseminating the research. So this meta point is that if there is scholarly literature of any kind (whether original research articles or reviews, commentaries, letters in response to other articles, etc) talking about specific patients and their bodies of work – best practice should be to email them and send a copy of the article. Again, think less transactional and more about relationships – it will likely give you benefit in the long run! Plus, less awkward, a short-term benefit.

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best practices for communicating with co-authors about published articles, by Dana M. Lewis from DIYPS.orgAs an example for how I like to disseminate my articles personally, every time a journal article is published and I have access to it, I updated DIYPS.org/research with the title, journal, a DOI link (to help people find it online and/or cite it), and a link to the open access version if available and if not, an author copy PDF of the final or submitted version. So, if you’re ever looking for any of my articles, you can head there (DIYPS.org/research) first and grab copies any time!

If you are looking for a particular article and can’t find it or it’s not listed there yet (e.g. likely because it just came out and I haven’t been sent my own copy by my co-authors yet…), you can always email me directly (Dana@OpenAPS.org) and I’m more than happy to send you a copy of whatever version I have available and/or the final PDF once I have access to it.