The main outcome of our study is a characterization of three needs that arise when patients read progress notes, and detailed observations of how they could be effectively addressed. Each need below is described in terms of a problem and the opportunities it entails. In general, the observations we share in the problem sections follow from patients’ thinkaloud reports, reflections on the reading task, and reflections on past experiences with notes. Observations in the opportunities sections generally arose from discussion of the mockups. We explicitly state in the text whenever this is not the case. Below, we describe the three needs:
6.1 Directing Attention
The problem. Notes were written in a way that obfuscated information that patients cared about. Patients described their notes as a “
dump” (P1), “
pages of kind of mush” (P2), and a “
long block of text” that “
bogs you down” (P4). For many patients, the information they found most informative related to the clinician’s assessments of their condition, and plans for their upcoming care (
N = 3). This information was often buried in the note, appearing at the very bottom as might happen if a note is ordered according to “SOAP” convention (see Section
2.1). Patients therefore sometimes scrolled through considerable amounts of irrelevant information before finding information that was useful to them. P10 pointed proposed an alternative organization:
I would almost rather see the assessment and plan at the top, because why should I have to scroll down to the bottom to figure out what I need to be doing?
Many patients pointed out parts of their notes that felt irrelevant (N = 4). Their notes appeared like the clinician was trying to “write down everything” (P9). Sometimes information was irrelevant because it was simply already known the patient. As P9 put it:
I don’t need to know what my prescriptions are, I know that already. It’s a lot of information, and she’s simply writing down what I told her. I don’t want to be reminded of everything.
Sections of the note that some patients found irrelevant included the past medical history (
N = 4) and medication lists (
N = 2). One such medical history section is shown in Figure
1; passages like this could be dense and long. Patients frequently believed that parts of their notes were copied from other places in their record (
N = 3), or from different sections of the same note (
N = 1). Sometimes, the included information felt extremely dated. P14 described a case where their clinician referenced a finding from about 60 years prior and asked “
who cares now?” P10’s note included pages of pasted text about their pancreatic cancer history copied from prior visits that spanned from weeks ago through about 8 years prior.
Patients also described skimming their notes (N = 2); P4 felt that clutter led them to skim (N = 1). Additionally, patients shared concern that they might miss something important if they did skim (N = 2). P13 for instance described that “I might miss stuff because I’m thinking there’s nothing else there but really they hid a little special thing... like the first [note I read], where they had upped [the dosage] from 2,000 a day to 4,000 a day.”
Opportunity: Automatically emphasize important content. One role that intelligent interfaces could play in helping a patient read notes is in directing attention to the content that will be important to a patient. As P15 put it, the patient could receive help “
differentiating what’s relevant and what’s not, so that I know I can kind of skip unless I want to review where we’ve been and where we’re going.” One aspect of the mockups that resonated with patients was their use of standard visual emphasis primitives like bolding, highlighting, and font choice to make important text stand out (
N = 2). Some of these affordances are already in notes—for instance, P10 pointed out that certain lab results were highlighted to indicate results that were out of range, and appreciated that “
I won’t have to do a lot of work there because they highlighted the numbers that are different now.” Patients desired similar emphasis of other kinds of information. P8 believed that the
lab interpretations mockup (see Section
3.2) would “
answer a lot of questions” highlighting the subset of tests that were relevant to a patient’s diagnosis. P15 suggested that medication lists also be styled in a way to draw attention to those prescriptions that changed in dosage since prior visits.
Opportunity: Automatically deemphasize insignificant content. Patients also envisioned reading experiences where irrelevant parts of the note were deemphasized. As noted above, during the reading activity, patients often found sections like prior medical history and medication lists to be irrelevant. P9 called for such information to be removed from the note wholesale:
Take out the medical history unless we discuss it. Take out the demographic information... I would expect the notes to be tailored to this exchange...they’re not.
Other patients envisioned forms of deemphasis that preserved the original content. P2 asked for a note where they first saw high-level takeaways about the visit, and then could access details afterwards on-demand. P6 proposed initially hiding some classes of information by default and making them accessible by clicking simple labels, stating that “allergies and medication you’re on makes going through the note a little tedious. You can put in something like ‘click to see allergies’ and ‘click to see medications’ and ‘click to see past surgeries.’”
6.2 Phrase-level understanding
The problem. The most frequently reported impediment to reading was jargon. 14 of 15 participants pointed out jargon in their note that they found difficult to understand. Notes were described as using “dense verbiage” (P10) and that “you have to be extraordinarily literate to get some sense out of this” (P4). Jargon took the form of either medical words and phrases, or acronyms. 6 participants pointed out an acronym that was difficult to understand.
Understanding jargon was described as a “constant headache” (P10). One reason is that unfamiliar terms did not appear on their own, but rather as parts of passages with lots of jargon. Consider P11’s experience when reading a passage that noted “an isolated small ulcer at the ileocecal valve, and mild congested mucosa in the rectosigmoid colon with some cryptitis without changes of chronicity”:
I don’t know what an “ileocecal valve” is, I’ll probably have to look that up. I don’t really know what “cryptitis” is either, and at this point I’m just like whatever... I don’t know what any of it means.
Consider also the jargon-heavy passages that P12 was reading, shown in Figure
2. Here, the patient reviewed the notes their clinician had taken on a pre-operative cardiac risk assessment that had been performed. The outcome of the assessment is made up of a number of observations, all written in specialized terms that refer to procedures (e.g., “lateral right tubutlar microdisectomy L5-2”), observations (e.g., “significant cardiac arrhythmias”), and measures (e.g., “RCRI”). The passage as a whole is difficult to understand, not to mention the specific phrase “dyspnea on exertion” that P12 had singled out as something that they felt was important to understand. Some participants described giving up on trying to read a passage after encountering a lot of jargon (
N = 2).
During our analysis, we believed that at least 3 participants misinterpreted the meanings of acronyms in their notes. For instance, P2 did not know the meaning of “ED” (which likely stood for “emergency department”). They hesitated to look up the meaning of the acronym on the web because they expected there would be multiple expansions of the acronym and no easy way to tell which one was correct. Eventually, they mistakenly concluded that the acronym might be related to the procedure they underwent during the visit.
Several patients described that they might look up the meaning of a phrase, for instance by using web search (N = 3), though we note that this may not be an adequate solution. As P2 pointed out, some medical terms have multiple meanings, of which only few are relevant to them. Some patients furthermore reported that they did not feel equipped to read the medical literature online (N = 2).
It was not uncommon for some of the words and phrases in a note to be worrisome (
N = 4). P4 described how some phrases grab one’s attention, sharing that when clinicians “
say a word like lesions, cancer... then it’s like you can’t ignore them.” Phrases were described as setting off “
alarm bells” (P9) or “
red lights” (P10). Sometimes, it was exacerbated by the clinician styling text in a way that suggested concern, such as highlighting text in red (see Figure
3). P14 pointed out a passage where the clinician referred to them being at high risk for a condition referred to by an acronym:
I see this sentence: ‘The patient is at high risk for DM.’ Well I don’t know what that is, so yes it’s concerning but it’s not [supported with more details]. I would take this to my PCP and ask her if she’s in agreement that I’m at a high risk for whatever this is. And if so, how come [she’s] not telling me to [alter my behaviors or] calling the transplant team and telling them about my activities?
Phrases like these might be particularly useful to help patients understand the significance and implications of the medical assessments found in their progress notes.
Opportunity: Provide context-sensitive definitions of terms. Given how often patients spoke of jargon, it seems patients would benefit from easy access to definitions of unfamiliar terms and acronyms. Perhaps patients could be allowed to look up definitions right alongside the text. This was suggested by P5 after viewing the diagnosis explanation mockup when they asked, “when there are acronyms like HTN, could I just highlight that and see it?”
That said, there is considerable nuance in providing definitions in a way that is useful. P5 had clarified that sometimes medical definitions were not tailored to the patient; in the past they had looked up definitions and found it “pretty useless because it was a blood test [and] they have all these different measures but they don’t properly explain what it’s measuring.” If an acronym has multiple senses, as we observed sometimes happens above, the correct sense needs to be found. And furthermore, definitions should ideally be written in terms that match the context of the note. P15 described a prior experience reading a medical definition that was technically correct, but contextually inappropriate. They had looked up a medication their clinician had mentioned in their note called Atorvastatin in order to understand why it was prescribed. The definition told them the medication is typically used to mitigate high cholesterol, but because their visit was meant to address an eye infection, the medication appeared irrelevant. What the patient later learned was that cholesterol sometimes affects eye dryness. Without this context, the description of Atorvastatin was befuddling.
What is more, we note that not every patient requires help understanding the same terms. While many patients desired help understanding terms that were considerably specialized, others desired help for terms that have entered everyday lexicon. For instance, P15 told us that “
I even have to look up ‘ cataract’ every time I see it because I use it so infrequently that I can’t keep it in my head what it is.” As a whole, it seems that for definitions to be useful, they should define terms unfamiliar to the reader, in a way that is in and of itself jargon-free, and sensitive to the context of the note.
Opportunity: Incorporate abstractive summaries. Another method to help patients cope with jargon is to eliminate it altogether by supplying patients with more readable summaries of their notes’ contents. Some patients (N = 3) appreciated the plain language explanations in the summary mockup. P2 shared that such explanations are particularly helpful when the jargon-dense information appears alarming:
By giving you more information in a readable format and not confusing you, it’s gonna at least calm me down so I can wait a few days and hopefully get to the doctor by the end of the week...if you read an explanation in easier language to understand...it would be very helpful.
6.3 Tracing Lines of Reasoning
The problem. Patients often felt they did not understand the significance of information in their notes. They desired interpretation and contextualization of the kinds that could only come their clinicians, or others with shared health experiences. Most patients expressed a desire for more context from their clinician about information in their note (
N = 8). This was described as understanding the thought processes (
N = 2) of the clinicians, or “
getting in the doctor’s head” (P2). Some patients desired more insight into the next steps to take in their care (
N = 4). Others wanted to know why a lab or test result was ordered (
N = 3). Others wished for an understanding of how lab or test results related to a diagnosis (
N = 4), perhaps in order to better understand that diagnosis (
N = 2). Some examples of missing context and subsequent questions patients desired to be answered in their notes are described in Figure
4. P8 described frequently reading assessments in his notes to learn about their diagnosis of prostate cancer, and attempting to reconcile results with what it meant for the severity of their condition:
[My clinician would write that] the next step is a biopsy. They didn’t talk much about the Gleason scores or what they were. That was never communicated to me. I got that through digging through other treatment reports. I found out that the score generally gives you an idea of how aggressive the cancer is.
This experience was representative of several other patients, who also wished to understand the implications of a test result. P15 described finding a test result in their note that had been highlighted in the record—and so presumably had drawn the clinician’s attention—but it had not been explained to them. In particular, a portion of the results for a slit lamp eye exam was highlighted in red, reading “2+ Nuclear sclerosis” (see Figure
3 right side):
I want to know what [the clinician is] seeing and what it means. Is it something to watch out for? Is it important to get rid of it? What does it mean to your future, what is there to do about it?
Opportunity: Provide the missing interpretation. Perhaps notes could be augmented in a way that integrate the interpretation that patients desired into the note. P9 described one vision of what such interpretation to look like:
This is what I want: ‘I let the patient know she has this kind of cancer because her score is X. Her prognosis is Y. This is the treatment plan I’m recommending.’ I want a translation of what’s next for me.
In other words, the patient wanted a (notably brief) statement of the clinician’s thought process, connecting a test result to a prognosis and a set of next steps. Our
lab interpretation mockup (Section
3.2) addressed this issue, and was seen as providing compatible information to what was desired. In the words of P8,
[The design from this mockup] would really answer a lot of questions... it says what the recommendation is. I particularly like how the explanation explains why the clinician ordered the test, what it means given your past medical history it’s linking back [to], and what the prognosis is and the next steps.
Opportunity: Incorporate messages of reassurance. Sometimes, notes lacked the interpretive layer necessary for patients to fully grasp whether certain phrases, which might appear alarming (see Section
6.2), were genuinely cause for concern. In these cases, notes could be augmented to provide assurance around alarming information. Patients seemed to desire more direct connection with their clinician within the notes. This was evident in their appreciation for a personal tone from clinicians, either observed in the actual notes or demonstrated in the mockups (
N = 3). Specifically, P11 appreciated messages in the
reassurance mockup that conveyed good bedside manner, aligned with the note’s clinical content:
I understand the need for clinical explanations in the assessment, but the gray box [in the mockup] adds that bedside manner… like ’this is what we really need to focus on’ and ’this is what we’re going to do,’ ’I’m going to follow up with you,’ and ’when I am going to do x, y, z...’ I think that is very helpful.
I love this.
Opportunity: Connect to second opinions. In some instances, patients felt that the interpretation most beneficial to them may not come from the authoring clinician, but rather specialists in other fields (
N = 3). Managing one’s care could require curating an understanding that spans multiple specialties. For instance, as noted in Section
5, patients like P6 have emphasized the importance of avoiding “
tunnel vision” by their primary clinicians. P6’s condition intersects multiple specialties, which made it necessary to “
acknowledge the other specialties’ opinions to find the right plan for me.” This multi-faceted nature of patient care suggests a potential improvement in how progress notes are constructed and used. A more holistic approach might involve augmenting notes to provide patients with broader, more contextual perspectives. P2 described this as “
getting around the things that [the clinicians] don’t know and understanding things in context.” P5 suggested one solution: providing “
recommendations about following up on details, or consulting with other members of the medical team.” By integrating advice on whom to consult or how to follow up, progress notes could become a more dynamic tool, offering guidance beyond the immediate clinical encounter, and in turn help patients trace lines of reasoning across a larger health system.
Opportunity: Relate to other patients’ experiences. Patients saw value in the perspectives of other patients. This became apparent when they commented on the testimonials mockup. P8 articulated that seeing testimonials from patients with similar health backgrounds can expand one’s view of available options for their care. They desired an understanding of “all my options so I can decide what I like and what I don’t like, what I don’t understand, see what decisions I can make.” P8 imagined it as being particularly useful to compare their condition’s progression to others’ and learning of the treatments others had undergone. P6 similarly saw the value of testimonials in the suggestions they might yield for better understanding or relief. P8, however, expressed a preference for keeping patient-sourced information distinct from the main body of the note to avoid “muddying up” the clinical content.
