my black folder (delhi summer illness 1)

Since i have lost much of the two months to an extended illness — and since my original reason for getting into public health was unsatisfactory doctor-patient relationships and inadequate assistance helping patients navigate hospital and health systems — it seems to make sense to write about observations and frustrations i had seeking treatment in delhi. i offer this up in the spirit of participant-observation research — not seeking sympathy but trying to point out what is currently not/working. i definitely welcome stories from others seeking health-care in india or elsewhere in the comments: this is a conversation that requires much more attention and probably research.

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There are three disclaimers. First, i am an extremely privileged patient in Delhi and attend one of the (arguably) best private hospital chains in town. So my case should be taken as something of a ‘best case’ in terms of how i am treated and my experience navigating the system. Second, being sick has made me incredibly grumpy. Third, we are still not entirely sure what i had/have. Given the on-going outbreak of chikungunya in Delhi and my symptom set, this is a plausible guess — but in full disclosure, the test for this and multiple other viruses were negative. While many people in Delhi seem satisfied with being diagnosed with ‘a viral,’ not knowing what i have is hugely frustrating.

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Whatever i have, ‘joint pain’ does not do justice to the experience — i have had what i would classify as joint aches or pains in the past and this weren’t it. Overnight-onset arthritis begins to get to the point: too painful to walk properly thanks to weak and angry feet, ankle & knee joints; too stiff and painful to make a fist around a bottle of water and elbows too weak to support the bottle anyway; etc. Suffice it to say, rapid aging it isn’t much fun:

giphyLC.gif

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While this whole illness narrative begins a month back, this blog’s story starts today, as i am preparing to go spend a bit of recovery time with my parents in TX and get a second opinion in the process. My mom is scouting for a rheumatologist there (thanks, mom!). She wondered if i could just have my doctor here in Delhi just fax over my notes so far (because the new doc wants to review them before accepting me?). Well, no.

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Which brings me to my black folder. There is no patient filing system that stays at the hospital for me here in Delhi, though i presume the hospital tracks some sort of information linked to my mobile number in the computers at which people are always tapping (they are very capable of sending via emails the status of my reports or texting to quiz me on my satisfaction).

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Each visit generates quite a bit of paper for which i am responsible, making me in a very tangible way the curator of my health history. i find this slightly stressful and, again, unlike a lot of patients, i can read and comprehend the vast majority of what is in my file (handwriting aside), can sort through and put it in date order, and so on.

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At a minimum in a visit to my hospital, there will be the consultation fee receipt, the consultation notes + script and the receipt for medicines purchased. But, likely, there will also be an additional receipt for diagnostic tests to be rendered and then, at some point, the results of that test, whether it is a printout, a scan, an xray, etc. i have to carry all of these. These papers should be ready at all times. For example, vital signs are recorded on my consultation receipt for imperfectly clear reasons. The receipt is then taken out of my possession (ack! i need to photo that for insurance claims!) to be laid before the doctor, who sometimes notes down my vitals on a fresh notepad before beginning the consultation scribbling. More paper.

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For awhile, one pretends that the soothing seafoam-green envelope proffered by the hospital/clinic along with one set of test results will suffice for the burgeoning ream of paper. But any sort of ongoing illness puts that rapidly to rest. Your makeshift, portable medical record is suddenly and literally coming apart at the seams when you have an extended illness episode, along with your feeling of being able to present your case to another doctor (or to the same doctor, since they have nothing else to which to refer back).

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Now i have upgraded fro a tattered folder to one of those report-type folders with the plastic sleeves built-in — the kind with a tab on each sleeve, which i have labelled with the month. Each month contains all the the august sleeve is pree-tty full but it is doing the job nevertheless. Mostly.

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Over the course of this illness, i have worked to keep everything as organized in this folder as possible as a way of imposing some order on the multiple visits, the multiplying symptoms, the confusing test results and their implications for yet more tests. When your fingers aren’t working properly (or more generally when you are feeling like crap), it isn’t very fun to sort through these papers and supple-ly sliding them into the slippery plastic sleeve. It also isn’t particularly fun to clutch this increasingly sweaty folder while you try to navigate your way through jostling patients, especially when your standard elbows-out strategy has been rendered impossible. Hospitals, as i contend in future posts and as others have said before me, aren’t very easy places to be sick. And, at least in Delhi, to be without a chaperone/Moses.

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But one does carry one’s plastic folder to place before the doctor: see, i am a good patient. A conscientious patient. You can tell because my files are in order that i will probably try to follow your prescriptions and that i get what is going on here. And that this whole thing has been ‘going on’ far too long. We can both see that, right?

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i can’t pinch my fingers properly to pull the sheets out for you but here, this is the August sleeve. You can just pull them out and… sure, spread them all over the desk. Gah, this is the same feeling as when you had the immigration officer with your finger marking the visa page and they insist on closing the passport booklet and then casting you disgusted glances when s/he can’t find your visa. But worse.

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Yes, i could point(-ish) you to what you’re asking about… but rifling through will work eventually as well. Taking a call while you’re looking and while i’m sitting here will definitely help as well. Oh, you’re done? Then, sure, sweep everything back into a haphazard pile and then just… OK, bypass the plastic sleeve. Just close the cover over the whole mess. That’s cool. i just spent 3 minutes explaining how painful it was to work my fingers and i assume you were listening because you prescribed multiple blood-tests and several medications of questionable necessity. You even took notes. Including those notes, altogether, that’s four more pieces of paper i am going to acquire in the next hour. To add to that mess you just made of my medical history. To clutch-ish until i get home and then sort the whole damn thing again after the next painkiller to show the next half-interested doctor that i am a good patient, it’s just that the illness isn’t going away.

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Look, it’s all here in my folder. Dammit. The folder tied the whole thing together.

Brief Thought on Commitment-To-Analysis Plans

First, I am starting a small campaign to push towards calling ‘pre-analysis plans’ something else before the train gets too far from the station. Something like ‘commitment to analysis plans’ or ‘commitment to analysis and reporting plans.’ I have two reasons for this.

  1. PAP just isn’t a super acronym; it’s kind of already taken.
  2. I think the name changes moves the concept a step back from indicating that the researcher needs to pre-specify the entirety of the analysis plan but, rather, to indicate the core intended dating cleaning and coding procedures and the central analysis — and to commit to completing and reporting those results, whether significant or not. this shift, from a commitment rather than a straitjacket, seems like it would go some way towards addressing concerns expressed by Olken an others that the task of pre-specifying all possible analyses ex ante is both herculean and blinkered, in the sense of not incorporating learning’s from the field to guide parts of the analysis. the commitment, it seems to me, should be partly around making clear to the reader of a study which analyses were ‘on plan’ and which came later, rather than claiming perfect foresight.

Second, speaking of those learning’s from the field that may be incorporated into analysis… I had a moment today to think a bit about the possible views from the field that come from surveyors (as I am working on doing some of my dissertation analysis and already starting to form a list of questions to write back to the survey team with which I worked!). Among the decisions laid out by folks like Humphreys and Mckenzie in their lists of what should be specified in a commitment to analysis plan (doesn’t a ‘CAP’ sound nice?) about data cleaning, surveyors play very little role.

Yet a survey (or discussion) among survey staff about their experience with the questionnaire can yield information on whether there were any questions with which they systematically felt uncomfortable or uncertain about or that respondents rarely seemed to understand. Yes, many of these kinks should be worked out during piloting but, no, they aren’t always. Sometimes surveyors don’t get up the gumption to tell you a question is terrible until the research is underway and sometimes they themselves don’t realize it.

For example, in one field experiment with which i was involved, surveyors only admitted at the end (we conducted an end-of-survey among them) how uncomfortable they were with a short-term memory test module (which involved asking respondents to repeat strings of numbers) and that it was quite embarrassing to ask these questions of their elders. To the point that some of them breezed through these questions pretty quickly during interviews and considered some of the answers they reported suspect. Some wrote fairly agonizing short essays to me in the end-of-survey questionnaire (it’s a good thing to make them anonymous!), asking me to “Imagine that you have to ask this question to an elder…” and proceeded to explain the extreme horror of this.* As the short-term memory module was not part of the central research question or main outcomes of interest, it was not subjected to any of the audit, back-check, or other standard data-quality procedures in place, and so the problem was not caught earlier.

I can imagine a commitment-to-analysis plan that committed to collecting and incorporating surveyor feedback. For example, a CAP that stated that if >90% of surveyors reported being uncertain about the data generated by a specific question, those data would be discarded or treated with extreme caution (and that caution passed on to the consumers of the research). Maybe this could be one important step to valuing, in some systematic way, the experience and insights of a survey team.

*For the record, I can somewhat imagine this, having used to work in a call center to conduct interviews with older women following up on their pelvic floor disorder surgery and whether they were experiencing any urinary symptoms. In that case, however, most of the discomfort was on my side, as they were well versed in — and fairly keen to — talking about their health issues and experiences! Note to self: aim not to have pelvic floor disorder.

Aside

My Day Today: Dry Cleaning

[on phone, while in auto on the way to work]

<e: “Hi dry cleaner. I had to leave home for office, so I left one dress hanging on my door. Can you please pick it up?”

Dry Cleaner: “Sure, I will send a boy to pick it up.”

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– 10 minutes later –

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Dry Cleaner: “The boy is standing outside your door and says no one is answering.”

Me: “Yes, I had  to leave for office, so I left one dress hanging on my door. Can he please take it?”

Dry Cleaner: “Yes madam.”

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– 3 minutes later –

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Dry Cleaner: “The boy says there is only one dress.”

Me: “Yes, there is one dress hanging on the door. Can he please take it to clean?”

Dry Cleaner: “Yes madam.”

Service and perseverance and convenience, yes.

Straightforward, no.

Aside

sherlock holmes and the princess bride

when i need to decompress, zone out, and fall asleep, i have a tendency to watch familiar, i-can-recite-by-heart movies or TV shows to help. just enough distraction to close down my other thoughts, not gripping enough to keep me awake.

the ‘sherlock‘ TV series has joined these ranks. the more i watch ‘a study in pink‘ (if i stay awake to the near-end)  the more i have to ask whether i, during the scene of selecting the good or bad bottle, could have resisted making the cab driver a sicilian (or making another princess bride reference).

props to the screenwriters on avoiding the temptation.

Aside

i’m not sure that means what you think it means (gold standard)

some thoughts, from peter byass, here, for the next time you want to refer to a technique as the ‘gold standard’ and what may be behind such a guarantee:

The verbal autopsy literature has extensively used and abused the concept of “gold standards” for validating cause of death determination. Metallurgists would say that 100% pure gold is an impossibility; the highest possible quality is normally certified as being 99.9% gold, while most of the quality-assured gold we encounter on an everyday basis ranges from 37% to 75% purity. It is perhaps also worth reflecting that 99% pure gold is an extremely soft and somewhat impractical material. Cause of death, on the spectrum of measurable biomedical phenomena, is also a somewhat soft commodity. For that reason, any approach to assessing cause of death involves alloying professional expertise with the best evidence in order to generate robust outcomes.

h/t jq

presentation tricks & tips from the US presidential & VP debates

presidential 1: “no, i wouldn’t have gone over the time limit if you hadn’t interrupted me to point out the limit.

VP: “no, i can’t give you more specifics but i can repeat the same thing, slower and with hand gestures. (or try link here.)

presidential 2: don’t do this while other people are talking. the slower, non-defensive response can work quite well. also, how you listen is important.

presidential 3: actually, the third debate was pretty upsetting. maybe the daily show will pull me out of it. a few things:

  • clever lines and the now-ubiquitous ‘zingers‘ stick, even if they are untrue (and, yes, i thought obama had some good ones but, no, they weren’t fully accurate). this actually makes the lesson of romney’s leaked first debate strategy not that one shouldn’t spend time coming up with zingers, it’s just that you shouldn’t let anyone find out that you are doing so because it sounds silly if you have to practice.
  • can we stop pretending that ‘flip-flopping’ is such a horrible thing? i agree that saying different things to different audiences is bad, as is the need to change one’s opinion because you spoke too hastily the first time around. but changing one’s position or, i don’t know, updating one’s prior based on new information, should be accepted, if not rewarded.
  • can the phrase ‘you’re all over the map’ be stricken from foreign policy debates? first of all, because that should simply be a statement of fact in a foreign policy debate. and, second, because it was not a statement of fact about last night’s debate. if we were talking about a map that, say, alexander the great (actually, erosthenes) had, then, yes, perhaps the conversation on 22Oct would have appeared to be ‘all over’ it.
  • really, nothing on ‘development’ efforts? no hearts and minds and bodies and lives and livelihoods? geez, mcgovern for president.

i am not sure that means what you think it means (origins of metaphors in development, german folk-stories edition)

thanks to having professors who are curious about the origins and use of phrases, i have recently had the occasion to consider two phrases in common use — and likely mis-use. these would be hilarious mid-understandings as the basis of a sit-com or, as here, folklore. as the basis of policy, not so much.

1. magic bullets.

to be sure, i learned about this one because i went to see the black rider, not because i can claim a love of german opera or a deep understanding of german folklore, though both would be good life goals. the underlying story of ‘magic bullets’ – from the German freischuetz (marksman) folk-narrative – is a faustian bargain in which someone needing to prove hunting prowess takes n special bullets from a stranger, n-1 of which will do what the bargainer needs and 1 of which is under the control of the devil. oops.

why ehrlich would choose ‘magic bullet’ to represent the quest of his research, i am not quite sure. in the end, magic bullets may be a fairly apt metaphor for much that we actually do in public health (and development — targeted, purposive actions in one area with unintended consequences in another) but as a description of what we are trying to do, it seems less desirable.

silver bullets (from ancient Greek mythology) seem the slightly more appropriate aspirational metaphor (also good for killing werewolves); however, maybe this whole confusion with the unintended consequences and deal-with-the-devil thing is a good reason to drop the idea of looking for single causes &/or solutions?

or else, we need to have charlie daniels’s fiddle skills involved in a whole lot more of our work.

2. pulling oneself up by one’s bootstraps.

bootstraps are those loops on the back of your boots that help you pull them on. using them to pull yourself up, on the other hand, is apparently physically impossible (“for a force to accelerate an object it must come from outside it. you can’t pull yourself up by your own bootstraps. anyone who says you can is literally wrong.”).

which is why it made for such a hilarious story as originally told — it’s an adynaton (new word of the day!).  the original version came in one of two forms. either from tales of davy crockett who, along with other feats, was said to have pulled himself over a fence by his bootstraps or from the german tales of baron muenchhausen‘s adventures, who described how he fell into a swamp and lifted himself out by pulling on either his ponytail or his bootstraps. if you watch ‘house’ or are just otherwise savvy, you’ll recognize that his name also serves as the  basis of the disease of fictitious disorders.

there may well be counterparts to these stories in other literary traditions — i’d be happy to hear about them!!!

(the end of one of the referenced posts also reviews daily show’s coverage of candidates out-bootstrapping one another (not an actual over-the-fence, out-of-the-swamp competition, although that would be amazing and i would like to suggest it in place of one of the debates). surely it owes something to monty python’s four yorkshiremen sketch, which culiminates with, “right. i had to get up in the morning at ten o’clock at night, half an hour before i went to bed, eat a lump of cold poison, work twenty-nine hours a day down mill, and pay the mill owner for permission to come to work, and when we got home, our dad would kill us, and dance about on our graves singing ‘hallelujah.'”)

(thanks to guenther fink & josh salomon for raising these issues, as well as the magic of wikipedia)