inverted quarantines, mosquitoes & the common man in delhi

This post has been some time in the making, ever since Raul Pacheco-Vega introduced me to Andrew Szasz’s concept of an ‘inverted quarantine,’ defined further below, and fabulous Manpreet Singh and i started kicking around how the idea applied to our lives in Delhi. This week, a few events, including a desperate effort to stay awake to fend off jetlag, have conspired to help this post come together.

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i’ll start with the idea of a quarantine, since it has such a delightful etymological origin. The phrase comes from the Italian for ’40,’ the number of days a ship needed to stay in the Venetian harbor before its booty or crew came ashore, a practice put in place during the Black Death of the later 1300s. Specifically, the ships subjected to quarantine (or forced isolation) were those returning from plague-stricken countries. The idea, as Szasz elaborates, implies the following set-up: we (Venetians) are mostly in a healthy environment, from which (potentially) diseased individuals need to be kept out. It is a collective (if enforced) action to preserve the health of the environs and, therefore, the people living in it.

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An inverted quarantine is a response to a reversed scenario: an unhealthy environment in which individuals wish to stay healthy. Worse, these individuals have become “fatalistically resigned to it being a dangerous world” (2006). The response is a middle-class or elite response (in general) with two components intended to isolate individuals and their households/immediate environments from harm:

  • An individual response: Despite ‘the environment’ (air & water, in particular) having a generally public good quality, those constructing inverted quarantines are engaged in a response that “is individualistic in both goal and method.”
  • A consumeristic response: A sense that the way to isolate oneself and one’s family from harm requires the purchase of specialized commodities, such as bottled water.

It is the latter point, in particular, that converts a citizen (a political actor) into a consumer, who exercises a certain form of exit (to the market) rather than (political/public) voice, thus functioning as a political anesthesia.

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This idea of building bubbles through consumer purchases has many examples in Delhi, with bottled/canister or water filters as a prime example. The air quality in Delhi has recently taken on a similar, if (deplorably) much less wide-spread, response. If you haven’t been paying attention, the air quality in Delhi is real bad (as in, the worst by measures) and air pollution is real bad in general.

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To illustrate, here is a typical workday morning for me in Delhi, which has only been made more extreme by my recent acquisition of an air quality monitor for my house.

  1. Leave the house with my air filters (n=3) running
  2. Hope that my maid (because… India) doesn’t turn off the filters during the day
  3. Wonder how much electricity I use and therefore pollution I cause running my air filters all the time. Then promptly forget about this.
  4. Wish my maid wouldn’t leave the doors open after she makes breakfast.
  5. Chuckle about how my landlords believe that the air in their small front yard is ‘fresh’ even if the rest of the city is dirty.
  6. Get into an auto-rickshaw (open-side 3-wheeler). auto.jpg
  7. Put on my fancy, Paris-ready vog mask (mine is actually plain black — but).mask
  8. Think about how i should buy masks for my mostly faithful autowalla and then wonder if he would use them (curse my non-existant Hindi).
  9. Arrive at office, where air filters are running most of the time, except during skype calls.

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This is not a perfect bubble but it is certainly an attempt at insulating myself nevertheless: an inverted quarantine that i have tried to construct to protect me at home, at work, and in between. i have tried to make myself part of an air-istocracy.

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And, it is worth noting that there is relatively little political action around air quality. The government has experimented with car-reduction measures but, at least anecdotally, folks were far more interested in whether this reduced their commute time than whether it lowered the particulate matter in their air.

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The idea of an inverted quarantine, as presented by Szasz, rests on both the individual and the consumer response. Given both my research and the current outbreaks of dengue and chikungunya and other viral fevers in Delhi, i have been thinking about mosquitoes and whether the concept applies — both whether mosquitoes constitute the sort of unsafe air/water/land of which Szasz writes and also whether the individual/household response is sufficiently consumeristic to count as an inverted quaratine.

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To be glib, we could lump mosquitoes and the diseases they carry in with ‘bad air’ (literally the origin of ‘malaria’) and solve the first problem.

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And the idea of a consumeristic response to mosquitoes may apply to at least some of the options available. Purchasing a bednet allows me to protect my sleeping space from most night-biting mosquitoes, though we have all had the experience that one always manages to get it. Various sprays, creams, bracelets, coils, plug-ins, and electrified tennis racquets can help to ward off mosquitoes but none of them seem to keep all of them away.

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There are also non-consumer responses to limiting mosquitoes and therefore mosquito-borne diseases in the confines of one’s house and grounds, such as covering or draining standing water, as recommended by the government in posters, including this one from my neighborhood:

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It is not quite clear how to classify these individual / private-good responses to larger public health problems that don’t have a strictly product-based bent within a framework of inverted quarantines — but they are certainly an important type of response in India. A similar idea can be found in the constant cleaning of private spaces but the dirtiness of public spaces (as catalogued in Maximum City, inter alia), the intense faith put in ‘home [prepared] food’ as opposed to dirty and dangerous ‘outside food’ and other ideas that mix real ideas of toxins and pathogens with older ideas of purity and pollution (i believe relating to ideas of protecting oneself from social threat, as Szasz discusses).

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In any case, mosquitoes, unlike air quality, are getting political attention in Delhi — or at least, people are calling out the lack of political action and the over-reliance on promoting individual preventative measures in the face of an outbreak. Mosquitoes are annoying little buggers and can (visibly) get through any inverted quarantines we might construct, so perhaps this call for more public, preventative action is not surprising.

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For my thesis research in Ghana, to better understand the context in which a new malaria treatment program was being introduced, i undertook a media content analysis of how the term ‘malaria’ was deployed and discussed in online newspapers during the relevant time period. Most of the discussion was around specific malaria donations that had come in, reporting of malaria numbers at different state health facilities, or actions that the government had or would soon take around malaria prevention and ‘environmental hygiene.’ One of the presidential candidates being covered during that time was particularly concerned about environmental cleanliness and ‘filth.’

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But a few mentions cast malaria as a disease of common humanity, from which neither rich nor poor could make themselves perfectly safe — an actual or imagined inverted quarantine does not exist (especially against day-biting mosquitoes). It (vulnerability to malaria, mosquitoes) was used as a political symbol of issues that affected all Ghanaians. This idea of malaria and the mosquito as threatening a common humanity — the common man — has a slightly funny resonance with the current political situation in Delhi, where the ruling Aam Aadmi Party (literally, ‘the common man party’) has come under fire for insufficient public health action (rightly or wrongly) in the face of an outbreak of mosquito-borne viral fevers.

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The idea of the non-availability of inverted quarantines in the face of the biting mosquito as a source of political action deserves more attention, as does trying to shake people out of believing that their inverted quarantines against polluted air are sufficient (or indeed, that the air is something from which one requires protection) — ideally stimulating meaningful political action. Just thinking about Delhi, i am not yet convinced that measures need to be both individual and consumeristic to act as a political anesthesia. If the goal is to explain a lack of political action, then more conceptual work is needed. For example, as long as my landlords believe their front yard is fresh/unpolluted because they keep a nice garden (and others at their club start to get worried as well), it is unlikely they will be taking any political action about air pollution. Nevertheless, the idea of an inverted quarantine and how it limits public outrage and civic response seems like a useful concept for studying urban (perhaps in particular?) responses to environmental (and pathogen?) threats, not just in the US, where Szasz focuses, but far beyond.

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To close with a small piece from Szasz’s 2006 presentation paper for the Sustainable Consumption and Society Conference:

Inverted quarantine is a twisted and perverse sort of environmentalism. The person who engages in it clearly recognizes that there is a problem [even if misdiagnosed?], is in fact quite distressed by the problem, and intent on doing something about it. Such a person, however, is deeply pessimistic about real change, unable to imagine that things can actually improve, and therefore fatalistically resigned to it being a dangerous world.

Sounds like a lot of Dilliwallas to me.

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doctor marketplace & lack of system improvement (delhi summer illness 4)

One of the first things you learn when studying health systems is how imperfect health care markets are — limited time or ability to shop around, massive information asymmetries, etc. It is interesting, then, how very marketplace-like was my experience during my most recent illness episode. It is even more interesting, i think, that this took place within the same corporate hospital system — calling into question the very benefits of such an aggregated system.

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To briefly recap,  i had (still have, actually) symptoms consistent with chikungunya,  [~chicken-goon-yuh] which is currently breaking out in Delhi but which was not actually confirmed in my case. i managed to visit three doctors in as many days to try to figure out what was going on, which is probably the most ‘shop-around’ approach i have ever taken to a single illness episode. [The desperately curious can read the previous posts on observations from navigating the hospital and health system while being sick: here, here & here.]

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First, i saw my regular GP. Then, with some urging, i saw a recommended GP. In the interim, i had also scheduled an appointment with a rheumatologist given (a) relevant family history and (b) that my only early symptoms were joint pain , weakness & fatigue — no fever nor rash. In this post, i just focus on the GP visits.

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The visit to my regular GP on Tuesday led to my being tested (IgM) for chikungunya as well as dengue and malaria (as precautions than really being indicated). i learned on Wednesday morning that the IgM was negative but as my white blood cells were high, i was put on an antibiotic (for a ‘post-viral infection’) and given the obligatory paired antacid + anti-inflammatory as well as calcium for unexplained reasons. i actually don’t think an antibiotic was indicated and was a bit annoyed when i asked if anything else could be causing the joint pain and was told no, which is of course a silly statement since plenty of things cause joint pain, not all of them infectious.

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In the interim, through the healthcare recommendation grapevine that is Delhi, i learned about another doctor who was recommending a different chikungunya test (and promoting himself as a chikungunya guru). With some urging, i followed-up there was well on Wednesday afternoon, for a (super) special clinic double-feature day.

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The second GP i saw was in the same corporate hospital system but at a different branch, less than 5 km away. i came in with high hopes for the recommended doctor, most of which were dashed over the course of the short visit. i should note that for this visit, my (male) colleague kindly accompanied and the (male) doctor spent much of the limited attention he gave to either or us (rather than his computer screen or his phone) addressed to my boss. i have never felt so blatantly part of a capitated (pay-by-patient or ‘per head’) system as i did over the course of this week of doctor visits. (A particularly endearing moment came when i asked the doctor to explain my morning’s lab report and why the white blood cells might be elevated — and i was told to google the answer.)

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The doctor spot-diagnosed me with chikungunya while i was still shuffling in the door, before i was able to sit down and say anything beyond ‘joint pain.’ Perhaps some patients are impressed by this sort of act. i was not. The doctor did very little looking at me and certainly never touched me. i had to really push to get out a description of the specific type of joint pain i was experiencing. Much of the time he addressed himself to a desktop computer screen, where he edited old case notes as mine, such that my print-out included inaccuracies, such as stating that i have no medical allergies (i do, including to some painkillers and anti-inflammatories; moreover, he never actually asked me this question).

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At first the doctor tried to talk me out of getting another blood test (PCR, this time) since it was expensive (true) and since he was so certain i had chikungunya (ass).

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He then spent at least a minute of our already poorly utilized 10-minute appointment slot to denigrate my normal GP, in a mock-humble way that acknowledged him as a junior doctor and my usual GP as a senior doctor — but also that he was much more in the trenches at his location, as opposed to her more posh and secluded (<5 km away) location. (Again, recall these are both part of the same hospital system.) He was seeing all the chikungunya cases and she wasn’t, so he knew how to spot-diagnose and which test to run.

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He then told me that when my test came back positive, as he was sure it would (it didn’t), i should switch doctors. He also poo-pooed her having prescribed me calcium and instead prescribed a multivitamin; he also prescribed a different painkiller + antacid combination for no apparent reason. (i should note that neither doctor actually asked what i was already taking in the way of vitamins before prescribing these to me — i went ahead and bought everything i was prescribed so i could show off the detritus collected for treating a suspected virus over the course of three days.)

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Perhaps to some patients, this kind of confidence and blatant salesmanship are appealing and hearken to days of doctors-as-gods. Not to me. So, at a minimum, as a salesman, this doctor has no idea how to read a customer.

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In fact, his actions seem the very definition of not working in a system or a sign that the system is not working. He could have, instead, said he would call my regular GP and tell her about the extent of the outbreak and about which test to run. Or report it upwards so that there could at least be systemic learning within the hospital system. But, no, he opted to promote himself. And perhaps this is what the ‘system’ incentivizes. But, if so, then what exactly is the benefit of being part of a hospital system if neither my personal records nor basic system- or city-wide learnings can be shared among doctors within and across sites?

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To return to the initial issue of whether healthcare functions as a market, to the extent that it does, people often rely on quality indicators that may not be directly related to accurate diagnosis or perfect treatment (which are sometimes hard to assess from the patient point-of-view). So, there is cleanliness and comfort of the surroundings (the corporate chain does reasonably well on this). There is whether you feel listened to and respected as a patient (fail). Or, if your doctor isn’t particularly nice (we all secretly want to be treated by Dr. House), you should at least trust him or her but neither GP in this case did anything particularly trust-earning (and did some things that were trust-burning from my way of thinking). There is convenience (yes in terms of online scheduling but no in terms of tracking patients through the system).

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And, one would think, there would be a benefit of aggregating learnings and best practices across the system — but this appears to not be the case. The corporates may want to think again about how they are fulfilling quality demands.

 

emoji from docs & coming home (delhi summer illness 3)

 One of the most interesting things i have noticed over this illness episode, though it’s been present throughout my three years in Delhi, is how accessible doctors are expected to be here – and how easy it is to fall into a habit of WhatsApp-ing (now officially a verb?) with your doctor (and sometimes getting a ‘thumbs up’ emoji in reply, which is oddly validating after you report that your fever has broken or some other milestone has been reached — even when you know your doc may not actually know with which patient s/he is communicating, something i learned later!).

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To begin this potential relationship, you receive (at least one of) his/her mobile number on the paper you get with the notes on your consult as well as the prescription (one of the many pieces of paper one accumulates).

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i am hardly alone in availing the doctor’s number, as evidenced in part by the number of calls or texts a doctor might take during your 10-minubte appointment slot: clarifying prescriptions, checking whether a clinic visit is necessary for certain symptoms — and so on. This disruption is compounded by nurses, patients and others coming in and out of the consult room. A closed door has very little meaning — or at least not the meaning i expect it to have. (The curtain around the examination table is, mercifully, more sacred.)

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As indicated, i now WhatsApp fairly regularly with one of my doctors, which was quite comforting when, a day after one of my appointments, i woke up from a nap with a fever and a full-body rash. i was able to text her and received a response to send a picture of the rash. this raised some new and interesting questions:

  • Is it easy to operate a camera/phone when your fingers are arthritic? (answer:no)
  • What is the best lighting to capture a good picture of a rash? (answer: still unclear. all my pictures looked like everything was red, which was only partially true)
  • Is there a good way to get a picture of a full-back rash without ending up with something risque to send to your doctor? (answer: i couldn’t do it successfully, so these pictures did not go)

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These more informal chats also facilitate meeting outside the corporate private hospital. From studying health systems, i know that these sort of evening and weekend visits at small, private clinics are in many places a common feature of the public health system (government doctor by day, private practitioner by night). This was my first experience of big-private by day, small-private on the weekends. There were several pluses to seeing my doctor at her family’s imaging center rather than in the big hospital — lower consult fees, longer appointment time, more flexible appointment time (i.e. the morning after the rash broke out), less crowded. Mixed in with some guilt of being in a waiting room mostly of expectant mothers awaiting ultrasounds while i am blatantly feverish.

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As a small vignette from this particular visit to the imaging center, at about the lowest point of the illness (limited mobility + fever) there was a gap between when the doctor finished her consult and when i could get a particular needed scan done. The doctor let me nap on the exam table (no curtain) while she preceded with another consult in the same room. No one else seemed fazed and i certainly didn’t care by that point.

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Another manifestation of this tendency towards convenience and connection is the wide availability of diagnostic services that ‘come home’ (or ‘come to office’). In any case, diagnostic and imaging centers are quite often standalone entities, separate from the doctor’s practice (which also means you can walk in and ask for pretty much any test you want). Now of the big chains have set up mobile services. i have yet to avail this as someone pointed out that i may not want be a(n ill) woman home alone and invite someone in to my house to take my bodily fluids — but everyone who has tried this seems to find the service quite professional as well as convenient.

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When at a pharmacy last week for my ever-changing cocktail of painkillers, i noticed a sign alerting me that they can come home to do full cancer screens for the whole family. Which, (a) some things still feel like they should happen in a clinical setting — but perhaps i am old-fashioned? and (b) what a dreadful family bonding activity.

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In terms of communications with doctors and getting clinical services outside the clinic, i presume in Delhi, i am witnessing both the past and the future. There is still a tradition/expectation (among the middle- and upper-classes, in any case) of a family doctor who lives near by, who is also a family friend and might come over for chai and check-up and is available by phone when needed. So (working hypothesis) the past is setting present expectations and practices around access to some extent. But, if diagnostics can be untethered not just from the clinic but from brick-and-mortar in general (at least for collections, and then reports emailed to you), i suspect we might start to see this become a far more common practice globally.

going viral in delhi / is diagnosis a luxury (delhi summer illness 2)

In this post, i continue to try to make research and observational hay out of my own illness in Delhi (starting here). As a quick re-cap, there was a week of severe, arthritic joint pain and weakness, which started to let us slightly right when the rash and fever kicked in. Those were mercifully short-lived but the joint pain has continued for over a month.

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When you shuffle (quite literally since my feet weren’t keen on bending and my hips weren’t into a long stride-length anyway) into a doc’s cabin in Delhi and the first words out of your mouth are ‘joint pain’ and it is dengue and chikungunya season, these are the immediate suspects (also here for news of outbreak). One of the doctors i saw  was happy to diagnose me by sight and actually, actively encouraged me not to bother with the (pcr) bloodtest, since (he was a bit of an overconfident ass and) the test is expensive (about INR 5000 or roughly US$ 75 — definitely out of reach for a lot of patients). An earlier doctor had prescribed a cheaper test, which is more sensitive to the stage of the illness (IgM).

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At this point, i have had the two different chikungunya tests, a dengue test, a malaria test, & a parvovirus b19 test, all of which have come back negative. If malaria had been positive, of course, it would have indicated a very different treatment course than any of the viruses. And it’s good to know if you have dengue rather than a different virus because it is possible you may need a transfusion. But at the patient-level, all the rest of these viruses have a similar ‘treatment’ protocol – fluids, rest & painkillers (plus, as it always seems in Delhi, an antacid to pair with the painkiller).

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There perhaps isn’t much reason, then, to explore which specific virus ails you unless you, like me, find comfort in having a named illness rather than a collection of symptoms that could be named ‘a viral fever.’ (Update 9 Oct 2016: unknown viral fevers in Delhi.)

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And anecdotally, some folks in Delhi seem comfortable just saying that they have ‘a viral’ or ‘a viral fever’  or, intriguingly, that they are going to get tested for dengue to see ‘whether it’s dengue or a viral fever.’ (See also the name of the disease and the work of many anthropologists on this kind of non-specificity vis-a-vis underlying causes.) People also don’t seem a lot of stock in the tests — colleagues and at least one of the doctors i have seen feel like i probably had/have chikungunya, blood work .

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Which raises the question of why i have sought so many different diagnostics (yes, insurance covers it) and why a person might do so more generally. For me, i have both a desire to have a name for my diseases and also a suspicion that a virus doesn’t explain the full story of what has been an extended summer of illnesses rather than a single episode. But for a regular patient paying out-of-pocket, beyond sorting illnesses with different treatment protocols (so, parsing malaria from dengue), being able to pin a particular name to the cause of feeling unwell may not be that important — or, indeed, may be a luxury.

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From a public health perspective, though, lack of clear diagnosis means no numbers to report upward, to understand how illness patterns are changing (including with zika looming on India’s doorstep), when there is a legitimate outbreak, etc. i say that without a complete understanding of how my test results in a private, corporate hospital (some of which were sent to a private path lab in Bombay) make it into any sort of public health statistics at all. The current numbers being reported in Delhi and the surrounds certainly seem too low relative to what doctors off-handedly say they are seeing.

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All of this raises a few questions:

  • During an outbreak, should people satisfied with a diagnosis not based on blood-work (if it looks and walks like chikungunya, it probably is)? Is this sufficiently successful to make up for time and money saved?
  • If diagnosis (sorting between viruses, say) has more public than private benefit (since your treatment won’t change and having ‘a viral fever’ seems satisfactory), should diagnostics be subsidized? How, for whom, etc?
  • Can anyone explain to me whether and how test results from the private sector of clinics and diagnostic centers make it to official numbers? What would need to be done to improve reporting and merging of results into city- or state-wide stats?

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  • Would i be more satisfied with a diagnosis of an unnamed virus in the States? Possibly — it’s certainly happened when down with non-specific ‘flu‘ symptoms that rule out the need to treat with antibiotics. But why am i more comfortable with this?

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:

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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.

with great equipoise comes great responsibility?

i had the pleasure of giving two talks through 3ie seminar series over the past few weeks, in london (chaired by the wonderful daniel philips) and in delhi (chaired by the great stuti tripathi and ably discussed by the always-exciting colin bangay). i was also able to present at the london school of hygiene and tropical medicine — big thanks to catherine goodman and clare chandler for arranging and for great conversation. many thanks to everyone who participated (and everyone has listened about my thesis along the way). [slides for the interested.]

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the presentations were on aspects of my thesis research, which centers on the experience of ‘doing’ the affordable medicines facility-malaria (amfm) in ghana. as often happens, the global narrative around the amfm and the decision to pilot-and-evaluate-and-decide was intriguing and became an important point of discussion. indeed, the pull of the story itself was a major drag on my getting on with aspects of my thesis (with apologies to my committee). what i present below is less about my actual work (relating more to national stakeholders opting in to the pilot and the implementation of it) and focuses on the global narrative, which is abbreviated and stylized in my telling.

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i set aside the precise definition of equipoise that is most relevant in social science and development evaluations –- whether we should be talking about clinical equipoise (or efficacy equipoise?), some flavor of policy equipoise (or (relative) cost-efficiency uncertainty), or even operational equipoise (uncertainty around whether this thing can actually be implemented in this context, let alone produce the intended results).

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rather, i begin with the assumption that meaningful uncertainty is a good starting point for commissioning an evaluation and also possibly a key part of the ethical justification for particular approaches to evaluation, such as random assignment. the former is of more interest to me here.

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an important question – one that the amfm raises pointedly — following from this interest is what obligation, if any, follows from the establishment of equipoise (that a community of thinkers and/or implementers have meaningful uncertainty about a proposed program on a theoretical or practical level).

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let’s look at the amfm. the goal was to make use of existing global and national public and private sector supply chains (from pharmaceutical manufacturers to small pharmaceutical sellers) to dramatically increase access to high-quality antimalarial treatment and, in turn, improve the (appropriate) use of such treatment and reduce the malaria burden.

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this generated a situation of ‘active equipoise’ (read: sometimes heated controversy). some was more ideological: should the private sector be used to deliver public health, for example. i set this aside here. some were practical: if we use this specific mechanism to deliver a health commodity, will the subsidies (‘co-payments’) involved be captured along the supply chain or passed on to the end-user? will people not only obtain the high-quality, recommended anti-malarial treatments once they are made more accessible but use them (appropriately) and finally reduce the malaria burden?

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given this degree of uncertainty about putting a theoretically ‘elegant’ (an oft-used epithet for the amfm) mechanism into practice, a decision was taken to pilot (at national-scale, in 7 countries, for 1.5 years, so the application of the term ‘pilot’ is debatable) and to commission an independent evaluation that would inform the decision to continue, modify, scale, or terminate the initiative. specifically, the global fund agreed to host the initiative for this pilot period and the evaluation was intended to inform the fate of the amfm, at least in the global fund’s portfolio. i am not going to wade into the confusion about the decision was ultimately made (also here) because i want to focus earlier in time than that, about the design of the evaluation itself given its intended decision-informing function.

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note that there were three key points of (less-ideological) debate at the global level that prompted the pilot-evaluate-decide approach, that can plotted down a theory of change and also down a supply chain:

  • implementation feasibility and the possibility of supply-chain capture (and drug adulteration)
  • the translation of access into (appropriate) use
  • the translation of use into reduced malaria burden

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before going on, please note that i am not arguing that all evaluation or research needs to lead to a decision or even have this as a goal. rather, i am asking, once it is determined that we will commission an evaluation to inform our decision -– a pinnacle of evidence-informed decision-making — what are our (researchers, evaluators, funders, decision-makers) obligations (ethical or otherwise)?

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for a variety of reasons, the global fund decided that they wanted the pilot to 1.5 years and, following from this decision, set four benchmarks deemed achievable (through modelling work) within that timeframe that would define success. these related to gains in availability, price, market share (gained against less effective but cheaper and more familiar anti-malarial treatments), and household use. even though the link between use and malaria burden was a key point of uncertainty, this was determined to be beyond the scope of the evaluation from the outset (which people might agree or disagree with). at some point in the process, household surveys were also dropped from the evaluation plan, also cutting off the potential to make rigorous (or, really, any) statements about whether access translated into use.

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a result of this, it seems, is that many global stakeholders have been able to use the results of the independent evaluation (which suggest that at least in 5 of the 7 pilot countries, moderate to high success in access was achieved) to support whatever position they had initially. (the story at the national level seems a bit different: whether because of experiential learning or the evaluation results or path dependency or other factors, many national-level stakeholders seem to have wound up more supportive of the initiative than they were initially –- something which warrants further investigation.)

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a key question is how we should feel about the issue of the evaluation – again, explicitly intended to inform a decision – not being set up to address the key points of controversy. disappointed? angry? ethically outraged (note, to the extent that money and not just principle matters, that this evaluation had a $10 million pricetag and that the overall piloting process rang in around $460 million)? this issue of appropriateness and outrage was a key point of discussion, particularly in the delhi seminar.

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i certainly don’t have an answer but the question merits further debate. if an evaluation is commissioned to address specific points of controversy (uncertainty, equipoise) and explicitly to inform a decision, what are the obligations and responsibilities (whether practical or moral):

  • of the evaluation design to address the controversy (in a way meaningful for those identified as key stakeholders or decision-makers)?
  • to use the evidence generated to make the decision? (and to put in place processes to help make this so)

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for those of us that push for evidence to play a role in decision-making, these seem important questions to debate. i hope we start to.

on reporting processes and details

this is a joint post with urmy shukla.

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in this blog, we advocate the importance of in-depth reporting on implementation processes, evaluation processes, and relevant contextual details of interventions and linked evaluations. this will facilitate research transparency, as well as assessments of both learning and the potential for generalizability beyond the original study setting (learning lessons from ‘there’ for ‘here,’ but not necessarily promoting the strict and exact duplication of a program from one setting to another, in line with an understanding of external validity that is appropriate for the social sciences in development).

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we start with a hypothetical scenario of an intervention and associated evaluation, based on too-frequent experiences in the impact evaluation space. we hope that it doesn’t sound familiar to those of you who have been involved in evaluation or have tried to make sense of evaluation results — but suspect that it will.

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a research team, connected to a larger research and evaluation organization, ran a study on an intervention. for reasons of statistical and political significance, they have deemed it sufficiently successful and worthy of scaling up, at least in a very specific new setting.

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the intervention sought to overcome the following problem, for which there are supply-side and demand-side issues. people in malarious areas may procure a bednet (whether for free or for a positive price), but they do not always follow-through with maintenance (re-treatment or replacement).

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for supply, the private sector only sporadically offers retreatment and replacement, and it is expensive, while the public sector does not always have supplies available. the intervention, therefore, concentrates provision of this service at a specific time and place through temporary service centers.

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for demand, people with nets often don’t understand the need for retreatment and, even if they do, continuously put off doing so. the intervention, therefore, included a non-monetary incentive for which there is local demand (in this case, soap) to be picked up at the time of net retreatment.

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this is, altogether, a relatively straightforward (or ‘technocratic’ in woolcock’s classification) but potentially powerful intervention that can improve the private and public good. as such, researchers in the research organization would like to try this intervention (with associated impact evaluation) in other locations, in which they suspect net retreatment and replacement faces a similar set of challenges.

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however, when the research team in charge of the external replication looked back to the original reports from this experiment, they discovered relatively little information about how the intervention was designed and implemented. the publication is mum on the process itself and any lessons learned, including challenges faced and whether the researchers have done something different with the advantage of 20/20 hindsight. moreover, there aren’t many internal notes that lay out the operations of the intervention or the evaluation. what exists as tacit knowledge remains kept for elite seminar discussions or cathartic gossip over beers.

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this hypothetical raises two key problems: (1) research transparency and (2) the potential for learning and assessing generalizability.

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research transparency: from implementation to data collection

while the current focus of research transparency movements (across and within disciplines) is clear about making data and code available for internal/statistical replication, there is a critical piece missing about process. how was the evaluation run? how was the intervention run? what challenged and enabled the success of an intervention in a particular setting? from the hypothetical scenario, this includes questions such as:

  • who was supposed to organize and run the service centers and who actually did so?
  • did the evaluation put in place any kind of monitoring that would likely to be present if the implementers were acting alone? Should this be properly considered part of the intervention?
  • how was the procurement of soap supply managed and were there any relevant challenges?
  • how was soap determined to be a good incentive in this setting in the first place?

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the research team should ideally be able to refer to a report or working paper, or at least set of internal notes to guide them. but a lack of documentation means that neither evidence users nor even those within the research organization know the answers to these questions. this isn’t just an issue of operations and redundant work, but one of research transparency and ethics: to understand what an intervention actually included, and what is required in order for it to be successful.

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understanding the intricacies of both the implementation and study setting should include both systematic documentation of relevant factors (ideally informed by a theory of change), as well as ensuring that both quantitative and qualitative ‘process’ data are collected with the same rigor as ‘evaluation’ (baseline/endline) data. going beyond a bare-bones theory of change (and including theoretical mechanisms, implementation processes, and contextual interactions) requires extra work. this should, admittedly, fall with both researchers and donors/commissioners — to ensure that study teams have the necessary financial resources, time, and research capacity to effectively and systematically collect and process this information.

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reporting for learning and generalizing

the ‘active ingredients’ of programs (if not whole programs) tested in one setting can also be tried in other settings (other times, geographies, scales, etc). indeed, some may say this is a key goal of policy-relevant evaluations. such trials may be done on a one-off basis or as part of a more systematic approach to external/field replications to learn whether some interventions are indeed effective in a variety of settings.

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neither can be done well if details about how the active ingredients were implemented and measured are not reported. this, in turn, is quite difficult without tools to measure and document processes and decisions made along the way. but this needs to be sorted because reporting on implementation and evaluation experiences and challenges is central to a learning agenda in the social sciences and in programmatic and policy work.

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this argument is not new. lincoln and guba call for “narrative developed about the [setting to allow] judgments about the degree of fit or similarity may be made by others who wish to apply all of part of the findings elsewhere.” it seems that similar concerns motivated woolcock to close his paper on external validity with a call for more case study work. thickness and richness of description, rather than thinness, helps users of evidence learn and make assessments and adjustments in light of their own setting. this description, guided by a good theory of change, can address directly some key challenges to external validity, such as site selection and partner selection biases.

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in sum

failure to prioritize intervention details that track along a detailed theory of change could be potentially detrimental, with ill-advised implementation and/or a locally inappropriate intervention. in the case of the bed-net intervention, failure to report on challenges (e.g., need for extra community buy-in, developing efficient supply chains, clarity about what government workers could not handle alone, etc.), as well as enabling factors (e.g., community-level awareness of proper bed-net usage, the operational strength and local reputation of the implementing partner, etc.), could mean that the research team team conducts a study (and intervention) that, at the least, inefficiently uses both research and implementation resources, and at the most, has negative unintended consequences. ultimately, the conversations that combine research transparency and policy recommendations should prioritize high-quality, systematic, and readily available data from all parts of the impact evaluation cycle.

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our current efforts to be ‘rigorous’ while conducting evaluations are insufficient. we must also be rigorous in our efforts to document evaluation and implement processes, to report on these, and to critically and openly reflect on how we might approach the same problem differently in the future. this level of transparency, though initially daunting, will only improve the potential for better-informed and better-implemented policies, aiding us in transferring lessons from ‘here’ to ‘there’.