G. Partners Telemedicine
The members of Partners Telemedicine have been given pseudonyms
I chose the Partners Telemedicine Center (PTC) because it was the only official telemedicine program in the Boston. Without a doubt there were countless other more accomplished research programs in various stages of offialdom, or disrepair, and numberless individuals with stated interests in telemedicine. On top of that there is a strong and well-known Medical Informatics community that spanned MIT, Partners, NEMC, Childrens, Beth Israel, BU, and often intersects with researchers and programs called telemedicine. Managed Care companies, insurance companies were an option, though generally impenetrable and but a few of the handful of independent companies specializing in radiology, networking, or software had stated interests in telemedicine or internet healthcare. Nonetheless, it seemed obvious, if not wise, to go with the site that had signs of permanence, a place to dwell, staff to pester and a connection to one of the largest and most well known teaching hospitals in the world. That, and it was really close to my apartment. My initial investigations had bypassed Partners Telemedicine, primarily because they had a pathetic and broken online presence, a poor indication of the technical innovations I was in search of. I called, set up an appointment with Paul Kilborn, the corporate director, and was well received, and with enthusiasm.
I met with Dr, Kilborn for the first time in November of 1997, at his office in the Partners Telemedicine Center. The first surprise was the location: the mezzanine level of a residential tower on the far edge of the MGH campus. Walking through the lobby of the apartment building, past the laundromat or the entrance to the swimming pool, up the stairs to the door with a tiny buzzer and a label that said Partners Telemedicne. No other signs of the hospital were present. Of course, space is tight in the center of Boston, and even more so at MGH, which has been built over, grafted onto, oddly extended to become a comic visual diorama of twentieth century building styles: nineteenth century neo-classical, art-deco, 80's corporate, parking-grarage chic etc. The Partners Telemedicine Center offices therefore seemed like an extension of this making-do with space. This strange urban-surburban isolation contrasted starkly with a set of other offices located at the very center of the main building, with prominent sinage that directed the tour groups and corporate benefactors to the pulsing heart of MGH's high-tech international presence. This smaller set of offices housed two Telemedicine employees (Karin Kiley and Walter Terner) and was shared with the MGH international patient center, the organizing office for patients from around the world.
Despite my vague proposal, Dr. Kilborn seemed genuinely excited about having an anthropologist look at the projects they proposed. He insisted that I talk to people at WorldCare Inc. (about whom I had heard from Sean and Adrian, both of whom had worked there in various capacities before it became WorldCare), and the corporate managers Janine Porter and Walter Terner. He proceeded to fill me in on the work that Partners Telemedicine was currently engaged in. In retrospect, surprise two should have been the stream of buzzwords that he used to describe the projects he was involved in: sharing information, exporting expertise, integrated delivery enterprise (sometimes, environment-IDE), asynchronous monitoring, adding value in a capitated environment, remote care management, add-ons, plug-ins, direct links, plain-old telephones, pop-up companies, work-flow interface, desktop videocon links, outcome/cost ratios, hi-res realtime images, value per dollar. Note that none of these words are medical terms, or even medical buzzwords, which was an early indication of the degree to which Dr. Kilborn, and PTC fashioned themselves as technical and business savvy members of the Partners "Integrated Delivery Enterprise," rather than doctors with specific medical goals to solve.
Dr. Kilborn explained the basic activities of the Telemedicine Center:
1.Under the label of "Exporting Expertise" went the ongoing efforts to link hospitals in other countries with MGH. This end of the busisness was associated primarily with WorldCare(tm) and the legacy of telemedicine and teleradiology efforts that MGH had begun in the late 80s and early 90s in the middle east (principally the oil-rich nations)[1]. Kilborn explained that they had performed 415 remote second opinions in the previous year, sure to increase as the number of participating physicians went up. A primary goal of PTC in this endeavor was, as Janine Porter would repeatedly tell me, to "excite the stakeholders of this institution" about the possible revenue streams that existed around the world. By stakeholders, she meant the various disciplines and subdisciplines of the hospital, such as dermatology, cardiology or pediatrics, not the "stakeholders" of Partners Healthcare Inc. in the sense opposed to "shareholders" as entities outside of the hospital.
2.Three local 'research projects' were underway. The goal of these projects was a clinical trial and a published paper that indicated a good outcome/cost ration for the IDE.
a. The first of these was the Congestive Heart Failure (CHF) project. The justification goes: elderly CHF patients are costly because of the number of emergency room visits that they make. There are not enough nurses to perform all of the home visits that would be necessary to make sure these patients avoided coming to the emergency room if it wasn't necessary. Several CHF patients will be part of study in which they will have a small "Windows CE powered device" in their home, which will measure their vital signs. The purpose of measuring these signs is as an indicator of CHF that might necessitate a hospital visit. If the number of hospital visits can be reduced, money will be saved. Though well-conceived, the project met with a wide array of problems and was in a state of limbo when I left.
b. The second clinical trial was a Vascular Wound Care treatment program in which home-care nurses were issued lap-top computers and hand-held digital cameras that they could used to document the progress of wound healing. This particularly graphic kind of wound necessitated constant care and attention, and often the nurses caring for the patients needed consults with the surgeons to verify progress. The images that the nurses snapped could be stored on a network file system accessible to surgeons so that the nurses and doctors could consult them "asynchronously."
c. The third trial was a teledermatology project that would show that patients visiting primary care physicians in clinics could have pictures taken and consultations made of those pictures rather than coming to Boston for a specialist office visit. The pictures were taken with a digital camera ("a very high tech Nikon E2N digital camera" Kilborn informed me) transfered to a computer, uploaded to a shared hard drive on the Partners IS network. From there it could be downloaded to a specialist's computer on which he would make a diagnosis and recommend treatment, then submit the completed diagnostic form to the same shared disk where, within 24-48 hours, the primary care physician could look at the diagnosis and inform the patient. The two primary care sites for this clinical trial were the Women's health center at MGH, and the Cape Ann Medical Center in Gloucester, MA. The diagnostic accuracy of dermatologists with technology, according to Kilborn, was about equal (under 20% off), and this because dermatologists train on 2D images of skin to begin with. On top of that, the system had a "clear work-flow interface" and was a web-based system (by which he meant that doctors would use a web-browser to look at the images, not that the entire system was based on internet transfer or mail-transfer protocols; also, at the time, according to Kilborn, HCFA proscribed the exchange of medical data over the internet) so that doctors could look at the image and make a simple report back to the physician suggesting either wait, treat, or refer in person.
All of the clinical trials were attempts to "add value in a capitated envirnoment." The fact of this strategy signals the profound legitimacy with which managed care already functioned in this environment [2]. Dr. Kilborn proceeded to tell me a fable about two men on a desert island awaiting a Tsunami: the believer/hedonist and the pragmatist. The beleiver/hedonist spends the last days before destruction partying and basically living under the shadow of death. The pragmatist spends the last days before destruction building a raft. In this parable, the Tsunami is managed care, and in particular, capitated payment systems. According to Kilborn, as large managed care institutions moved towards a capitation model, smaller hospitals and primary care clinics have moved to an "outsourcing" model where they have realized that they "need Partners' expertise." This kind of thinking allowed PTC to experience what they were doing as a kind of altruism, building rafts for the heathen around them who need the help of the large academic medical center. At the same time the 'sink or swim' mentality demanded that everyone engage in the rhetoric of the "difficult realities of business."
3. Three less well defined projects were in the works while I was observing. A remote stroke management project bases on the existence of a new "clot-busting medicine" that was out of clinical trials, but only available at first tier hospitals [3]. The goal was to diagnose those cases that were candidates for this drug using remote videoconferenencing and the Amicas tele-radiology system (this was the first and only mention of them). Again, by "moving these patients appropriately," PTC hoped to save cost. Another project involved putting a high bandwidth proprietary ATM link to Salem that would allow MPEG compressed digital echocardiography images to be sent to an EC Peditrician at MGH. The project was stalled, however, for various reasons that would become clear during my stay as I watched doctors and engineers try to imagine what it would look like.
4. The last set of activities that PTC was involved in, which Dr. Kilborn did not go into, were the video production and video conferencing activities. The video production wing was a two-man operation that produced educational, training, and rehabilitation videos for the hospital. Their output was consistent and they had a windowless office on the twenty third floor of the glass Tower at MGH; I met them once, and almost never saw them. The video conferencing network had been up for about a year, provided mostly for the remote conferencing of Grand Rounds, of which there were several per week (Nursing, Pediatrics, Surgery, Medical, etc.). On occasion, however, I did witness them use this system to provide remote diagnosis to doctors and patients in other countries.
When Dr. Kilborn concluded, he suggested that I meet with Janine Porter, the corporate manager, and June Baylin, the research coordinator to determine how I would go about my work.
My first meeting with Janine Porter provided another surprise. This one is now a familiar experience, and it takes the form, most succinctly, of a misfit of experience. Within the first five minutes of speaking with Janine, it became clear that she expected 1) that I was there to work for them, or at least with them, 2) that (1) should not take the form of making copies or other such busy work (!) and 3) that I needed to formulate hypotheses (which she often called 'tasks' or 'problems') about which solutions I could report back to her. The meeting lasted about six minutes, with my sole contribution being: "Well I can only see what I can do once I get in and observe what's going on, and maybe then I can pinpoint a problem that I can focus on."
Janine immediately "tasked" me to set up meetings with the research assistants and the director of research. Access was as easy as that, even if unease concerning my role made observation, much less participation confusing to everyone.
There are two ways people will react to the statement that I am an anthropologist who wants to study corporations and the role of information and communication technologies in healthcare. 1) "You're an anthropologist? Don't you study old bones?" 2) "That's very interesting." Sarcasm aside, however, it quickly became apparent that the best way of introducing myself was to jettison the anthropological identity and rely on my MIT credentials and some vague story of "research" which left people considerably less bewildered, and not a little less anxious about what I would be doing there.[4]
The absolute devaluation of the notion of research is central to understanding how the boundaries between corporate, academic medical, and university work. The fact that Janine could use "hypothesis" and "task" interchanegeably is the first clue to the nature of this devaluation. Nearly any activity except operating a copier can be called "research." But the idea that I might want to observe people at work, talk to them about "personal" issues, participate in daily activities, or simply hang out without any intention of improving the way things are done seemed pure madness to most. Research, I re-discovered, has one purpose for most people: to improve life, work, health, and happiness.
Squatting on MIT's name produced a different set of problems, however. By the second or third self-introduction, I had cycled through the various possibilities and settled on the introduction that went: "I'm a resercher from MIT, and I'm studying the impact of information and communication technologies on healthcare, especially the use of telemedicine." Occasionally I would add that I was doing this in part under a grant from France Telecom to do a comparative assesment of US and French telemedicine. The problem I now experienced was that the word 'MIT' tended to produce a hearing-deficit in almost anyone who I met, so that whatever I might add after I uttered it simply became details irrelevant to the fact that I was an engineer (which I am not). Nine meetings out of ten ended in someone turing to me and uttering the now familiar staement "Chris, you're from MIT, you must know how to do X? Right?" Most of the time, I did my best to explain that I wasn't there to do X, even if I knew how." To which I inevitably received a blank uncomprehending stare, whose meaning I can only guess at[5].
So this was my environment: in which research is objectively devalued, in which university reputation trumps not only actual skill (which most people are disposed to conceal regardless) but also active disavowals of that skill, and in which my role was more akin to consultant than observer.
Of the three projects that were underway at Partners Telemedicine, the furthest along was a clinical study on the use of teledermatology. As a dermatologist, Dr. Kilborn could get excited about this. The study intended to show that patients visiting primary care physicians in clinics could have pictures taken and consultations made of those pictures rather than coming to Boston for a specialist office visit. The pictures were taken with a digital camera transfered to a computer, uploaded to a shared hard drive on the Partners IS network. From there it could be downloaded to a specialist's computer on which he would make a diagnosis and recommend treatment, then submit the completed diagnostic form to the same shared disk where, within 24-48 hours, the primary care physician could look at the diagnosis and inform the patient. The two primary care sites for this clinical trial were the Women's health center at MGH, and the Cape Ann Medical Center in Gloucester, MA. From both of these sites would come a more or less steady stream of patients that would be "randomly" assigned to one of three dermatologists, one of which was doctor Kilborn (in practice, randomization was more or less superceded by the time-commitment, so that one doctor's failure to diagnose the patients meant another had to pick up the ball.
On day one of the study, a peculiar issue surfaced. When looking at the first patient, Dr. Kilborn was very unhappy with the initial pictures that were taken; not due to quality or resolution, but due to the fact that the images were not "protocol derived," meaning that the PCP hadn't followed instructions when taking the picture so that the angles, lighting, and magnification of the set of images that had been taken wouldn't meet the criteria to be included in the study (and while they anticipated that the study would generate upwards of 500 patients, Dr. Kilborn was very sensitive to the problem of throwing out patients who had agreed to participate in the study. He repeated his phrase to the research coordinator June Baylin: "Please tell this doctor that all images need to be protocol derived."
The rub here is the effect produced by this departure from protocol: Dr. Kilborn couldn't tell what part of the body he was looking at. The profundity of this problem was lost on the participants, who were, quite justifiably more concerned about doing the study right, and getting the PCP to listen to the technician [6]. The absence of a point of reference crystallized the instrumental, realist attitude towards these technologies of representation, recusing and unlabeling itself. Situatedness rises, and the problem of keeping track not just of the patient and his or her history, but of a map of the patient's body as well. The necessity of triangulating a set of photographs with a "protocol" that would ensure the uprightness of a body, and is orientation in another space (Gloucester, MA. in this case) came crashing into a habitual, embodied knowedledge that never would have dreamed of such a problem. Needless to say, all subsequent photographs were "protocol-derived" and the problem never showed up on my radar screen again.
A meeting to discuss the first few days of the teledermatology project. It is here that I learn that none of the technology involved in this project has been designed or built at the Partners Telemedicine Center. Present are two representatives of a small startup company called Global Telemedix Inc. who have been contracted to build, maintain and support the teledermatology system. It turns out there is little security, since Kilborn noticed that he could view the pictures from home, as could anyone at a public workstation in the hospital. An issue of perrenial shrugs. Security is something everyone is deathly afraid of, but no one has any real ideas about. Security at Partners, like all aspects of the network is handled by Partners IS, a molasses like substance with tremendous inertial force. Concern over security takes two forms: 1) concern about medical data traveling "on the internet" (which, note, it was not, because the network was an internal Microsoft-based NT network), during which travels "anyone" might be able to look at it; and 2) the assertion over against (1) that the better part of the security problem rests inside the walls of the organization, and not outside. During my tenure I heard many concerns over security, many assertions that security was taken care of, but no specificity about either the concerns or the solutions. However, as with all agenda items during this meeting, the representatives of Global Telemedix are vague and appear generally unhappy to be there. From what I can tell, they are developing a technology called "Tele-Consultant" that they will eventually commercialize. Partners is thus a test for them, and an unsuccessful one, it appears, given the complaints: that the image viewer is too basic, doesn't provide annotation, that the buttons are on the wrong sections of the page, all the tools are in different formats and in different databases, that Internet Explorer crashes all the time (surprise!), that modem connections from home are slow, JPEG image sizes are too large. None of these are issues that Global Telemedix really has any control over, and it is the first example of many of a repeated experience of doctors and nurses asking the impossible of technology that they are struggling to understand. It is as if the successes of the past had so inflated expectations that the future became a graphic asymptotic modernity in which anything is possible.
Related to these frustrated expectations is an issue that Kilborn continues to encypher as "ubiquity." At least three times during the meeting, the word comes up, referring as much to the ubiquity of dermatological conditions in the population as to the presence of PCs on desktops. Part of the excitement of this atmosphere is the sensation that the "research" they do will be somehow exported to the rest of the world. There is a strong sense that this is the center, even though the technologies and ideas they pursue are no more central and no more exportable than research conducted at a hundred other academic medical centers around the country and the world. Ubiquity is therefore a code-word for a kind of political willfulness about the inevitablity of progress, in this particular case, of the internet and telemedicine and an assertion of their participation in it. Ubiquity is the sign of not simply success, but sameness, the success of standardization that will make the problems of cost-cutting and managed care disappear. The imagination that permits ubiquity to stand in for the realities of political and/or economic power is the same one that makes statements like 'What will Be" (Dertouzos), "The Road Ahead" (Gates), the countless futurological promises of journalists and internet pundits and the everyday vernacular version in which people continuously assert some version of "the internet changes everything, it is inevitable." It's the Tsunami story internalized, encapsulated in the word 'ubiquity.' In this particular case, its portrayed as a technical issue. Kilborn says: "I'm just thinking about ubiquity, will the image viewer be freely available?" Or,"the ubiquity of images means that they will need to be highly compressed." Non-sequiturs are the brain-children of buzzwords and technical terms.
The fact that basically the entire project was outsourced to Global Telemedix leaves Partners in charge only of the clinical trial, largely unable to compensate for the technical problems that might interfere— such as the fact that Cape Ann's computers are too old to have Windows 97 (Perhaps this referred to Office 97, it is unclear) installed on them, so they cannot perform the "doctor-use feasability study" which is apparently in a Microsoft Access Database that runs only on this new software, an irony for an organization that finds itself technically, perpetually behind itself with respect to computer infrastructure. But absent these issues, the project would still not be without hurdles. Confrontational and otherwise uncooperative doctors at the Cape Ann medical center threaten to disrupt the trial. One of the staff members explains that they have gotten most of their patients to date (6 to 7) from MGH and only 2 from Cape Ann, because they are "forgetting" to offer it to potential patients. There is smoe discussion about the mystery of why one group would be so excited about the project while another would not. Kilborn offers "I characterized this project as 'early-beta testing' to both groups. If [Cape Ann] is angry about that, then they don't understand the spirit of participation. This is a culture change, they will have to get used to doing this."
"Culture Change" is a phrase that reappears regularly. Pause to dwell on this usage, because it will be imporant to the some of the arguments in this dissertation. As with much of corporate America in the eighties and nineties, 'culture' has become a commonly used term to reference the norms, tacit and otherwise, that permeate an institution. These norms can be good or bad, managers can leverge them to make employees feel more "at home" or leverage them as a kind of marketing tool[7]. At partners, the 'culture' had come, among other things to reference the historical organizational differences between BWH and MGH, which had recently become part of the same corporate entity. Janine Porter and June Baylin both recognized and complained of these differences. Janine explained that she saw BWH as having a culture of authority and inflexibility, and MGH as having a culture of collaboration and intellectual integrity, and that these two things conflicted often; BWH usually "won" because "they just refuse to do it any way but their own. June Baylin had worked at BWH: "22 years with some of the toughest chiefs at BWH. People are intimidated by my resume." She had just recently moved (with Janine) to Telemedicine, and within the year had decided to leave, because, she explained, she saw how much independent consultants to PTC were making, and how little she was making, and decided she could be a consultant instead. Her reaction to the merger is a telling instance of this change from career-oriented "culture" to a "culture" or casulaized consulting: "When I was at BWH I knew it by names, faces, places, ffunctions and responsibilities. Partners Healthcare System is just three words that flash across my brain. I have no idea what they mean." Whether explicit or not, every mention of "culture-change" referenced something that was unarticulated, only understood at the level of frustration. During a meeting on the creation of a Center for Clinical Telemedicine at BWH, members of PTC expressed frustration with the people positioned to make decisions (e.g. "Dr. W is an asshole, he only wants to know where the money is coming from"), Dr. Kilborn and Janine Porter complained that they don't understand the nature of the "culture change" that they are trying to effect.
Often "culture change" in business has meant the switch to flexible production, modifiable work-groups, what Charles Sabel calls "Learning by Monitoring" and, as a result, general career insecurity. "Culture change" in medicine references the same things, but misunderstands them as a change to a "business" model, as if the business world had not also changed. The executive directors, in particular, were adamant to the point of madness about this. With the fanatacism of converts, they insisted on business priniciples over against any kind of traditional, paternalistic or welfare-oriented principles of the hospital. This was indeed "culture change."
The "town meeting" was the first time I saw all of the members of Partners Telemedicine together. It was also my first introduction to their intense focus on the management of resources and attempts to sell themselves to corporations. In retrospect, this meeting represented a focus and critical mass of energy that I never saw repeated in the subsequent fragmentation of the Partners Telemedicine Center. Dr. Kilborn's report to the staff consisted of 'goals' and 'strategies'. Under goals he offered 'business goals', 'operational goals,' and 'academic goals.' Under strategies, 'Fund-raising,' 'technology,'remote consultation,' and remote education.
The general goals, titled "Three year goals" (incidentally, an unimaginable time-line compared to the internet start-up world) included the following:
1) Demonstrate the utility of telemedicine as a tool for the distribution of Partners knowledge to patients and providers internally and globally.
2) Demonstrate a sound business case for telemedicine,
3) Enhance awareness of telemedicine and its potential among the professional and lay public.
The hopeless generality of the goals is key to the general sense of either excitement or confusion that suffused this environment. Excitement for the individuals whose day to day activities were stretched to the breaking point (the three members who ran the video-conferencing were working ten to twelve hour days running all over the greater metro area setting up video-conferencing calls and providing support to individuals who used the system. One member confided at one point that he honestly thought that he could drive around town and pick up all the people who were going to meet via video, bring them to one place for a meeting and then return them, and he would probably be doing less work), but confusion for the rest, many of whom were hard pressed to say what telemedicine is, was, or could be.Dr. Kilborn storied these goals:
Even in the cases where goals were clearly labeled 'academic' the language surrounding them included 'business plans' 'cost effectiveness', 'technology planning' and 'management strategy.' Locating the surprise in this is difficult. On the one hand, it shouldn't surprise that medicine is a business, and that academic medical centers are the most agressive in this industry. On the other, it is quite significant that, as these stories should indicate, the people who work in telemedicine were drawn to these jobs because it offered something other than the crass callousness of the business world, or in the oft-repeated phrase: "I feel like I'm helping people here." Over the months I observed the telemedicine center, more and more people indicated frustration with the language of "increasing access and decreasing costs" both because it wasn't what they came to do, but also because it felt like a relatively meaningless Mantra. The vagueness of the goals and strategies— goals like "enhance revenue streams" and strategies such as "target large corporations that may have an interest in funding research in an emerging industry,"— also served confusion for the staff, while leaving the directors roles undefined.
Goals and strategy aside, however, the meeting did eventually turn to more concrete problems. Financial problems concerning short term purchases, growing expense debts, last minute purchase decisions, professional association fees etc. These concerns, which centered largely around the videoconfernecing activities, since they appeared to be the sole activties increasing in scale and scope. The stock answer was that budgets were tight, that Partners could not fund us at the current "burn rate," and that the main issue was to complete the tasks that needed to be completed. Space was also raised as a concern, and the promise of new office space seemed to be forthcoming.
At this point in the meeting, it was Janine Porter's turn to "address the team members about being part of the team." In what would be the first of several examples of a kind of infantalizing management dribble, she began by insisting that "flexible time is part of your career, but it is not an everyday occurence." This coded chastisement for being late to work, I later learned, was precipitated by one person in particular, but Janine saw fit to insist on it to the entire staff. She continued, "just because we might not need to be doing something in the office, doesn't mean that other people don't need us. Meetings need to start when they need to start and we, as a team, need to make a commitment to that so that we can grow in various ways." The spiraling vagueness of this first person plural reprimand appeared to be improvised based on the Janine's reaction to the facial expressions of the staff. As she reached the nadir of her speech she appeared to suddenly decide "that each of us take our job descriptions, look at the tasks that are listed there, and make sure that they are tasks that we need to be doing. Also make sure that we add any tasks that you do that are not listed there. By March 15th I would like new job descriptions from each of you, listing these tasks, which tasks need education, where you would like to go in the future, and jobs can be done that currently aren't. I will also make a commitment to do a new report on employee development."
I was a bit shocked by this, mostly because it felt so much like high school, but also because I couldn't figure out what she wanted, yet no one seemed to be asking any questions about it. Either I was missing something in the shallow management rhetoric, or the staff intended to ignore this woman's request as soon as they stood up. The latter turned out to be closer to the mark. As the meeting ended, I was left wondering how many people at PTC had a firm sense of what they were supposed to go do right then.
I settled in to a routine of meeting with two people in the research wing of PTC, Michael Carpenter and Rob Prasad. Michael and Rob were both young men working as Research Assistants on the three Clinical Trials that were being conducted. Rob was principally responsible for designing and runnig the Vascular Surgery project, Michael was overseeing the CHF project. Both were good-humored without reserve, and both had entered the job under the assumption that it would be challenging and good resume material. Michael planned on going to Medical School, Rob either to medical school or to business school. Rob spent most of his time teaching himself new development tools for building and managing websites. PTC would occasionally send him to classes, and he would pick the brains of the Global Telemedix people who came by to update of fix the systems that had been hired to build. After a year and a half, Rob was ready to move on to an internet healthcare startup.
Michael, on the other hand, was pinned beneath the CHF research project. He referred to it as the Mammoth in a tar pit project. His experience of this project was colored both by its poor design and by the bathos of management. Michael's uphill struggle against the project and the people around him was the very last thing that I came intending to observe, but the most intense and fascinating. The CHF clinical trial was designed by PTC staff, but the technology had been built primarily by Global Telemedix. The device they designed was based around a hand-held Hewlitt-Packard computer ('palmtop') running the 'stripped down' Windows operating system Windows CE. They had inserted this computer into a box that was about 10 times its size, about the size and shape of a toaster oven (or more accurately, the size and shape of an Atari 2600). The palmtop was hooked to a series of devices: a sphhygmomanometer, a pulse-oximeter, and a scale. The keypad of the palmtop was covered with a metal plate so that the only interface was a touch-screen [8]. The system also used a modem to dial into a server and download the measurments into a database. They built approximately 20 of these devices to be put into selected patient's homes for the trial.
The protocol for the study required measurments of each of four 'CHF triggers'. The triggers were weight gain or loss, pulse, blood pressure, and blood oxygen level. I significant change in any one of these factors was enough to alert a nurse that a visit might be necessary. For the purposes of the study, these four triggers were each measured three times: first by a nurse, manually, without the use of the device, second by a nurse operating the device, third by the patient operating the device him or herself, but with a nurse present. This seemingly straightforward protocol produced a series of "alarming" correlations. Michael sent out a memo.
The alarm came as a result of the fact that the correllation of the measurements of blood pressure and weight taken by nurse, nurse with device, and patient with device were so different as to suggest some kind of malfunction. Any number of issues were suggested: Nurses were helping the patient with machine, nurses were not helping the patient with the machine, Nurses were using "non-calibrated" home scales to measure weight, 'natural' variation in blood pressure over short periods of time, patients were experiencing "white-coat hypertension" [9], patients were small and frail, so accurate measuements were more difficult (in some cases, normal BP cuffs were replaced by pediatric cuffs to attempt to remedy this problem). It was even suggested that Nurses were sabotaging the project because they were involved in a clinical trial with a competing home care company. Rob returned from a meeting with Dr. Kilborn and June Baylin with the suggestion that Michael recorrelate all the values in order to see if any particular patient or nurse were throwing the numbers off. Michael was concerned that the nurses were responsible because no one could watch them, and because they had no real incentive to participate in the study.
Some time in the middle of this fiasco of measurement, June Baylin officially left, to be replaced by Dr. Anne Edwards. Michael had managed to clean up some of the data to recover a few transcription errors, but the data was still so bad as to be unpublishable. At one point they decided to run a mini-trial to determine if the CHF device was measuring blood pressure correctly. This ad-hoc protocol, as far as I could tell, consisted of making one of the secretaries wander wround the office taking people's blood pressure with an ancient sphygmomanometer attached to a metal stand with wheels, and then again with the device. In my case, she took my blood pressure with the cuff, but not with the device. I asked Michael and Rob why she had neglected the protocol, they shrugged. Clearly they were not taking this so seriously any longer.
About a month later, a single meeting occurred in which a set of people from other parts of MGH try to involve PTC in a CHF project with great potential. Apparently, the Tufts Health plan is trying to get a registry of its CHF patients together so that MGH can treat all of them. One of the meeting participants explains that these patients are "hemorrhaging money" and that the potential for cost savings is enourmous. Dr. Kilborn, Anne and Michael try to present the CHF project as something still under investigation, unfinished, "the data hasn't been thoroughly analyzed yet." Dr. Kilborn tries to interest them in "phase 2" in which he claims they will move to a WebTV set-top box for CHF patients to use. This is the first I have heard of this, and it turns out, the first Michael or Anne had heard of it. Nothing comes of the meeting and the project recedes further into the past.
During this time, I was more likely to witness a kind of organizational and management auto-immune response than any actual research work. Anne, having just arrived, in the middle of this project, was the most confused and frustrated. She knew less than I did, and was having as much trouble getting people to fill her in. During an informal meetin with Michael and Rob, she had asked Michael for information about the organizational structure of PTC. Michael offered to get the official organization chart and asked Dr. Kilborn's secretary, who agreed to print them out for Michael to take back to Anne. Dr. Kilborn overheard this request and for some reason decided to ask Janine why Michael would need the organization charts. Janine having no idea, asked Martha to go and ask Michael why he needed them. Michael, however, sensed that Martha was asking for someone, and when he managed to get her to admit that it was Janine, chastised Martha for doing Janine's dirty work. Martha later apologized, but said that Janine still needed to know before she could print out the reports. So the meeting on organizational structure was postponed, Anne was left only with my vague and incomplete description of the organizational structure, with Michael filling in details that he knew.
Also during this time, Michael had been working on getting a proposal through to start a research project that would use telemedicine to care for AIDS patients in their homes. He had worked hard on the project, and clearly cared deeply about it. When the budget was presented to Partners, however, it was not accepted. Since Michael was not present at the budget proposal meeting, he was disposed to imagine all manner of reasons for its non-acceptance. I caught him in a particularly bitter mood just afterwares, when he insisted that these were the worst conditions of management he had ever worked under. "It's like they're playing house and one says, 'Now I'm the daddy and I say its going to be like this,' and another says, 'No I'm the momy and I say its going to be like this!' Never before have I seen it like this, not in the service industry, not in law firms, but these people are so full of corporate jargon that means nothing that I have no idea what they are talking about, they just wander around making things difficult." As if in illustration, Anne peeks in and asks where Rob is, and Michael says he's coming in a half hour late. Janine overhears this, and within earshot of Michael says "In the futuer, Anne, have your employees call you when they will be late, and then you should call me so that we can know where everyone is." I raise my eyebrows, and Michael says "I call this the 'downtown Burger King approach to management," he mocks: "You betta call yo managah, you gonna git in trouuuble." And then again: "I wan' you ta pinch-hit on the fry-station today, Jason's fixin to git fired!"
All of this met its apotheosis in Michael's "performance evaluation." Written by June Baylin, after her departure, and presented by Janine in a meeting, the evaluation shocked Rob and I with its harshness. Personal issues that had hitherto been tacit between June and Michael, foremostly concerning sexuality and religion, where just barely contained beneath the surface. Michael was blamed for the failure of the CHF project and saddled with every disruptive trait in the book. Even from my brief and inevitably biased observations of the situation, the evalutation (upon which rested a letter of recommendation for Michael's application to Med school) was blatantly vindictive. The CHF project was abandoned, and Michael stuck it out for six more months, ironically outlasting June, Rob and Janine, before he went on to med school.
Julianna Lee and Tim O'Neil invited me to observe a teleconsultation that they were performing with Tel Aviv, Israel. The Partners Telemedicine Center, largely because of the skill and effort of Tim O'Neil, had managed to install 21 Video Conferencing units (at a cost of somewhere around $1 million) at sites throughout the Partners network. These units are made by Vtel, a company specializing in the video conferencing hardware. They normally consist of two 32 inch televisions, a PC, a remote control video camera, a hardware codec, a video cassette recorder, a pen and keyboard based infrared input system, and software for communications, compression, and integration with the VCR and camera. These systems are widely sold, and they are built to comply primarily with ITU standards, but are nonetheless a perfect example of a proprietary technology, like VCR's themselves, that have found sudden competition (though not intense, due to quality issues, see "Scale and Convention") from the internet.
The system is impressive, especially if it isn't on, its mysterious power obscure. The two televisions sit side by side, an odd sight to begin with. On top is a small video camera that is operated by the 'expert', in this case Tim. The VCR and PC are generally obscured underneath in a cabinet that gives it the false bottom of a home entertainment center. I like to imagine a variety of home recordings of consultations and surgeries stored underneath, unlabeled, in disarray. When the system is on, disorientation takes over. When there is no connection to a remote site, both monitors show the room that the system is in— the view from the video camera on top of the TV's. TVs showing you in stereoscopic vision what they see. Dial a remote site, however, and one of the TV's switches to the view from the remote system. Side by side, are television images of the interlocutors: one, the person on the far end, the other, yourself, staring back at you in the frame next to the person you speak to. It almost seems appropriate to turn the televisions to face each other.
On this day, a consultation was scheduled between the Ezra Lemarpeh Medical Center in Tel Aviv and the Chief of Cardiac Surgery at Brigham and Women's Hospital, Lawrence Cohn, MD. The consult was scheduled for 8am EST (3pm in Tel Aviv) and I arrived at about 7:30am. The room at BWH was a large auditorium, and when I entered I noticed that the camera was zoomed out to the point where most of the room was visible on screen. I wanted to remain off-screen, a camera shy newbie, and installed myself in a far corner a few rows back, just off of the left side of the screen. Tim proceeded to dial the telephone number of the remote site in Tel Aviv, to ensure that the connection was working and to test any equipment before the consultation. On the screen appeared a series of instruction, a series of noises, and then the screen focused on a small room with a table and three men. Tim says 'Shalom,' then 'hello,' then repeats 'hello.' From the far end, we hear "yes, we hear you" and a wave. The picture looks very clear, two of the men sit at the table, the other leans against the wall. One wears a Rabbi's attire, the other a business suit. The man against the wall appears to be in vaguely orthodox dress, though he also appears to be sleeping, and is hunched over. I wonder if this is the patient, but later learn that the patient is not present. On the other screen Tim is clearly visible, standing next to his laptop, and holding the pen-based input baord. There is only a 1/2 second delay in the audio (it is a 384 Kb/s connection). Tim introduces himself and begins small talk about the weather. They ask if he is will go to Florida where the weather is nice, and Tim laughs. It is February in Boston, and he suggests that if the room had windows he would show them the snow outside.
Conversation slows, though it is only about 7:50. There is a pause, and then they ask about the room, which they can see. Tim explains that it is a conference room, usually used for large gatherings. With its typical ostentations mahgony excess, it is a stark contrast to the small white room they occupy, the rear wall of which hangs a slightly off-center banner that reads "Ezra Lemarpeh." Tim zooms the camera out to show them. I am mesmerized by this interchange of virtual exploration. Mesmerized until the camera swings left and settles directly on me.
The man dressed like a Rabbi smiles, waves and says "Hello." Startled I return the hello. After a pause he says "What's your name?" "Chris Kelty. I'm an anthropologist studying science and telemedicine," I realize that across distance and language this probably isn't clear, so I add "I'm here to observe and see how this stuff works." But as I'm saying it, the delay too long for normal phatic interaction, he responds to my first statement: "Oh, an anthropologist" he says, hardening the G, "what do you think about the Big Bang and the Origin of the World?" Or rather, I think this is what he said. I look back at him, and I say "not that kind of anthropology," wondering what kind he is talking about, or for that matter, what I was thinking about. He was persistent though, still smiling: "Do you believe in the scientists?" "Excuse me," I say. "The scientists, do you believe in the scientists?" I look at Tim for guidance, he says "He asked if you believe in the scientists." No help there, so I say "I'm not sure I understand." "Well, he says, if you study the anthropologia, and the origins, then you must believe in the scientists' words, no?"
At this point, some clarity dawns on me: he wants to know what I think about the scientific origin stories, evolution, creation, etc. But as I start to formulate my thoughts, in come the doctors, and I simply say "Yes." He smiles again, gentle and broad and says, "very nice to talk to you."
Dr Cohn arrived with several colleagues, an expert Cardiogram reader, and a coordinating nurse. It appeared that the Rabbi had spoken with Cohn the day before and they had arranged this consultation. They exchange greetings, Dr Cohn introduces each of the people who is with him. On the far end, the Rabbi and the suited gentleman, who turns out to be the doctor, change places and the doctor begins to give the patient's history. Israel K. was a 45 year old man with a history of rheumatic fever, who had undergone an aortic valve replacement in Belgium, and had recently suffered an embolism, been put on antibiotics and responded in 24 hours. He was then put on successive courses of antibiotic treatment for eleven and then fourteen days. He was asymptomatic, and nonseptic. They then explained that they had an echocardiogram to play.
Given the slow speed of the connection the inherent fuzziness of sonography this seemed an impossible task. And indeed, when it began to play, the screen filled up with an amorphous mass of static that seemed to pulsate like a heart, but just barely. Nonetheless, the cardiogram reader who had accompanied Dr. Cohn, immediately pointed to a piece of static and said "Looks like there's some vegetation here, on this valve, see it, here," she pointed at the static again and the others nodded agreement. She surmised that it was probably that 'vegetation' that had embolized to the index finger. There was some discussion about the course of antibiotics, and almost immediately Dr. Cohn suggested that they wait and see, keep the patient under supervision to make sure he does not 'go septic.' "We can repair this," he says matter of factly, "But the question is, should we?" In the end they suggested 4-6 weeks, a complete course of antibiotics waiting and watching to make sure there is (and I love this phrase) "cultural negativity."
Dr. Cohn very proffesionally asks the doctor "What do you think?"
"Well, Yes, we agree."
"Good. Then I suppose we need to talk about payment now." Dr. Cohn switches modes quickly, and on the far end, the Dr. begins to look uncomfortable. He stands up and again changes places with the Rabbi. Dr Cohn turns to his colleagues, loud enough for everyone to hear, but as if the video camera would not see, and says, "this is where the doctor steps out and the businessman takes over." It is unclear whether the folks in Tel Aviv hear this crack, but it produces some titters in the room. It is also unclear why— perhaps it is ironic that the man in the business suit is the doctor, while the rabbi is the businessman, or perhaps it is taken for granted that doctors in America handle their own business matters. In any case, at this point it becomes apparent that the Rabbi and Dr. Cohn have previously agreed to bring the patient to the US, even though their recommendation is simply to watch and wait. Dr. Cohn first asked what they had paid in other situations and then refers to a "Global Pricing Structure at BWH" (which, after much asking, turned out not to exist anywhere, and had shocked both Tim and Julianna). The Rabbi explained that this patient was not insured and would be a self-pay, so they would like to have the maximum discount available. Dr. Cohn says that it should cost about $30-$32,000 dollars including all fees, but that this is an unusual case in that there is the risk of re-operation. The Rabbi asked about waiting 2 weeks before bringing him over, and all were agreed that this was fine, and that bringing him in to the outpatient care center here would be the safest for the patient.
There were goodbyes all around, some consultation, and then sign off.
All in all, I saw around six of these consultations with foreign doctors. With each one, it became less glamorous for the doctors on this end, and more apparent that the doctors and patients on the business end represented a particular segment of the world population— the very rich. This was perhaps, the least surprising aspect of my time with PTC, seeing as how the MGH and BWH have long histories of treating high profile individuals from around the world. In the six months I was daily at MGH or BWH, three foreign dignitaries came to see the Telemedicine center: King Faisel of Saudi Arabia, Prince Andrew from England, Chief Minister Naidu of Andhra Pradesh, India. All of these choreographed visits intended to give a sense of the Telemedicine Center as an international presence in the world of information technology in Medicine. The case of Naidu was particularly interesting. His entourage had been visiting major IT companies in the US and abroad in order to make deals of various unspecified kinds with the state of Andrah Pradesh. Naidu styles himself, and is recognized, as the Minister of Information technology, bringing the power of IT to the people of Andhra Pradesh. PTC saw an opportunity in this, and coordinated presentations from Dr. Kilborn, Dr. Thrall, Walter Terner, and Rob Prasad. At the same time, the Indian Delegation appeared to give their own ad hoc presentation, during the question period, of the virtues of investing in Andhra Pradesh. By the end of the meeting, no one was asking questions, but each was selling itself to the other. In the end, no deals were made, no money moved.
All of these served to give me a very palpable sense that a great deal of international collaboration, cooperation was sought, but that every boat was missed by the large inertial Partners. The fact of MGH's international recognizability, especially its connection to Harvard, was squandered in every case. And while it should be surprising or worrying that such an international market in patient care has emerged, it was not at Partners that the bulk of this activity occurred.
Teledermatology
2/4/98
2/25/98 "Town Meeting"
"Patients love the stuff, because it means less time spent and more access to care. I've spoken a great deal about this with [members of the international patient center] and we have decided it is necessary to clarify our vision statement in order to create an international business based on this. Telemedicine has a very high premium for specialists and providers, especially teledermatology, but demonstrating a sound business case here is more difficult. When you are increasing efficiency but at the same time adding technology costs, that's a hard sell. It's very difficult to overcome. Our vascular project will probably result in the nurses buying the cameras, because they are relatively inexpensive and they see the value added. In the Telederm project, there is the question of who pays; either 1) the PCP will pay because it saves him referral costs or 2) dermatology specialists will pay because it definitely increases revenue streams, there is a high premium for them. Now on the subject of enhancing awareness of telemedicine among the lay public, our penetration of lay knowledge is very bad. The popular press has a tendency to do a story once every six months where they say "robots will replace doctors" and that doesn't help us very much. Part of the problem is that they always want to see a doctor WITH a patient, and we can't really do that. If anyone has any ideas on this please relay them to Eric."
CHF, Michael, Rob and Management Bathos
Watching TV with Important Doctors
2/26/98 Catherine Hall Lecture Room, Brigham and Women's Hospital
Last Modified 11-Sep-99 9:22 PM ckelty@mit.edu
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