At the completion of this section of the course, a student should be able to:
The following content has been based verbatim on excerpts from
Chapter 2 of
Bringing Health Care Online: the Role of Information Technologies.
U.S. Congress. Office of Technology Assessment
The story begins with a glimpse of the imagined mainland: the following scenario illustrates some of the many ways that health care might be different should information technology achieve its full potential as a medical tool. The scenario is fictional, but not utopian: it explores how the experiences of consumers, clinical teams, administrators, and policymakers might change in a world where health information flows freely. It implicitly illustrates some of the problematic aspects of the digital revolution in health care, along with the many possible opportunities and advantages. In the scenario, information "flows freely" in that structural and technological impediments to exchanging information have been minimized, but it only flows within prescribed channels. This qualification will need to be applied to any comprehensive health data system that might develop. There must be adequate security and confidentiality mechanisms in place so that all participants are willing to trust the system and put their information into it. In addition, the legal, regulatory, and technological standards that define the channels must be stable and rational enough for businesses and institutions to depend on them. Consider, then, a fictional scenario of health care in a fully digital world.
The scenario is presented in four sections:
Through out the scenario, keep in mind if you could organize the care better.
Emilia finished her reply to the clinics e-mail message and launched her web browser. The e-mail had been a reminder confirming her appointment later that day at the maternity clinic at the medical school; with only a month remaining until her due date, she was well acquainted with the routine of arriving at the clinic, having the nurse practitioner check the babys size and heart-beat, and returning home with a fresh stock of vitamins and increasingly real expectations for the future. Emilia chose the medical schools home page from her browsers list of recently visited sites and typed her name and password into the scheduling inquiry form. In a moment, the response to her query appeared: appointments in the maternity clinic were running about 20 minutes late. She had plenty of time for lunch before the visit.
For the past few years, Emilia had received primary health care through the student health service at her college, but when she became pregnant all that changed. She was referred to the maternity clinic at a teaching hospital associated with the university and had received all her prenatal visits and screening there. From her first visit, it had been apparent that things were done differently at the hospital than at any doctors office or clinic she had visited.
Emilia and her husband John had arrived well before their scheduled appointment, expecting to have to complete a pile of paper forms. Instead, they were directed to one of a set of kiosks in the reception area where they sat down and began interacting with a computer program. The computer asked Emilia to swipe the magnetic-stripe card from the student health service through the reader next to the machine, and then the machine began asking them questions. Most of the questions were the usual ones"Do you have a history of heart trouble?" for examplebut at least she didnt have to fill out all those tedious addressesher own, her next of kin, and the like.
The computer had already read them from the magnetic card. It took only five minutes to complete the programs questions because it didnt ask for the same information in many different ways like paper forms often do. When she clicked on the button indicating that she was an only child, the program didnt ask any further questions about the health history of her siblings. The program had a few sections for John to fill out about his own family history. The kiosk then provided a curious section about granting the hospital permission to use the information generated during her care. Emilia had seen similar language in small type at the bottom of paper forms and had always initialed the boxes indicating her agreement, but she had never paid much attention to it. This program made the information permission seem almost as important as the health history itself: it requested specific permission to use all her medical information within the hospital, it asked for separate permission to release her record of care anonymously to state or federal authorities for research purposes, it asked for permission to automatically compare her profile with those sought for various clinical trials in the hospital, and on and on. In the end, the program summarized all the permissions she had given and asked her once more to approve the whole set. Emilia realized she didnt fully understand what sorts of clinical trials the questionnaire might be referring to, and so she changed her approval of that item to a request for more information.
After completing the program, she returned to the desk and the receptionist gave her a new plastic card. "Its a smart card," he said, "try not to bend it." Emilia asked why the program had been so annoyingly thorough in asking for permission to use her health information. "If we dont annoy you now, someone else might annoy you later," the receptionist explained. "We keep digital records instead of paper records in this hospital, so we cant control where our information goes just by locking the drawer of a filing cabinet. Of course, we use passwords, encryption, and other security measures to control who can read and alter your records in the hospital, but some of your health information goes elsewhere as well. We bill your insurance company electronically so all you ever have to worry about is the co-payment, and we abstract information from your records for reports requested by our management and those required by the government. The permission form youve just completed provides another layer of security that helps ensure that whenever your records are used for purposes other than directly providing care to you, you know about it and have approved it. Its a little like giving us a digital power of attorney anyone who has your health information and wants to release it to someone else for a different purpose has to check for your permission against the file youve just created. Thats the rule, even if everything directly identifying you has been removed from the record. Youre not giving us blanket permission to use your health data thats why the form is broken into so many separate questions covering different aspects of information sharing. And its fine to decline permission on this formthat just means well need to ask your permission on a case-by-case basis later."
Emilia thought for a moment. "So I own my health records?" The receptionist smiled, "No, and you certainly could not reassemble all the information once it is released, but you can help determine where that information goes. I see that youve asked for more information about enrollment in clinical trials. The computer has put a reminder on your nurse practitioners schedule to discuss that with you. Shell tell you about some of our ongoing research and discuss how your care might be affected by your decision to share or withhold information from the system that matches eligible patients with clinical trials."
Emilia and John had many more experiences with the kiosk following that initial visit. Each time they came to the clinic, they checked in by inserting the smart card and charging the co-payment to their credit card, then used their spare moments before the nurse practitioner was available to learn more about their baby. The computer referred to information in Emilias electronic patient record and then presented multimedia modules tied to the gestational age of the baby. When ultrasound scans were taken early in the pregnancy, they could review them on the screen in full motion, and Emilia was able to change the contrast and color schemes so that even John could recognize the babys face. They still got the little snapshot that most parents take home, but they could also e-mail their parents a minute or so of digitized video as well.
There were modules about the risks and benefits of alpha-fetal protein screening, genetic testing, pain medication during delivery, and the many other decisions they had to make. When John could not go with her to the prenatal visits, he would work through the same educational modules at home using a web browser over the Internet. Emilia liked being able to find the answers to some of her questions without having to ask the clinician directlynot only did she avoid having to play telephone tag with the clinic or call in at certain hours of the day, but she could get information on her own so that she was more confident in asking questions face-to-face.
Emilia collected information from several different electronic information sources besides the medical school. She borrowed a health information CD-ROM from a friend and found several more disks and videos at the city library. She subscribed to a free Internet mailing list about pregnancy and childbirth experiences and participated in a chat forum with other women on a commercial online service. And she made a point of regularly exchanging e-mail with some of the other women in her birthing classes at the hospital. That class was definitely not a place for high-tech multimedia programs, but for hand-holding and education from a nurse who had seen many, many births. Nonetheless, the scheduling for the class was set up through the hospital computer system, and the women kept in touch electronically with each other and their teacher between classes.
When Emilia arrived at the clinic, she answered a few questions that the kiosk had for her and then went into a room where a nurse recorded her weight and vital signs and measured her belly before the nurse practitioner arrived. The nurse inserted Emilias smart card into a computer in the examination room and typed the weight and size measurements into a form that appeared on the screen; the blood pressure machine and thermometer were hooked directly into the computer system and their measurements appeared on the same form automatically. Computers in the teaching hospital certainly werent limited to multimedia kiosks in the reception area. Every doctor, nurse, receptionist, and treatment room had one, and all the computers were interconnected by cables, radio, or infrared links. When the nurse practitioner entered the room, she was invariably holding a small computer in her hand and noting the new data point on the graph showing Emilias weight throughout her pregnancy. A summary of Emilias previous visits and her responses to the screening questions today were also provided. The nurse practitioners computer didnt have a keyboard, but that didnt seem to matter because there was little writing or typing involved. If the NP wanted to order a laboratory test, for instance, she selected the proper form from a menu on the screen and most of the information would already be filled in by the computer. She used a stylus to check off boxes indicating what she wanted done and then dispatched the order by tapping out her password on a little keyboard displayed on the screen.
During most of the encounter, the NP simply set the computer aside and concentrated on the patient. Today, she had a concerned look on her face. "Emilia, Im worried that your babys size seems to be reaching a plateau rather than sharply increasing in the usual way for the last few weeks of pregnancy." She showed her the screen of her handheld computer, which had a plot of the sequence of Emilias measurements along with a normative size development chart. "The dashed lines represent the limits for a standard distribution of women. Youre still within those boundaries, and so your baby may well be developing normally, but Id like to order a few tests, beginning with another ultrasound. I can see that the ultrasound technician has an opening at 2:20, and Id like you to get the test done as soon as possible."
Emilias heart fell. It would be her third ultra-sound so far. The first one had been exhilarating, and the second one less so. It had produced the expected pictures, but hadnt really been mentioned by her doctor after it was completed. It seemed that the clinicians were willing to order tests very readily, given that there wasnt any paperwork involved and the results appeared very quickly on their screens. How did they know that ordering so many tests helped ensure healthier deliveries? It certainly wasnt cheap. At this point, though, she wasnt worried that the ultrasound was unnecessary but that it would be a harbinger of bad news.
As she refocused her thoughts, she could hear the nurse practitioner saying, "You have an hour. Why dont you spend the time looking at our Delivery and Birth CD-ROM just in case you dont have the opportunity to finish those classes?"
In the staff conference room, Dr. Conway’s pager vibrated and the digital assistant on the table in front of her simultaneously awoke from its electronic slumber. The doctor felt a little sleepy herself, but at least she was getting continuing medical education credits for these lunchtime seminars utilizing the satellite link to Boston. She glanced at the incoming e-mail, which indicated that an obstetrics resident wanted her help with a decision about a potential c-section. The doctor left the seminar quietly and read the case précis that the digital assistant displayed as she walked down the hall.
Emilias ultrasound technician had used imaging software to measure pockets of amniotic fluid around the baby and had recognized that the volume of the pockets was critically low for this stage of pregnancy. One of the hospitals decision support systems had come to the same conclusion by comparing the numbers in the technicians summary to the predictions of the OB-GYN expert system. After asking the technician to confirm its finding, the computer issued an alert to the resident on call. The residents online work history indicated that he hadnt had direct experience with this type of case, so the system prepared a one-page summary of similar cases from the last year and a set of hyperlinks to the abstracts of relevant research literature. The resident skimmed the information as it appeared on his clipboard-shaped computer, talked to Emilia, and came to a quick decision to admit her to the hospital. With the touch of several on-screen buttons, he dispatched software agents that silently scheduled a room for Emilia, requisitioned a suite of monitoring equipment, ordered IV bags and Pitocin from the pharmacy, altered nursing assignments, and summoned Dr. Conway.
Emilia had entered the clinic that morning thinking it would be a normal day, but now she found herself in the labor and delivery room without so much as a suitcase . . . the baby needed to come out, labor would be induced, and the only question was whether a c-section could be avoided. She longed for the sort of uncomplicated birth described in her classes, but it was not to be. As she was calling John on her bedside phone and asking him to drive faster, a nurse wheeled in several monitors and an IV pump and quickly attached them to a bedside computer. The nurse opened a panel on the IV pump and inserted a bar-coded bottle; "PITOCIN-FLOW OFF" began glowing on the computer screen. Now the monitors hummed all around Emilia, measuring her pulse and blood oxygenation and the baby's as well, and ready to measure the contractions that would come. Emilia was attached to so many wires that she felt her body itself was a part of the information superhighway. She felt disoriented, but at least the nurse had sufficient time to sit with her for a few minutes and explain what was happening.
Dr. Conway walked in with the resident and introduced herself. "Weve been watching the fetal monitor data as we discussed your case in the next roomtheres no indication that the baby is in distress, so were going to induce labor as soon as your husband arrives and see how it goes. Please try to relax-chances are youll be home with your baby in 24 hours. Do you have any allergies to medications I should know about?" Emilia almost replied that there wasnt anything particularly relaxing about being sent home less than 24 hours after delivery, but she sighed and simply said, "No, no allergies. " Dr. Conway already knew thatthe pharmacy alert system had cross-checked Emilias history for potential problems with the pain-management drugs that might be used in the delivery and posted the results along with the drug prices on her digital assistantbut she always asked again, just to be sure.
She chose the medications she wanted from the displayed formulary and dispatched a software agent that would arrange for delivery of the drugs to Emilia bedside and update the pharmacys inventory and reordering system. She performed a quick physical exam and then sat at a console in the corner to dictate her findings into Emilias patient record. As Dr. Conway spoke into the microphone, the computer recognized her words and inserted them into forms on the screen in front of her much faster than she could have typed them. She filled out the care plan and entered nursing and laboratory orders with a few touches of a stylus on the screen of her digital assistant. Finally, she used a password to attach a digital signature and time stamp to the orders and the findings and then turned in her chair. "Emilia, when your husband arrives, you should start discussing names for the baby. That one decision our computers can t help you make!"
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This page is part of the course on Electronic Commerce & Online Market for Health Services. It was last revised on 10/22/2011 by Farrokh Alemi, Ph.D.