Red: AJG Jordens, toezichthoudend apotheker Prijs indicatie (euro’s) centrale inkoop Zuidwester Code Op basis van de inhoud van dit formularium worden geneesmiddelen door de apotheek vervangen door in het formularium opgenomen alternatieven. Refluxziekte, behandeling acute klachten 1. Omeprazol 40mg 1dd Refluxziekte, onderhoudsbehandeling 1. Omeprazol 10-20mg 1dd Ulcus pepticum, HP-era
A 67-Year-Old Man
Who e-Mails His Physician
Warner V. Slack, MD, Discussant
I probably e-mail my doctor once every 2 weeks. If I have a concern, it might be more often than that. I think that health DR SHIP: Mr S is a 67-year-old retired public service worker
issues are important, and by e-mailing my doctor and get- who lives in the Boston area with his wife. He has Medicare ting responses, I can print them out and refer to them later.
If the message is just about, “What do you think of this?” Approximately 4 months ago, Mr S started to communi- or I might have read an article and want some ideas, I’m not cate by e-mail with his hospital-based primary care physi- too concerned [about response time]. If it’s something with cian Dr G, using the hospital’s secure Internet site for pa- my general health, I’d like to see the doctor respond within tients. Previously, Mr S would call his physician with questions and leave a message. He now finds electronic com- I haven’t tried to access all [parts of] my patient records.
munication both easier and faster. He has not encountered I think it would be helpful, because I think it would give problems with this form of communication and has few con- me an idea of what my doctor’s thoughts were about my care.
cerns about privacy. Mr S tries to keep his e-mails brief be- I think it is part of the whole process of interacting with the cause he feels that his physician’s time is valuable. Mr S un- doctor. I think if a patient had access to his chart and he derstands that it takes time for his physician to respond to found something in there which he had concerns about, then e-mail questions and says he would be willing to pay addi- it would be helpful to e-mail the doctor and say: “I have a tionally for this. However, he is not sure how much such concern that this is not correct.” But I don’t think the pa- tient should be able to edit out anything on his own, be- Mr S has a medical history significant for prostate can- cause I think those are important issues that the doctor has cer, which was resected several years ago, osteoarthritis, al- lergic rhinitis, obstructive sleep apnea, and hypertriglyceri- I know that on the present PatientSite, some physicians demia. His medications include gemfibrozil, 600 mg twice are not involved at all, and I’m just wondering if it’s just the a day; naproxen sodium, 500 mg twice a day; aspirin, 81 newness of the program or if they’re too busy. I think if it mg/d; and budesonide nasal spray, 2 sprays in each nostril could be expanded to other doctors that would be helpful.
daily. He has no drug allergies. He smoked one pack of ciga- (Author’s note: Beth Israel Deaconess Medical Center main- rettes per day for 15 years and quit at age 35. He drinks al- tains a Web site that enables patients to view their medica- tion and results of their diagnostic studies; request prescrip- Mr S wonders if electronic access to his medical record tions, appointments, and referrals; and communicate with and e-mail communication could be expanded to all his phy- DR G: HIS VIEW
MR S: HIS VIEW
Generally, so far, a lot of these e-mails replace a conversa- Formerly, I would pick up the phone, call the health ser- tion I might have had with the patient on the phone any- vice, pose a question, and ask that my physician get back way. Before I started doing a lot of e-mail with patients, I to me by phone. This way, I go right in. I can e-mail spe- know [my colleagues and I] had concerns that we’d receive cific items that I would like to know about, different ap- “rambling novels” of e-mails. I have not found that to be pointments that I might have, or problems in my health Imight think of. And he e-mails me back, and so far it’s worked This conference took place at the Medicine Grand Rounds of Beth Israel Deacon-
out very well. e-Mail is great because you can sit down and ess Medical Center, Boston, Mass, on December 11, 2003.
you can compose something or write it out so you’ve touched Author Affiliation: Dr Slack is Professor of Medicine, Harvard Medical School, and
Co-Director, Division of Clinical Computing, Department of Medicine, Beth Israel
on everything, whereas, with a telephone conversation you Deaconess Medical Center, Boston, Mass.
might get off the telephone and 5 minutes later, say, “Gee, Financial Disclosure: Dr Slack is a member of the medical advisory board and a
part owner of Baby CareLink, marketed by Clinician Support Technology, Inc.
Corresponding Author: Warner V. Slack, MD, Division of Clinical Computing, Beth
Israel Deaconess Medical Center, 330 Brookline Ave, Boston, MA 02215 (wslack
For editorial comment see p 2273.
Clinical Crossroads Section Editor: Margaret A. Winker, MD, Deputy Editor.
2004 American Medical Association. All rights reserved.
(Reprinted) JAMA, November 10, 2004—Vol 292, No. 18 2255
true. My perception is that an e-mail interchange with the other forms of patient communication with computers may patient takes less time than a phone communication. The prove helpful? What do you suggest to Mr S? reason is that the patient actually has to think a little bit more DR SLACK: Mr S and Dr G speak approvingly of computer- about what their question is when they e-mail me, so it tends based communication in primary care medicine. Given the to be more focused. I think in an average day I probably spend enormous place that computers occupy today in so many 10 to 20 minutes on e-mail with patients. At this point, I’m of our lives, it is difficult to remember that barely more than not convinced it saves me time, but I’m not convinced it costs a quarter of a century ago, this technology was all but un- me time either. For some issues, it saves me time over the heard of outside of a small circle of computer specialists.
phone, but it doesn’t obviate the need for phone callsentirely.
e-Mail in Medicine
I have had increasing numbers of e-mails from patients e-Mail first emerged in clinical facilities in the 1970s, in con- asking me about things they saw on television or read, or junction with early hospital information systems.2 At the time, perhaps their cousin is taking this drug instead of the one few foresaw the extent to which e-mail would revolution- they’re taking. I think in that case an e-mail adds value for ize communication.3 In 2 Boston teaching hospitals, a home- the patient, although it probably creates something for me grown e-mail system designed originally to expedite com- to do that I wouldn’t have had to do if this medium didn’t munication between computer system users and developers, exist. To the extent that these questions are relatively simple, rapidly evolved into a cybermedicine lifeline that greatly en- it’s probably not too bad. However, having said that, I do hanced communication.2,4 Ten years after its introduction, feel strongly that physicians have to start getting reim- physicians, nurses, and other clinicians at these 2 hospitals bursed for doing this service. One thing that is neat about were reading over 40 000 messages per week.4 Since the e-mail is its intrinsic record. If you needed to prove to an 1980s, e-mail between clinicians has been reported with in- insurance company that there was an interaction, it’s easy There is no way to know when or where the first e-mail Some people have advocated letting patients actually add message was sent between a patient and physician, but it to or edit their record. I feel fairly strongly that that’s not likely occurred in the dawning days of the Internet; the first something I’m interested in having patients do, although I published reports appeared in the 1990s.10,11 When an im- certainly would support people’s ability to correct inaccu- mediate response is not required, e-mail enables commu- racies in their record. The main reason is not so much that nication between Mr S and Dr G at any time, at their own I have any issue with them looking at my notes, but my un- convenience, and without untimely interruptions. In a medi- derstanding is that if I allow them to look at my notes, then cal emergency, there is no substitute for the pager and tele- they can look at anyone’s notes. I really don’t want to find phone, but emergency situations aside, Mr S feels that e-mail myself trying to explain why other doctors wrote what they enables him to be more thoughtful, inclusive, and succinct wrote. I also don’t want to start to get into having a patient with his messages to Dr G. In addition, both Mr S and Dr G version of the record and a doctor version of the record. I can save copies of their messages for later review.
know some people are interested in that, but as a busy pri- Studies reported thus far tend to support Mr S’s assess- mary care doctor that scares me a bit.
ment. In surveys of people who, for the most part, were not I think it is a concern that a patient might find out some- yet communicating by e-mail with their physicians, the ma- thing really worrisome directly from the Web site, rather jority of those who responded were in favor of doing so— than from the physician. However, I have personally never 65% of 87 adults questioned in a university-based clinic,10 had anyone come across something that really was trou- 70% of 476 adults questioned in 2 university-affiliated pri- bling before I knew about it. There’s a separate issue. Is it mary care settings,12 74% of 325 parents questioned in a group good for patients, and does it improve their care? I sup- of pediatric clinics,13 and 65% of 954 users of a medically pose, by definition, they like having the information or else related Web site who were questioned online.14 In an on- they wouldn’t look at it. But does that help them to under- line survey polling patients already using e-mail with Uni- stand their medical conditions, and ultimately does it lead versity of California, Davis clinicians and other medical staff to them being healthier? That is the really big question.
members, of 232 who participated (response rate, 37%), 25%were satisfied and 61% were very satisfied with this use.15 AT THE CROSSROADS:
Of the 6% who were dissatisfied, the principal reason given QUESTIONS FOR DR SLACK
was a delay in the clinic staff’s response time. Six of the 8 How has e-mail access to clinicians affected patient- clinicians interviewed as part of the study indicated they were physician communication, patient care, and physicians’ lives? satisfied with their use of e-mail with their patients. The most What qualitative and financial issues are raised by electronic messages any clinician received was 6 per day.
access and e-mail communications? What issues are raised Mr S would like e-mail access to all of his physicians, but by patients’ electronic access to their medical records, and not all of them have as yet agreed to communicate online how does such access improve and/or complicate care? What with their patients. Some physicians who have responded 2256 JAMA, November 10, 2004—Vol 292, No. 18 (Reprinted)
2004 American Medical Association. All rights reserved.
to surveys have expressed concerns that patients will over- documentation for medicolegal purposes”; 32%, however, whelm them with messages.12,16 On the other hand, a mail disagreed.17 To date, no malpractice suits have been re- survey (response rate, 88%) of 178 physicians in university- ported in conjunction with the use of e-mail in medical affiliated ambulatory clinics who had used e-mail with their patients (with a mean of 7.7 messages received per month) Whether e-mail between patient and physician will im- found that 60% were “satisfied” with their messages “all or prove the quality and efficiency of patient care remains to most of the time,” 29% were “satisfied” “some of the time,” be determined. In a recent study in 2 university-based pri- and 55% believed that compared with telephone calls, e-mail mary care clinics, where 24 staff physicians and 74 resi- with patients “saves time.”17 Still, there are few studies from dent physicians were randomly assigned either to an inter- which to generalize, and whether physicians of the future will vention group, whose members used e-mail with their be overwhelmed by incoming messages remains an open ques- patients, or to a control group, the investigators found no tion and a source of concern. Mr S sends Dr G a message about significant difference over a 10-month period in either the once every 2 weeks. Dr G in turn spends between 10 and 20 number of phone calls to the clinic or the number of missed minutes daily communicating with patients by e-mail. By re- cent count, 160 of Dr G’s fellow physicians affiliated with Beth Clearly, however, e-mail between patient and physician Israel Deaconess Medical Center handle an average of 1 mes- is on the rise,19,26 and guidelines for appropriate topics, con- sage per day for each 100 patients among the 17666 total pa- tent, turnaround time, and documentation are now avail- tients in their practices using the medical center’s Web site.1 able to help patients and physicians use this new technol- However, usage ranges from 1 physician who receives mes- ogy with protection of both sender and receiver.27,28 sages from as many as 20 per day, to other physicians who Preliminary evidence from the 2 primary care clinics25 in- rarely communicate via e-mail and only with reluctance.18 In dicates that guidelines can be effective. A content analysis Dr G’s experience, superfluous messages are not a problem.
of 273 messages (randomly selected from 3 007 messages) He interprets lengthy or complicated messages as a signal to revealed that patients, who had been advised in advance to telephone the patient or to schedule an office visit. Dr G also focus the content of their messages, to limit the number of believes that the time he spends responding to e-mail from requests per message, and to avoid urgent requests or highly his patients is about equal to the time he saves in telephone sensitive content, for the most part, adhered to the guide- lines. There were no urgent messages; sensitive content per- Physicians also have concerns about breaches in confi- tained primarily to psychiatric medications; single re- dentiality,12,13,16 although messaging systems that use se- quests were the rule, and the tone was “generally formal, cure Web sites can effectively fend off unwarranted intru- sions. The physicians and patients in the University of In spite of the uncertainties,30 I believe that e-mail will California, Davis, study used a secure, Web-based messag- for the most part prove to be convenient and efficient for ing system,15 as do Mr S and Dr G.1 Reports of use of these those patients and physicians who acclimate to its use. A systems are thus far, few in number. On the other hand, this related issue, also of importance to Mr S and Dr G—whether technology should become more available at lower costs as the shared medical record will help in important ways to health-related institutions increasingly use the Internet for improve communication between patient and physician— Dr G feels strongly that medically related e-mail should be considered an integral component of a patient’s care, and The Medical Record Shared
that whoever pays for the care should also pay for such ser- Until the past few decades, the time honored, hand-written vices. Other physicians agree.16,17,19 In response, insurers have medical record was in most medical centers a classified, “eyes begun to consider methods of reimbursement, such as an only” document, restricted to use by clinicians, adminis- annual subscription rate with unlimited use for the patient trators, accountants, and lawyers.31,32 Information in the hands and a stipend for the physician, and, alternatively, as a fee of the patient was deemed dangerous as the patient might to the physician for each use, with or without a co- misunderstand, misinterpret, or be unduly traumatized by payment by the patient.20-22 On a trial basis the University the medical message. Patients were to receive only limited of California, Davis, physicians have received $25 from an information, parsed out with utmost care. With the best of insurer for each online communication with a patient.15,23 intentions, some physicians used deliberately complex ter- Still, as with all current and proposed plans for medical pay- minology in the presence of patients—“supratentorial” for psychiatric, “mitotic bodies” for cancer, and “hydroxylated Legal issues may arise with e-mail between patient and phy- radicals” for alcohol—to protect patients from fully under- sician. As an additional, complementary record of good medi- standing their conditions. Prescriptions were written in Latin, cal care, e-mail could be used in support of the physician in which, in fact, helped to prevent communication.
the courtroom. Of 178 university-affiliated physicians who On the other hand, information in the paper record was responded to a survey, 40% agreed that e-mail “enhances all too often disorganized, illegible, and hence incompre- 2004 American Medical Association. All rights reserved.
(Reprinted) JAMA, November 10, 2004—Vol 292, No. 18 2257
hensible to the physician as well. Not until the 1960s, when Regardless of study results, shared records are here to stay.
Weed presented the case for a “problem-oriented” record In 1990, the British paved the way with the Access to Health that would “guide and teach,” would there be a considered Records Act,46 and the proposal originally put forward by Shen- effort throughout the United States to reorganize the medi- kin and Warner has come to pass in the United States with cal record into a more functional document.33,34 the Federal Health Insurance Portability and Accountability In 1970, I proposed that patients and physicians alike Act (HIPAA) of 1996, which requires that patients must be would benefit if medical records were declassified, shared, able to see and get copies of their records and request amend- and developed jointly by patient and physician.34 A digital ments.40,47 Logistical difficulties associated with access to the computer, programmed to interact directly with a patient paper record have now replaced the more traditional con- to take a medical history, offered the opportunity to experi- cerns as the principal barrier to the shared medical record.
ment along these lines.35 The first patient to be interviewedby the computer became quickly engaged, and later, when The Computer and the Medical Record
his summary began to print, in a legible but otherwise con- The digital computer appeared on the hospital scene in the ventional format, he asked, “May I read that?” and in a break 1960s, first in financial offices and then, with the rudi- with longstanding tradition, he read his medical record and ments of an electronic medical record, in laboratories and discovered errors that needed correction. The computer in- clinical departments.48 In subsequent decades, workers in terview had been, and in our experience, would continue the United States and abroad turned with increasing activ- to be a convenient, acceptable means to share the medical ity to develop and implement cybermedicine systems to help record at a time when sharing was controversial and re- in the practice of medicine.49 Although progress has been slow—most computing in US hospitals remains financial In 1973, Shenkin and Warner proposed federal legisla- rather than clinical, the electronic medical record is still more tion to require physicians and their clinical facilities to pro- the exception than the rule and the computing is all-too- vide patients with their medical records.36 They predicted often undependable50,51—there are cybermedicine systems that such openness would improve the patient-physician re- in both the United States and internationally that have proved lationship, as well as the accuracy of records and the qual- highly useful to physicians in the care of their patients.52-59 ity of medical care. In the ensuing decades, even without At any time of day or night, Dr G and his colleagues can legislation, physicians both in the United States and abroad sign on to their computing system to obtain results of di- became increasingly interested in the effects of sharing medi- agnostic studies; access biomedical literature,60 read ad- cal records.37-39 In a comprehensive review of the litera- vice, alerts, reminders, and e-mail; and receive assistance ture40—12 studies in the 1970s, 21 in the 1980s, and 23 since in the day-to-day practice of medicine from terminals lo- 1990—Ross and Lin found 7 studies, including 3 that used cated throughout the hospital, in ambulatory clinics, in pri- controlled trials,41-43 that showed improved communica- vate offices, and in their homes.2,9,61,62 The benefit of cyber- tion between patient and physician when records were medicine for the clinician raised the question of whether it shared, and 10 in which patients who read their records found could help the patient as well. The response was to begin errors in need of correction. Although patients in psychi- to create secure Web sites that could give Mr S, and other atric settings were frequently disturbed by what they read,44 patients with Internet access, a messaging system that would Ross and Lin concluded that the shared records did not gen- be a secure way to communicate with their physicians; a erate substantial anxiety or concern in most studies. They means to view their medications, upcoming appointments, cautioned, however, that the studies were of limited qual- and results of their diagnostic studies; and request prescrip- ity and would serve more to help generate hypotheses for tions, appointments, and referrals.1,63-66 future research than to provide direction for current clini- Mr S likes to access the results of his laboratory and ra- cal practices. Still, the results are encouraging, and the out- diographic studies over the medical center’s PatientSite.1 He comes might have been substantially more favorable had the would also like to access Dr G’s narrative, but physicians’ records been prepared with the expectation that patients notes, even when part of Mr S’s electronic record, are not would read them, which apparently was not the case in most yet available via PatientSite. Dr G would be comfortable if his patients read his notes, but not the notes of other phy- In 1980, investigators brought together 2 physicians, a sicians, because he would have no control over such re- nurse practitioner, and a social worker who agreed to co- cords. If in the future physicians’ notes were prepared in elec- author their medical records with their patients.45 The re- tronic form with the expectation that patients would read cords evolved with a high degree of satisfaction among all them, and with due consideration of patients’ feelings upon participants. The clinicians’ early apprehension about ex- reading the notes, Dr G’s concerns could be mitigated. Early posing their patients to what had been confidential infor- results in a recent study at the University of Colorado showed mation gave way to a gratifying improvement in commu- that physicians’ concerns tended to abate once their pa- nication. The principal problem for the clinicians was the tients were granted access to electronically recorded narra- additional time required during the coauthorship.
tive notes.67 Mr S and his fellow patients would then have 2258 JAMA, November 10, 2004—Vol 292, No. 18 (Reprinted)
2004 American Medical Association. All rights reserved.
ready access to their write-ups in a legible, comprehensible economically feasible, clinically worthwhile, and accept- form, and the advantages of shared records could be sub- able to patients and physicians remains to be studied.77 But stantially augmented. Upon reading the notes, patients could now with the Internet, such studies are at least possible.
relay questions, comments, and suggestions to help their phy- In the future, the interactive computer could supersede sicians with the accuracy of their records.
even the telephone consultation for some common medi- Studies to date of the shared medical record have fo- cal problems. It can be argued that the largest, yet most ne- cused primarily on the patient’s perspective. For the busy glected health care resource worldwide is the patient or pro- physician, an increase in the time required in dialogue with spective patient, and that the interactive computer is well the patient, and the dilemma of how best to record contro- positioned to help patients to help themselves.78 Years be- versial and potentially litigious issues, could present formi- fore the availability of the Internet, a computer program for dable problems. On the other hand, shared electronic notes, women with urinary tract infections took a history of the if well documented, mutually understood, and agreed upon present illness, performed a review of systems, provided in- by patient and physician, could actually improve the qual- struction for the collection of a urine specimen,79 inter- ity and efficiency of the clinical transaction and serve as a preted laboratory data, presented options for therapy, ad- protection against unwarranted lawsuits.
dressed the patient’s priorities, incorporated the patient’sdecisions into choices about therapy, wrote a prescription Possibilities for the Future
(signed by a physician), wrote documentation for the chart, Although dialogue between patient and physician is the main- scheduled a follow-up visit, and wrote a summary (with re- stay of clinical medicine, practitioners face problems when minders) for the patient.80 In a preliminary trial of 36 women it comes to dialogue with their patients.68 Incomplete his- who completed the program (10 others were referred by the tories and insufficient counseling can result from limita- program to a physician for further evaluation), 35 decided tions in time beyond the physician’s control. As one pos- to take the treatment of choice at the time, sulfisoxazole for sible solution, Bachman has argued for greater use of 10 days , and 1 decided to wait for the results of her cul- computer-based medical histories in clinical practice.69 In ture, which were negative. The patients reacted positively support, he reviewed 61 studies from 196635 through 2001,70 to the program, and when asked, “How has it been to de- in a diversity of geographical and clinical settings, some con- cide for yourself about sulfa?” 30 found it to be “a good trolled, some descriptive, that indicate that dialogue be- thing.” Clearly, much more research is needed. But if pro- tween patient and computer has the potential to yield his- grams such as this can be demonstrated by careful study to tories on a wide variety of medical and psychological help patients to help themselves, these programs could be problems. Patients were positive about the computer inter- made available over the Internet to people in their homes, views in 43 of the 45 studies that included their assess- as well as in other protected and convenient places.
ment. Physicians’ responses were positive about the pro- In these litigious times, physicians understandably worry cess in 10 of the 18 studies that included their assessment, that shared medical records and electronic communica- mixed in their reaction in 6, critical (less accurate) in 1,71 tion will make them more vulnerable to litigation.24 It is pos- and negative in 1.72 The computers’ summaries were more sible, however, that the opposite will prove true. As Shaw inclusive of sensitive information than were the physi- once observed, poorly informed and subservient patients have cians’ summaries in 25 of the 28 studies in which compari- tended to regard their physicians as omniscient and are in- sons were made. On the other hand, false positive informa- credulous when outcomes are unfavorable.81 Perhaps the tion was a problem in some of the studies.35,73,74 more we welcome our patients as colleagues, and the more As a practical matter, it has been hard for clinics to pro- they participate in medical decisions, the more they will share vide the computers, protected space, and administrative over- with us the responsibility for these decisions, and the more head required for these interviews. Now, however, with the physicians will be free of the inappropriate liability that ac- availability of the Internet—Mr S and more than 100 mil- lion other individuals already use the Internet to obtain Finally, what of the digital divide? Although personal com- health-related information75,76—it should be possible to de- puter access started out in the hands of a few, it is now avail- liver to patients, in their homes, interactive, private inter- able to many more people; the computer is becoming views that obtain their medical histories and, with a pos- democratized as well as democratizing. As with all health- sible savings in physicians’ time, incorporate the results into related information directed to the patient, users of the In- patients’ electronic medical records, readily available to both ternet must be careful to consider the source and seek ad- patient and physician. The interviews could also offer health- ditional opinions; misinformation co-mingles with the useful related information and links to additional reputable medi- and well founded. Despite potential hazards, it is possible cal Web sites that could help relieve Dr G and his fellow in the future for well-developed, well-studied, and interac- physicians of some of the time currently devoted to respond- tive programs addressing the individual needs of patients ing to patients’ questions. More research is needed, how- to be a powerful form of adjunctive therapy in primary care, ever. Whether computer-based interviews will prove to be available to ever-wider segments of the population.
2004 American Medical Association. All rights reserved.
(Reprinted) JAMA, November 10, 2004—Vol 292, No. 18 2259
My advice to Mr S and Dr G is for them to stay on course.
calming someone down or dealing with an appropriate grief They are among the pioneers in the use of electronic com- reaction. The machine simply cannot substitute for the em- munication between patient and physician. I hope that they pathic consideration of a caring doctor.
will continue to find their online programs helpful; to try DR SLACK: I agree entirely and provisions have been built
new programs as they become available; and to offer advice into PatientSite to delay access to emotionally charged in- and suggestions to physicians working in the field. There formation. Thoughtful people are working on this issue. The are real dangers with the misuse of electronic communica- law now says that any patient who asks for a record can have tion in medicine such as depersonalization, true dehuman- it at any time. So we must collectively solve this issue to serve ization, breach of privacy, and a disruptive wedge between and protect both patient and doctor.
patient and physician, and we must keep our guard up. On A PHYSICIAN: One downside to sharing medical records
the other hand, if used wisely and well, this powerful new with a patient is that the medical record, as written by the technology has the potential to make the practice of medi- doctor, does not contain everything that the doctor is think- cine more satisfying for the physician, to augment the re- ing. The reason is that often the doctor is uncertain. We fail lationship between the patient and physician, and to im- to recognize the importance of uncertainty, but the patient doesn’t like uncertainty. The patient is very anxious—much more than the doctor. How would you address that? QUESTIONS AND DISCUSSION
DR SLACK: I would suggest an uncertainty folder for the
A PHYSICIAN: In my opinion, the focus on confidentiality is
physician, which belongs only to him or her, and is not avail- much ado about the wrong thing. I suspect privacy is gone able to the patient. This would be the written equivalent of forever, and we should spend our time working on how to “mental notes,” shared only at the discretion of the physi- deal with a lack of privacy, rather than trying to preserve it.
cian, not part of the medical record, not subject to sub- Although physicians are incredibly concerned about con- poena, and erased when no longer useful.
fidentiality and privacy, many patients are more interested Funding/Support: Clinical Crossroads is made possible by a grant from the Robert
in learning about their illness than keeping everything pri- vate. What do you think is going to happen with this issue Acknowledgment: We thank the patient and his doctor for sharing their stories in
person and in print.
DR SLACK: I believe confidentiality is very important, but
people do differ in the importance they place on this. Wehave devoted much effort in our hospitals to protect the con- 1. Sands DZ, Halamka JD. PatientSite: patient centered communication, services,
and access to information. In: Nelson R, Ball MJ, eds. Consumer Informatics: Ap-
fidentiality of information within our walls with pass- plications and Strategies in Cyber Health Care. New York, NY: Springer-Verlag; words and audit trails.2,4,9,83 In some ways, we can protect 2004.
2. Bleich HL, Beckley RF, Horowitz G, et al. Clinical computing in a teaching hospital.
the privacy of electronic records better than paper charts.
N Engl J Med. 1985;312:756-764.
Now, of more concern to me than the protection of confi- 3. de Sola Pool I. Tracking the flow of information. Science. 1983;221:609-613.
4. Safran C, Slack WV, Bleich HL. Role of computing in patient care in two hospitals.
dentiality within the walls of a hospital is the protection once clinical information leaves the hospital. For purposes of re- 5. Cowie JF. Use of electronic mail for patient record transmission. BMJ. 1985;291:
imbursement, hospitals and clinics are required to send con- 6. Branger PJ, van der Wouden JC, Schudel BR, et al. Electronic communication
fidential clinical information—diagnoses at a minimum— between providers of primary and secondary care. BMJ. 1992;305:1068-1070.
linked to charges, to a broad array of third-party payers, 7. Sands DZ, Safran C, Slack WV, Bleich HL. Use of electronic mail in a teaching
hospital. Proc Annu Symp Comput Appl Med Care. 1993;17:306-310.
strangers if you will who are beyond the control of the hos- 8. Bergus GR, Sinift SD, Randall CS, Rosenthal DM. Use of an e-mail curbside con-
pital, doctor, and patient. I suggest that we stop sending con- sultation service by family physicians. J Fam Pract. 1998;47:357-360.
9. Slack WV, Bleich HL. The CCC system in two teaching hospitals: a progress
fidential clinical information to the payer.84 We can de- report. Int J Med Inf. 1999;54:183-196.
velop a system that would group charges on the basis of 10. Neill RA, Mainous AG, Clark JR, Hagen MD. The utility of electronic mail as a
medium for patient-physician communication. Arch Fam Med. 1994;3:268-271.
mutually agreed-upon costs for preventive, diagnostic, and 11. Moyer CA, Stern DT, Katz SJ, Fendrick AM. “We got mail”: electronic com-
therapeutic measures, and the charges, separated from their munication between physicians and patients. Am J Manag Care. 1999;5:1513-1522.
clinical antecedents, would then be sent on to the payers, 12. Moyer CA, Stern DT, Dobias KS, et al. Bridging the electronic divide: patient
and provider perspectives on e-mail communication in primary care. Am J Manag
with provisions for internal review as well as for review by independent, external auditors to ensure the legitimacy of 13. Kleiner KD, Akers R, Burke BL, Werner EJ. Parent and physician attitudes
regarding electronic communication in pediatric practices. Pediatrics. 2002;109:
A PHYSICIAN: For specialists, I think our local PatientSite
14. Sittig DF, King S, Hazlehurst BL. A survey of patient-provider e-mail commu-
nication: what do patients think? Int J Med Inform. 2001;61:71-80.
approach needs to be considered differently. For example, 15. Liederman EM, Morefield CS. Web messaging: a new tool for patient-
in oncology, speaking for many of my confreres, we have physician communication. J Am Med Inform Assoc. 2003;10:260-270.
16. Hobbs J, Wald J, Jagannath YS, et al. Opportunities to enhance patient and
certainly eschewed paternalism. But in some instances, our physician e-mail contact. Int J Med Inform. 2003;70:1-9.
patients using PatientSite find their CT scan or MRI results 17. Gaster B, Knight CL, DeWitt DE, et al. Physicians’ use of and attitudes toward
before we have had a chance to review them and articulate electronic mail for patient communication. J Gen Intern Med. 2003;18:385-389.
18. Kowalczyk L. The doctor will e-you now: insurers to pay doctors to answer
a plan. What usually follows is a lot of time on our part just questions over Web. Boston Globe. May 24, 2004; Metro/Region Section: A1.
2260 JAMA, November 10, 2004—Vol 292, No. 18 (Reprinted)
2004 American Medical Association. All rights reserved.
19. Bodenheimer T, Grumbach K. Electronic technology: a spark to revitalize pri-
51. Wysocki B. Electronic health records get a push. The Wall Street Journal. July
mary care? JAMA. 2003;290:259-264.
20. American Medical Association. Category III codes for CPT. Category III 0074T.
52. Greenes RA, Pappalardo AN, Marble CW, Barnett GO. Design and implemen-
2004. Available at: http://www.ama-assn.org/ama/pub/article/3885-4897 tation of a clinical data management system. Comput Biomed Res. 1969;2:469-485.
53. Scherrer JR, Baud RH, Hochstrasser D, Ratib O. An integrated hospital infor-
21. American College of Physicians. The Changing Face of Ambulatory
mation system in Geneva. MD Comput. 1990;7:81-89.
Medicine—Reimbursing Physicians for Computer-Based Care. Advocacy. 1996- 54. Bakker AR. An integrated hospital information system in the Netherlands. MD
2003. Available at: http://www.acponline.org/hpp/e-consult.htm. Accessed July 55. McDonald CJ, Tierney WM, Overhage JM, et al. The Regenstrief Medical Rec-
22. American Academy of Family Physicians. Telemedicine: reimbursement for phy-
ord System: 20 years of experience in hospitals, clinics, and neighborhood health sician services. Rural Health Care. 2004. Available at: http://www.aafp.org/x7063 centers. MD Comput. 1992;9:206-218.
.xml#x7072. Accessed July 8, 2004.
56. Hendrickson G, Anderson RK, Clayton PD, et al. The integrated academic in-
23. RelayHealth Corporation. Reimbursement issues. Relay Health. 2004. Avail-
formation management system at Columbia-Presbyterian Medical Center. MD Comput.
able at: http://www.relayhealth.com/rh/specific/healthPlans/reimburse.aspx. Ac- 57. Stead WW, Bird WP, Califf RM, et al. The IAIMS at Duke University Medical
24. Luria Spiotta V. Legal concerns surrounding e-mail use in a medical practice.
Center: transition from model testing to implementation. MD Comput. 1993;10:225- JONAS Healthc Law Ethics Regul. 2003;5:53-57.
25. Katz SJ, Moyer CA, Cox DT, Stern DT. Effect of a triage-based E-mail system
58. Gardner RM. Collaboration in clinical computing at LDS Hospital. MD Comput.
on clinic resource use and patient and physician satisfaction in primary care: a ran- domized controlled trial. J Gen Intern Med. 2003;18:736-744.
59. Stead WW, Borden R, Bourne J, et al. The Vanderbilt University fast track to
26. Delbanco T, Sands DZ. Electrons in flight—e-mail between doctors and patients.
IAIMS: transition from planning to implementation. J Am Med Inform Assoc. 1996; N Engl J Med. 2004;350:1705-1707.
27. Kane B, Sands DZ; The AMIA Internet Working Group, Task Force on Guide-
60. Horowitz GL, Bleich HL. PaperChase: a computer program to search the medi-
lines for the Use of Clinic-Patient Electronic Mail. Guidelines for the clinical use of cal literature. N Engl J Med. 1981;305:924-930.
electronic mail with patients. J Am Med Inform Assoc. 1998;5:104-111.
61. Safran C, Rury C, Rind DM, Taylor WC. A computer-based ambulatory medi-
28. American Medical Association (YPS) guidelines for physician-patient elec-
cal record for a teaching hospital. MD Comput. 1991;8:291-299.
tronic communications. 2002 Available at http://www.ama-assn.org/ama/pub 62. Wang SJ, Middleton B, Prosser LA, et al. A cost-benefit analysis of electronic
/category/2386.html. Accessed August 24, 2004.
medical records in primary care. Am J Med. 2003;114:397-403.
29. White CB, Moyer CA, Stern DT, Katz SJ. A content analysis of e-mail com-
63. Gray JE, Safran C, Davis RB, et al. Baby CareLink: using the internet and tele-
munication between patients and their providers: patients get the message. J Am medicine to improve care for high risk infants. Pediatrics. 2000;106:1318-1324.
Med Inform Assoc. 2004;11:260-267.
64. Wald JS, Pedraza LA, Reilly CA, et al. Requirements for the development of a
30. Mandl KD, Kohane IS, Brandt AM. Electronic patient-physician communica-
patient computing system. Proc AMIA Symp. 2001;731-735.
tion: problems and promise. Ann Intern Med. 1998;129:495-500.
65. Tang PC, Black W, Buchanan J, et al. PANFOnline: integrating ehealth with an
31. Slack WV. Patient power: a patient-oriented value system. In: Jacques JA, ed.
electronic medical record system. Proc AMIA Symp. 2003;649-653.
Computer Diagnosis and Diagnostic Methods: Proceedings of the Second Con- 66. Department of Veterans Affairs. My HealtheVet. Available at http://www
ference on the Diagnostic Process held at the University of Michigan. Springfield, .myhealthevet.va.gov/ShowDoc/MHV/help/faq.htm#q1 Accessed March 22, 2004.
67. Earnest MA, Ross SE, Wittevrongel L, et al. Use of a patient-accessible elec-
32. Risse GB, Warner JH. Reconstructing clinical activities: patient records in medi-
tronic medical record in a practice for congestive heart failure: patient and physi- cal history. Soc Hist Med. 1992;5:183-205.
cian experiences. J Am Med Inform Assoc. 2004;11:410-417.
33. Weed LL. Medical records that guide and teach. N Engl J Med. 1968;278:593-
68. Slack WV. The computer and the doctor-patient relationship. MD Comput.
34. Weed LL. Medical records that guide and teach. N Engl J Med. 1968;278:652-
69. Bachman JW. The patient-computer interview: a neglected tool that can aid
the clinician. Mayo Clin Proc. 2003;78:67-78.
35. Slack WV, Hicks GP, Reed CE, Van Cura LJ. A computer-based medical his-
70. Rhodes KV, Lauderdale DS, Stocking CB, et al. Better health while you wait:
tory system. N Engl J Med. 1966;274:194-198.
a controlled trial of a computer-based intervention for screening and health pro- 36. Shenkin BN, Warner DC. Giving the patient his medical record: a proposal to
motion in the emergency department. Ann Emerg Med. 2001;37:284-291.
improve the system. N Engl J Med. 1973;289:688-692.
71. Card WI, Nicholson M, Crean GP, et al. A comparison of doctor and com-
37. Altman JH, Reich P, Kelly MJ, Rogers MP. Patients who read their hospital
puter interrogation of patients. Int J Biomed Comput. 1974;5:175-187.
charts. N Engl J Med. 1980;302:169-171.
72. Hastings GE, Whitcher C. Automated medical screening in an urban county
38. Metcalfe D. Whose data are they anyway? BMJ. 1986;292:577-578.
jail. Med Care. 1979;17:1238-1246.
39. Ross AP. The case against showing patients their records. BMJ. 1986;292:578.
73. Mayne JG, Weksel W, Shotz PN. Toward automating the medical history. Mayo
40. Ross SE, Lin C. The effects of promoting patient access to medical records: a
review. J Am Med Inform Assoc. 2003;10:129-138.
74. Lilford RJ, Bourne G, Chard T. Comparison of information obtainable by com-
41. Lovell A, Zander LI, James CE, et al. The St Thomas’s Hospital maternity case
puterized and manual questionnaires in an antenatal clinic. Med Inform (Lond).
notes study: a randomized controlled trial to assess the effects of giving expectant mothers their own maternity case notes. Paediatr Perinat Epidemiol. 1987;1:57- 75. Baker L, Wagner TH, Singer S, Bundorf MK. Use of the Internet and e-mail
for health care information. JAMA. 2003;289:2400-2406.
42. Elbourne D, Richardson M, Chalmers I, et al. The Newbury maternity care study:
76. HarrisInteractive. Cyberchondriacs continue to grow in America. Health Care
a randomized controlled trial to assess a policy of women holding their own ob- News. 2002. Available at: http://www.harrisinteractive.com/harris_poll/index.asp stetric records. Br J Obstet Gynaecol. 1987;94:612-619.
?PID=299. Accessed January 25, 2004.
43. Homer CS, Davis GK, Everitt LS. The introduction of a woman-held record
77. Slack WV. Patient-computer dialogue: a review. In: van Bemmel JH, McCray
into a hospital antenatal clinic: the bring your own records study. Aust N Z J Ob- AT, eds. Yearbook of Medical Informatics 2000: Patient-Centered Systems. Stut- stet Gynaecol. 1999;39:54-57.
tgart, Germany: Schattauer, 2000:71-78.
44. Bernadt M, Gunning L, Quenstedt M. Patients’ access to their own psychi-
78. Slack WV, Safran CS, Kowaloff HB, Pearce J, Delbanco TL. A computer-
atric records. BMJ. 1991;303:967.
administered health screening interview for hospital personnel. MD Comput. 1995; 45. Fischbach RL, Sionelo-Bayog A, Needle A, Delbanco TL. The patient and prac-
titioner as co-authors of the medical record. Patient Couns Health Educ. 1980;2: 79. Fisher LA, Johnson TS, Porter D, et al. Collection of a clean voided urine speci-
men: a comparison among spoken, written, and computer-based instructions. Am 46. Access to Health Records Act 1990 . London, England: HMSO; 1990.
J Public Health. 1977;67:640-644.
47. Department of Health and Human Services. Standards for privacy of individu-
80. Slack WV. Cybermedicine as a patient’s assistant. In: Slack WV. Cybermedi-
ally identifiable health information. Billing Code 4150-04M, Federal Register (2002)
cine: How Computing Empowers Doctors and Patients for Better Health Care. Rev ed. San Francisco, Calif: Jossey-Bass; 2001, 38-43.
48. Lindberg DAB. The Computer and Medical Care. Springfield, Ill: Charles C
81. Shaw B. The Doctor’s Dilemma: A Tragedy. Hamondsworth, England: Pen-
49. Collen MF. A History of Medical Informatics in the United States, 1950 to1990.
82. Slack WV. The patient’s right to decide. Lancet. 1977;2:240.
Bethesda, Md: American Medical Informatics Association; 1995.
83. Slack WV. The issue of privacy. MD Comput. 1997;14:8-10.
50. Bleich HL. Why good hospitals get bad computing. In Cesnik B, McCray AT,
84. Slack WV. Private information in the hands of strangers. MD Comput. 1997;
Scherrer JR, eds. MEDINFO ’98. Amsterdam, the Netherlands: IOS Press; 1988.
2004 American Medical Association. All rights reserved.
(Reprinted) JAMA, November 10, 2004—Vol 292, No. 18 2261
Superior Tribunal de Justiça EDcl no AgRg no RECURSO ESPECIAL Nº 255.170 - SP (2000/0036627-7) MINISTRO LUIZ FUX MINISTÉRIO PÚBLICO DO ESTADO DE SÃO PAULO EMBARGOS DECLARAÇÃO ACÓRDÃO PROFERIDO REGIMENTAL. AMBIENTAIS. AÇÃO CIVIL PÚBLICA. RESPONSABILIDADE. ADQUIRENTE. TERRAS RURAIS. RECOMPOSIÇÃO. MATAS. 1. A Medida Provisória 1.736-33 de 11/02/99,