“You’ve Got Mail”: Issues in Communicating With Patients and Their Families by E-Mail

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ACKNOWLEDGMENT

Linda Book is partially funded by grant RO1-DK50678 from the National Institutes of Health.

REFERENCES

1. Barera G, Bonfanti R, Viscardi M, et al. Occurrence of celiac disease after onset of type 1 diabetes: a six-year prospective longitudinal study.

Pediatrics. 2002;109:833– 838

2. Mohn A, Cerruto M, Lafusco D, et al. Celiac disease in children and adolescents with type I diabetes: importance of hypoglycemia.J Pediatr Gastroenterol Nutr. 2001;32:37– 40

3. Delco F, El-Serag HB, Sonnenberg A. Celiac sprue among US military veterans: associated disorders and clinical manifestations.Dig Dis Sci. 1999;44:966 –972

4. Egan LJ, Walsh SV, Stevens FM, Connolly CE, Egan EL, McCarthy CF. Celiac-associated lymphoma: a single-institution experience of 30 cases in the combination chemotherapy era.J Clin Gastroenterol. 1995;21: 123–129

5. Corrao G, Corazza G, Bagnardi V, et al. Mortality in patients with coeliac disease and their relatives: a cohort study.Lancet. 2001;358: 356 –361

6. Fabiani E, Taccari LM, Ratsch I, Di Giuseppe S, Coppa GV, Catassi C. Compliance with gluten-free diet in adolescents with screening-detected celiac disease: a 5-year follow-up study.J Pediatr. 2000;136: 841– 843

7. Bao F, Yu L, Babu S, et al. One third of HLA DQ2 homozygous patients with type 1 diabetes express celiac disease-associated transglutaminase autoantibodies.J Autoimmun. 1999;13:143–148

8. Kaukinen K, Collin P, Mykkanen AH, Partanen J, Maki M, Salmi J. Ce-liac disease and autoimmune endocrinologic disorders.Dig Dis Sci. 1999;44:1428 –1433

9. Strober W. Gluten-sensitive enteropathy. In: King R, Rotter JI, Motulsky AG, eds.Genetic Basis of Common Diseases. 1st ed. New York, NY: Oxford University Press; 1992:279 –304

10. Ventura A, Magazzu G, Greco L. Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease. SIGEP Study Group for Autoimmune Disorders in Celiac Disease. Gastroenter-ology. 1999;117:297–303

11. Jaeger C, Hatziagelaki E, Petzoldt R, Bretzel RG. Comparative analysis of organ-specific autoantibodies and celiac disease–associated antibod-ies in type 1 diabetic patients, their first-degree relatives, and healthy control subjects.Diabetes Care. 2001;24:27–32

12. Not T, Horvath K, Hill I, et al. Celiac disease risk in the USA: high prevalence of antiendomysium antibodies in healthy blood donors.

Scand J Gastroenterol. 1998;33:494 – 498

13. Hoffenberg EJ, Barriga GS, Eisenbarth F, et al. Prospective study of the frequency of celiac disease in children in Colorado: initial results.J Pe-diatr Gastroenterol Nutr. 2001;33:357

14. Hill I, Fasano A, Schwartz R, Counts D, Glock M, Horvath K. The prevalence of celiac disease in at-risk groups of children in the United States.J Pediatr. 2000;136:86 –90

15. Greco L. Epidemiology of coeliac disease. In: Maki M, Collin P, Visa-korpi JK, eds.Coeliac Disease. Proceedings of the International Symposium on Coeliac Disease. Tampere, Finland: Institute of Medical Technology, University of Tampere; 1997:9 –14

16. Book L, Hart A, Black J, Feolo M, Zone JJ, Neuhausen SL. Prevalence and clinical characteristics of celiac disease in Downs syndrome in a US study.Am J Med Genet. 2001;98:70 –74

17. Korponay-Szabo I, Kovacs J, Lorincz M, Torok E, Goracz G. Families with multiple cases of gluten-sensitive enteropathy.Z Gastroenterol. 1998;36:553–558

18. Catassi C, Ratsch I, Fabiani E, et al. Coeliac disease in the year 2000: exploring the iceberg.Lancet. 1994;343:200 –203

19. Dieterich W, Laag E, Schopper H, et al. Autoantibodies to tissue trans-glutaminase as predictors of celiac disease.Gastroenterology. 1998;115: 1317–1321

20. Burgin-Wolff A, Gaze H, Hadziselimovic F, et al. Antigliadin and antiendomysium antibody determination for coeliac disease.Arch Dis Child. 1991;66:941–947

“You’ve Got Mail”: Issues in

Communicating With Patients and

Their Families by E-Mail

“Y

ou’ve got mail” is a common refrain heard by 32 million America Online sub-scribers. Just as the telephone trans-formed both American society and the practice of medicine,1_{electronic communication (e-mail) is}

hav-ing a similar impact and will become an integral part of pediatrics. In the words of Jerome Kassirer, former editor of theNew England Journal of Medicine, e-mail and electronic transfer of information has the poten-tial to “induce cultural changes in the delivery of care even more revolutionary than any restructuring that is going on today.”2

In this issuePediatrics, Kleiner and colleagues3

re-port the results of a survey of parent and physician attitudes toward the use of e-mail. The results are not surprising. The majority of families have access to e-mail, with access significantly related to family income and education. Most families want to com-municate with us, and our practices, by e-mail. They express some concern about confidentiality. We, on the other hand, are quite ambivalent. Although only a small number of physicians were included in the survey, 79% indicated that they were not comfortable with e-mail communication with patients. These data are consistent with a recent survey of 834 physicians, which showed that 14% regularly or frequently use e-mail to provide clinical information to patients.4

Thirty-nine percent indicated that they do not cur-rently e-mail clinical information but would if secu-rity/privacy were fully guaranteed, and 40% re-sponded that even if issues of security/privacy could be resolved they would not e-mail information.

There are numerous benefits of e-mail.1,5,6

Com-munication is dysynchronous; that is, the 2 parties involved do not have to be in contact simultaneously to “speak with each other,” ending needless tele-phone-tag. Communication is rapid, relatively inex-pensive, simple, and convenient. It is available day or night, weekday, or weekend. It bypasses interme-diaries who may be unhelpful, and it conveys a certain anonymity that some patients prefer, partic-ularly for transmitting sensitive information. Unlike notes about a telephone conversation, e-mail notes can be detailed and cumulative; that is, reflect an entire exchange about a single subject, and enrich the medical record. They are also easier to save than notes from a telephone conversation. Physicians can clarify advice that was provided over the telephone or in face-to-face encounters and easily provide

ref-Received for publication Oct 4, 2001; accepted Oct 24, 2001.

The views expressed in this article are those of the authors and do not necessarily represent those of the National Institutes of Health, the Agency for Healthcare Research and Quality, or the US Department of Health and Human Services.

Address correspondence to Howard Bauchner, MD, 91 E Concord St, Bos-ton, MA 02118. E-mail: howard.bauchner@bmc.org

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erences to information available on the Internet. Fi-nally, patients can become more active partners in their own care.

What are the risks of e-mail? Will we be over-whelmed by the workload, who will pay for our time, and will conducting any other business become virtually impossible? The data from Kleiner hint at 1 critical aspect of doctor-patient e-mail communica-tion. Much of what families would like is the ability to “talk” to our offices, not just us. Camp and school forms, immunization records, subspecialty approv-als, prescription refills, scheduling appointments, and other activities related to providing care can be handled through e-mail. Poole and Glade7 _estimate

that 75% of calls entering a practice are nonclinical. As we develop e-mail communication centers in our offices, it is critically important that families have the ability to link with our offices, not directly to us. Messages should be triaged to the appropriate indi-vidual, just as telephone messages are categorized and distributed. Interestingly, one of the early re-ports of e-mail came from a pediatric gastroenterol-ogy group that in 1995 began providing preliminary consultations by e-mail.8 _{Of the 1239 consultations}

requested, 81% came from parents, 10% from physi-cians, and 9% from other health care professionals. They took an average of 3.95 minutes for the physi-cian to read and formulate a 1-page response. How many of these e-mail consultations resulted in a visit is not reported, although the vast majority of consul-tations, 92%, originated from outside the referral area for this practice. Obviously, the experience of primary care clinicians who begin communicating with their patients with e-mail is likely to be a bit different, because they have an ongoing, longitudi-nal relationship with them, but nevertheless, this study suggests that most e-mail communications will be brief and will not result in a health care visit.

There are other risks of e-mail communication. Foremost are those related to privacy and security.1,9

Currently, health care is undergoing dramatic revi-sion with respect to these issues. The Institute of Medicine recently released a report entitled “Protect-ing Data Privacy in Health Services Research.”10

Al-though this report focuses on issues related to re-search, they are just as applicable to those of e-mail communication. The new Health Insurance Portabil-ity and AccountabilPortabil-ity Act also will help guide us with respect to the ethical and legal challenges of e-mail.11 _{However, physicians will need to guard}

against using issues related to privacy and confiden-tiality, as a reason not to use e-mail. It is uncertain if e-mail is any less secure than medical records, faxes, answering machines, and voice mail.

There are other fascinating aspects of e-mail that physicians should be aware of if they engage in electronic communication with patients.1 _First,

e-mail communication should become part of the medical record. Although telephone conversations rarely make it into the medical record, because of the permanency of e-mail, ensuring that exchanges are incorporated into the chart will be important. Sec-ond, if physicians begin offering extensive consulta-tion by e-mail in states where they are not licensed,

are they practicing medicine? There is little legal precedent to guide us in this area. Third, some be-lieve that patients should be informed of the poten-tial risks and benefits of e-mail and that informed consent should be obtained from patients before any electronic communication. Patients seeking help be-cause they are acutely ill need to be directed away from e-mail and toward a “live” source of care. Cer-tainly patients should be informed of the limitations of e-mail, but many will still want to use the resource despite these limitations. The American Medical In-formatics Association has addressed many of these issues in their e-mail guidelines, including how mes-sages should be handled (subject heading, turn-around time, archiving of transactions, confirmation of patient requests, acknowledgment of messages, tone and type of language to use, etc) and medico-legal issues (patient consent, permissible transactions and content, encryption, confidentiality, etc).9

Recently, the Institute of Medicine released a re-port entitled “Crossing the Quality Chasm,” which calls for dramatic reengineering of how medicine is practiced.12_{They propose 6 quality aims for the 21st}

century, including a system of care that is patient-centered, timely, and efficient. Such a system would provide care that is respectful of and responsive to individual patient preferences, needs, and values and ensures that patient values guide all clinical decisions. In addition, the IOM report suggests that the future health care system should reduce waits and harmful delays in receiving care. They specifi-cally cite e-mail communication as a way to ensure that our health care system is more accessible, effi-cient, responsive, patient-centered, and of higher quality.10

There are numerous research questions yet unan-swered about e-mail communication. Does e-mail improve quality of care? It likely improves satisfac-tion with care, but satisfacsatisfac-tion is only 1 dimension of quality. How burdensome will e-mail be on a prac-tice? Much of what is now conducted by telephone will be done by e-mail, so it is not clear if e-mail will result in either additional or a redistribution of work, or a combination of both. Can e-mail help to reduce medical errors, enhance adherence with medications, and reduce health care costs? These are important goals of contemporary medicine. Will e-mail assist in providing patient-centered care, or will it simply become another barrier to effective doctor-patient communication? What are the perceived barriers to greater use of e-mail between patients and providers and how can they be reduced? Medicine has often been reluctant to embrace certain types of change, but at a time when consumerism is an important aspect of medicine, rejecting e-mail will be difficult to do. Finally, what will the impact of the so-called “digital-divide” be on health care disparities? It is possible that e-mail could serve to reduce rather than exacerbate disparity by lowering classical barriers to health care access.

The 3 of us have embraced e-mail, as have virtu-ally all of our colleagues and friends. It allows an open conduit for communication at all times, virtu-ally anywhere. Although most physicians are using

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e-mail with family, friends, and colleagues, few have made the leap to clinical e-mail with patients. The ease, reliability, and speed of this form of communi-cation needs to be extended to our patients and their families. Most are hoping for it, many are expecting it, and some will demand it.

Howard Bauchner, MD William Adams, MD

Department of Pediatrics

Boston University School of Medicine Boston Medical Center

Boston, MA 02118

Helen Burstin, MD, MPH

Center for Primary Care Research

Agency for Healthcare Research and Quality Rockville, MD 20852

ACKNOWLEDGMENT

The manuscript was completed when Howard Bauchner was the Child and Adolescent Health Scholar in Residence at the Agency for Healthcare Research and Quality.

REFERENCES

1. Spielberg AR. On call and online—sociohistorical, legal, and ethical implications of E-mail for the patient-physician relationship.JAMA. 1998;280:1353–1359

2. Kassirer JP. The next transformation in the delivery of health care.

N Engl J Med. 1005;322:52–54

3. Kleiner KD, Akers R, Burke BL, Werner EJ. Parent and physician attitudes regarding use of electronic mail in pediatric practices. Pediat-rics.2002;109;740 –744

4. Harris Interactive. New data show internet, website and e-mail usage by physicians all increasing. Available at: http://www.harrisinteractive. com

5. Ferguson T. Digital doctoring— opportunities and challenges in elec-tronic patient-physician communication.JAMA. 1998;280:1361–1362 6. Berger JE. These e-mail strategies can help pediatricians avoid risks.

AAP News. September. 2001;19:103

7. Poole SR, Glade G. Cost-efficient telephone care during pediatric office hours.Pediatr Ann. 2001;30:256 –267

8. Borowitz SM, Wyatt JC. The origin, content, and workload of e-mail consultations.JAMA. 1998;280:1321–1324

9. Kane B, Sands DZ. Guidelines for the clinical use of electronic mail with patients.Am Med Informatics Assoc. 1998;5:104 –111

10. Institute of Medicine.Protecting Data Privacy in Health Services Research. Washington, DC: National Academy Press; 2000

11. Chesney RW. Privacy and its regulation: too much too soon, or too little too late.Pediatrics. 2001;107:1423–1424

12. Institute of Medicine. Crossing, The Quality Chasm. Washington, DC: National Academy Press; 2001

Probiotics in Pediatrics

A

t birth, the gastrointestinal tract is sterile. Within hours, bacteria ingested during the birthing process rapidly colonize the gut. The gastrointestinal tract soon contains about 10 times as many bacteria as there are cells in the body.

Hun-dreds of species are present, many of which are unculturable and remain unidentified. It is these bac-teria that are responsible for priming the gastrointes-tinal immune system. Studies in germ-free mice have proven that without these bacteria, the systemic im-mune system will not function normally.1

After this initial colonization, a person’s individual gut flora remain remarkably constant throughout life. The gut immune system learns to recognize and tolerate those bacterial species acquired during early infancy. Consequently, it is very difficult to perma-nently change gastrointestinal flora after this time. As one would therefore expect, each person’s bacte-rial flora are remarkably similar to that of his/her mother, as they were initially ingested from the mother’s vagina at birth. The vagina is typically col-onized with normal fecal flora.2

Most gastrointestinal organisms are relatively be-nign. Some are potentially more pathogenic; how-ever, many are actually beneficial. It is these benefi-cial organisms that have attracted attention as possible probiotics. Probiotics are defined as live mi-croorganisms that, when ingested, produce some therapeutic or preventive health benefit.3_{Because of}

the difficulty in permanently changing intestinal flora, successful colonization with a probiotic is usu-ally transient. In fact, many so-called probiotics fail to colonize even transiently, as the gastrointestinal tract has many defenses that inhibit colonization. These include gastric acid, duodenal bile, mucin, and the gut immune system.4 _{Successful probiotics are}

capable of resisting these insults, and transiently take up residence in the gut. By definition, they also must be of human origin and have some demonstrable health promoting benefits proven by clinical studies. It would seem logical that most health promoting benefits of probiotic organisms would be seen in disorders of the gastrointestinal tract. Certainly, mostly clinical studies have involved either the treat-ment or prevention of gastrointestinal disorders. Per-haps the disorder most thoroughly studied is acute diarrhea in children. Lactobacillus rhamnosus GG, for example, has been shown to significantly reduce the severity and duration of acute viral enteritis.5

Com-parable findings have been demonstrated with Lac-tobacillus reuteri.6_{It is interesting to note that, at least}

in the case ofLactobacillus GG, these benefits are not observed in the prevention or treatment of bacterial enteritis.7 _{Certain probiotics organisms also have}

some preventative role, reducing the risk of acquisi-tion of viral gastroenteritis.Lactobacillus GGand cer-tain strains of bifidobacteria have been shown to reduce the risk of diarrheal disease in high-risk pop-ulation groups in both hospital and free-living envi-ronments.8 –10

Diarrhea is a common complication of antibiotic therapy, especially in children using broad-spectrum agents. Lactobacillus GG has been shown to reduce the risk of antibiotic associated diarrhea by approx-imately 75% in children in studies both in United States and Finland.11–12_{One study in adults failed to}

confirm this finding, however.13_{As the dosage used}

in this adult study was lower on a per kilogram basis than in the pediatric studies, it is possible that the

Received for publication Feb 19, 2002; accepted Feb 19, 2002.

Reprint requests to (J.A.V.) Departments of Pediatrics and Internal Medi-cine, University of Nebraska Medical Center, 985160 Nebraska Medical Center, Omaha, NE 68198-5160.

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DOI: 10.1542/peds.109.5.954

2002;109;954

Pediatrics

Howard Bauchner, William Adams and Helen Burstin

by E-Mail

''You've Got Mail'': Issues in Communicating With Patients and Their Families

Services

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http://pediatrics.aappublications.org/content/109/5/954

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