“Like hunger, like thirst”: patients, journals, and the internet
1998; Elsevier BV; Volume: 352; Linguagem: Inglês
10.1016/s0140-6736(98)90301-4
ISSN1474-547X
Autores Tópico(s)Digital Imaging in Medicine
ResumoFaith McLellan is Faculty Associate and Director, Manuscript and Grant Preparation Service, for the Department of Anesthesiology at the University of Texas Medical Branch (UTMB), Galveston, Texas, USA. She was awarded a bachelor's degree in English from wake Forest University, Winston-Salem, North Carolina, in 1982, and a PhD in medical humanities from UTMB in 1997; her dissertation was about narratives of illness that patients and their families are writing on the internet. Dr McLellan is a contributing editor of The Lancet, and is co-editor of a literature and medicine series currently appearing in the journal, for which she has written several articles. Not surprisingly, patients, their families, and their friends are among the growing numbers of users of the internet and the worldwide web. In addition to their myriad other uses, electronic resources are increasingly consulted, by both the well and the sick, for health and medical information. Perhaps the most familiar of these are websites for patient education and support, and other sources of medical and scientific information, including electronic versions of medical journals. Patients are also using the medium as a means of publication for their stories of illness. Some of the most interesting dimensions of this development are accounts, both textual and graphic, of personal experiences of illness, and e-mail lists dedicated to specific diseases and conditions. The internet also serves patients as an emotional outlet during crisis, and as a route of personal and group communication, in ways that may powerfully affect relationships between patients and physicians.1Kassirer JP The next transformation in the delivery of health care.N Engl J Med. 1995; 332: 52-53Crossref PubMed Scopus (171) Google Scholar Many journals are now online, and they report considerable access by readers who are not medical professionalsY So, how do—or should-the goals of journals dovetail with the needs of patients, with whom journals share this new textual space? Because of its prominence in disseminating information about the state of the art in medicine, the general medical journal of the future especially may find itself at an uneasy intersection between health-care professionals and the lay public. Both groups have pressing needs for information, but the public is not the journal's primary audience. The public's increasing demand for information, though, suggests that journals' responsibilities may be expanding, as the need for quality resources becomes ever more critical.4Horton R In defence of why.Lancet. 1998; 351: SI1-SI12Google Scholar, 5Lundberg GD One multimedia medical world.JAMA. 1995; 274: 655Crossref PubMed Scopus (10) Google Scholar The influences on this shift in focus are many: the demand for information is driven by the media, by the changing doctor-patient relationship created in an era of managed care and other economic pressures, and by the challenges physicians face in providing for their patients' needs beyond diagnosis and treatment. More simply, electronic resources are becoming important in virtually every aspect of life, so why shouldn't health be affected by this development? People who use the internet for everything else see it also as a natural source of information about disease and illness. One survey in the USA showed that nearly half of adult internet users have recently accessed health and medical websites.6Brown MS Healthcare information seekers aren't typical Internet users.Medicine on the Net. 1998; 4: 17-18Crossref Google Scholar The surveyors extrapolate from their data that this figure represents some 15·6 million people—a formidable potential audience that includes patients, their families, and "well consumers". The quality of the online information accessed by this audience is crucial. Questions have been raised about the reliability of electronic sources in general, with specific concerns about recommendations posted on health and medical sites.7Sonnenberg FA Health information on the Internet: oppotunities and pitfalls.Arch Intern Med. 1997; 157: 151-152Crossref PubMed Google Scholar, 8Impicciatore P Pandolfini C Casella N Bonati M Reliability of health information for the public on the World Wide Web: systematic survey of advice on managing fever in children at home.BMJ. 1997; 314: 1875-1879Crossref PubMed Scopus (501) Google Scholar, 9Wyatt JC Commentary: measuring quality and impact of the World Wide Web.BMJ. 1997; 314: 1879-1881Crossref PubMed Scopus (212) Google Scholar, 10Jadad AR Gagliardi A Rating health information on the Internet: navigating to knowledge or to Babel?.JAMA. 1998; 279: 611-614Crossref PubMed Scopus (584) Google Scholar, 11Silberg WM Lundberg GD Musacchio RA Assessing, controlling, and assuring the quality of medical information on the Internet: caveant lector et viewor—Let the reader and viewer beware.JAMA. 1997; 277: 1244-1245Crossref PubMed Google Scholar A spokesperson for the US Department of Health and Human Services, which has recently updated its own government "healthfinder site", said, "Trying to get health information from the Internet is like drinking from a firehose, and you don't even know what the source of the water is".12Meckler L Consumers get health advice on nethttp://www.ap.org/APnews/Google Scholar Various standards have been suggested as guides to the assessment of internet information (panel), and many websites carry a statement about their adherence to such standards.11Silberg WM Lundberg GD Musacchio RA Assessing, controlling, and assuring the quality of medical information on the Internet: caveant lector et viewor—Let the reader and viewer beware.JAMA. 1997; 277: 1244-1245Crossref PubMed Google Scholar, 13Health on the Net Foundation code of conduct for medical and health web siteshttp://www.hon/ch/HONcode/conduct.htmlGoogle Scholar The instruments used to assess quality have themselves been recently scrutinised.14Culver JD Gerr F Frumkin H Medical information on the Internet: a study of an electronic bulletin board.J Gen Intern Med. 1997; 12: 466-470Crossref PubMed Scopus (141) Google ScholarPanelAssessing the quality of medical information on the internetAuthorship •Authors and contributors named•Clearly labelled as medical professionals or not•Affiliations and credentials specified•Contact information given, including webmaster's e-mail addressAttribution •References and sources given•Any relevant copyright notices specifiedConfidentiality •No disclosure of confidential information about individual patients or website visitors•Legal requtrements for medical and heath information Policy in location of website and mirror sites met or exceededCurrency •Dates of creation of content and of last modification posted•Links to mirror sites orovidedDisclosure •Website ownership stated•All commercial interests specified, including sponsorship, advertising, underwriting, funding agreements•Potential conflicts of interest noted•Advertising differentiated from original site contentLegitimacy •Claims about treatments, products, or services supported by balanced evidencePurpose •Information supports but does not replace patient-physician relationshipModified from Silberg et al11Silberg WM Lundberg GD Musacchio RA Assessing, controlling, and assuring the quality of medical information on the Internet: caveant lector et viewor—Let the reader and viewer beware.JAMA. 1997; 277: 1244-1245Crossref PubMed Google Scholar and Health on the Net Foundation.13Health on the Net Foundation code of conduct for medical and health web siteshttp://www.hon/ch/HONcode/conduct.htmlGoogle Scholar Authorship •Authors and contributors named•Clearly labelled as medical professionals or not•Affiliations and credentials specified•Contact information given, including webmaster's e-mail address Attribution •References and sources given•Any relevant copyright notices specified Confidentiality •No disclosure of confidential information about individual patients or website visitors•Legal requtrements for medical and heath information Policy in location of website and mirror sites met or exceeded Currency •Dates of creation of content and of last modification posted•Links to mirror sites orovided Disclosure •Website ownership stated•All commercial interests specified, including sponsorship, advertising, underwriting, funding agreements•Potential conflicts of interest noted•Advertising differentiated from original site content Legitimacy •Claims about treatments, products, or services supported by balanced evidence Purpose •Information supports but does not replace patient-physician relationship Modified from Silberg et al11Silberg WM Lundberg GD Musacchio RA Assessing, controlling, and assuring the quality of medical information on the Internet: caveant lector et viewor—Let the reader and viewer beware.JAMA. 1997; 277: 1244-1245Crossref PubMed Google Scholar and Health on the Net Foundation.13Health on the Net Foundation code of conduct for medical and health web siteshttp://www.hon/ch/HONcode/conduct.htmlGoogle Scholar A few studies have evaluated electronic medical sources. Culver et al,14Culver JD Gerr F Frumkin H Medical information on the Internet: a study of an electronic bulletin board.J Gen Intern Med. 1997; 12: 466-470Crossref PubMed Scopus (141) Google Scholar in their assessment of an online discussion group about painful hand and arm conditions associated with repetitive strain injury, concluded that most of the advice was given by people without medical training, and a third of it was classified as "unconventional, based on limited evidence, and/or inappropriate". Impicciatore and colleagues8 assessed websites about fever in children, comparing the online recommendations with guidelines published in a textbook of paediatric practice. The content of the websites was rarely congruent with the guidelines, suggesting that electronic resources must be checked "for accuracy, completeness, and consistency"/ One paediatrician has cautioned, though, that while his patients' parents are often armed with inaccurate advice obtained from the internet, they are also just as likely to obtain erroneous information from print media.15Health information on the Internet. The Internet consultation [interview with Tim David]http://www.wellcome.ac.uk/healthinfo/bd2.htmlGoogle Scholar The physician-authors of a website designed to provide information about cardiac arrhythmias to health-care professionals studied e-mail messages sent to the site by patients and families.16Widman LE Tong DA Requests for medical advice from patients and families to health care providers who publish on the World Wide Web.Arch Intern Med. 1997; 157: 209-212Crossref PubMed Google Scholar The purposes of 70 such inquiries, almost all of which were germane to the topic, were to get help with diagnosis, to understand a prognosis or prescribed therapy, and to get information about a disease or medication. Follow-up with a subset of 22 of these correspondents indicated that most (n=16) were satisfied that their own physicians were providing appropriate care, with the remainder obtaining new consultations based on the replies to their messages. The study's authors concluded that lay people have increasing needs for objective medical advice, which they apparently do not always get from local health-care systems. They suggested the construction of guidelines for physicians who advise patients over the internet, a recommendation that poses enormous logistical and legal problems. Even less perilous measures, however, suggest a new role for clinicians: "that of intermediary between patients and the health-related information they obtain from other sources".7Sonnenberg FA Health information on the Internet: oppotunities and pitfalls.Arch Intern Med. 1997; 157: 151-152Crossref PubMed Google Scholar Medical journals may have related functions in the interplay between patients and information, a fluid and evolving type of public sphere.2Horton R The unstable medical research paper.J Clin Epidemiol. 1997; 50: 981-986Summary Full Text PDF PubMed Scopus (7) Google Scholar Important public-health information includes assessment and dissemination of the best evidence for clinical problems, processes that demand evaluation, analysis, and reanalysis of research, and the highest quality peer and editorial review. And more studies are needed, after the development of innovative designs and methods, to define "the web's clinical role and the evaluation problems it raises".9Wyatt JC Commentary: measuring quality and impact of the World Wide Web.BMJ. 1997; 314: 1879-1881Crossref PubMed Scopus (212) Google Scholar Further, journals may do well to tailor information, in both print and electronic forms, to the ultimate recipients of the research they publish, perhaps in the form of lay summaries of articles, patient education materials, or pointers to sound sources of consultation, discussion, or support. The Patient Page recently launched by the Journal of the American Medical Association is an important move in this direction.17Glass RM Moller J Hwang MY Providing a tool for physicians to educate patients: the JAMA Patient Page.JAMA. 1998; 279: 1309Crossref Scopus (6) Google Scholar Journals may also need to pay concerted attention to a relatively neglected form of evidence-that provided by patients in the form of their stories of illness.18Spiers J "Only a novell" Jane Austen, hyperspace, and the story of patient power.in: Marinker M Sense and sensibility in health care. BMJ Publishing Group, London1996: 199-270Google Scholar Here the electronic medium serves not only as a repository of information but also as a tool for a new kind of publication. The medium has made it possible for nearly everyone with the requisite equipment to become a publisher, a development that clearly may have both egalitarian advantages and aesthetic drawbacks. Traditional forms of patients' stories, also known as pathographies, or narratives of illness, have usually been book-length, first-person print works that have survived some form of editorial scrutiny?19Hawkins AH Reconstructing illness: studies in pathography. Purdue University Press, West Lafayette, Indiana1993Google Scholar, 20Frank AW The wounded storyteller: body, illness, and ethics. University of Chicago Press, Chicago1995Crossref Google Scholar, 21McLellan MF Literature and medicine: narratives of physical illness.Lancet. 1997; 349: 1618-1620Summary Full Text Full Text PDF PubMed Scopus (12) Google Scholar, 22Jones AH Literature and medicine: narratives of mental illness.Lancet. 1997; 350: 359-361Summary Full Text Full Text PDF PubMed Scopus (15) Google Scholar These accounts focus on the particular experience of individual patients and on their personal interpretations of the meaning of illness. Though the focus of electronic forms of these narratives similarly remains on patient experience, the internet has vastly expanded the possibilities of the genre.23Katz J The tales they tell in cyber-space are a whole other story.New York Times. Jan 23, 1994; (section 2,1)Google Scholar, 24McLellan MF The electronic narrative of illness.in: PhD dissertation. University of Texas Medical Branch, 1997Google Scholar Because of its communicative uses, its linkage, graphics, video, and audio possibilities, and a relative lack of space-contraints, the electronic medium can radically alter the authorship, audience, form, and length of illness narratives. Unlike a book, for example, an electronic narrative can include details of events that happened only minutes previously. The narrative, which can be constructed through the responses of an unlimited number of readers in addition to the "primary" author, can have many discrete parts, somewhat like the chapters in a book. Narratives on web pages can also include links to other sites, thus creating a multiply branched story that can be read in varying order-ie, one in which readers may find "intersecting stories" with different emphases and points of view.25Murray JH Hamlet on the holodeck: the future of narrative in cyberspace.in: Free Press, New York1997: 84Google Scholar This potential for non-linearity, a narrative characteristic that is not fully exploited in most computer writing, is nonetheless an important feature of hypertext,25Murray JH Hamlet on the holodeck: the future of narrative in cyberspace.in: Free Press, New York1997: 84Google Scholar, 26Smith BH Narrative versions, narrative theories.in: Mitchell WJT On narrative. University of Chicago Press, Chicago1980: 209-232Google Scholar "text composed of blocks or words (or images) linked electronically by multiple paths, chains, or trails in an open-ended, perpetually unfinished textuality described by the terms link, node, network, web, and path"27Landow GP Hypertext: the convergence of contemporary critical theory and technology.in: Johns Hopkins University Press, Baltimore1992: 3Google Scholar Some electronic narratives are created as traditional texts-that is, the electronic environment is incidental, with the computer being only a tool of composition. They are usually singly authored, first-person writings that consist solely of text. Other kinds of narratives demonstrate intrinsic features of computer-mediated writing. Certain text-only narratives, for example, take shape as exchanges of online conversation in discussion or news groups or chat rooms. The discussion may consist of one person's story, or it may have many stories embedded in it. Other illness narratives exist as websites that may include graphic images, photographs, music, radiographs, laboratory data, and hot links to other sites. Electronic narratives may be constructed as diaries, with entries that document, often in exquisite detail, the day-to-day minutiae of illness. The topics run the gamut of the illness experience: the physical effects of chemotherapy, the jumble of emotions that chronic illness stirs up in families, the bureaucratic entanglements of clinics, hospitals, and insurance companies, miscommunication between doctors and patients, and gratitude for serendipitous acts of kindness. Writers' motivations can be multifaceted, with the narrators often explicitly trying to help others in similar situations. Some have religious or philosophical orientations, or they aim to advance other agendas.28Kirschke D. Update on Erich Hollishttp://www.lifeway.org/khupdate.htmlGoogle Scholar, 29Hinnrichs DLEG. Diana's storyhttp://chemo.netserv.com/MyStory.htmlGoogle Scholar Some narratives, in addition to communicating a personal story, also have didactic goals: they attempt to educate readers about heart disease or options for reconstruction after mastectomy or the process of organ transplantation.30Heart lightshttp://www.smartlink.net/~hiller/susan/Google Scholar, 31Murray P. My experience with breast cancer (illustrated)http://web.mit.edu/afs/athena.mit.edu/user/p/a/pamurray/www/artbc.htmlGoogle Scholar There is frequent evidence that narrators have consulted the medical literature and that they have also sought alternative or complementary therapies. Many electronic narratives, unfortunately, are aesthetically lacking, and serve more as catharsis than as art; others are clearly the creative products of talented storytellers and designers. One such artistic site is a photographic essay about a woman's experience of breast cancer.32Byram S Brodsky C Cancer destroys, cancer builds.Cultronix. 1996; (Site accessed April 24, 1998)http://eserver.org/cultronix/stephanie/Google Scholar Cancer Destroys, Cancer Builds consists of 15 photographs with brief accompanying text by the patient; an interview between the writer/patient and the photographer; information about the collaborators on the project; and a link to an e-mail address for comments and reaction. The photographs, the real vehicle of this narrative, are often stark and jarring, the text spare, intense, and reflective. In this fine consonance between the product and the medium, in which there are so many possibilities for communication besides words, the overwhelming losses of serious illness are graphically and compellingly depicted. Insofar as they uniquely illuminate the experience of illness, electronic narratives are an important contribution to the literature of patients' stories, and, ultimately, to effective clinical practice. But the phenomenon is not an unqualified good; the extent to which intimate, personal details are freely given, privacy is abandoned, and misleading or erroneous information abounds can be disquieting, to say the least. Electronic narratives reveal a number of troubling legal and ethical issues, some arising from the nature of the medium itself, which seems at once both open and private. Participants often report that electronic correspondence feels intimate, even though the communication can take place among vast and unknown audiences. Add to this mix the various forms of online personae possible on the internet, especially with regard to pseudonymity and anonymity, and questions of identity and veracity take on heightened importance.33Turkle S Life on the screen: identity in the age of the Internet. Simon and Schuster, New York1995Google Scholar Are people online who they claim to be? How can or should their assertions be verified? Is it necessary to verify the details and events described? Or is it enough that these are, quite apart from verifiable facts, the legitimate perceptions, feelings, and reactions of patients? These questions are confronted every day. in clinical practice, as patients' subjective presentations are filtered through objective lenses. Some physicians have suggested that the degree of revelation in these stories may violate the confidentiality of the doctor-patient relationship. Only the professional, however, is bound to keep the relationship confidential. Patients are free to say whatever they wish, but whether such disclosure is good practice may be another matter. It is critical to remember that the telling of patients' own stories, even when replete with detailed personal information, is not new. What is new is the immediacy and the extent of dissemination that the internet allows. Messages describing events that took place only moments previously may lie as close to authentic experience as readers are likely to get, but their authors may also, upon later reflection, find themselves regretting having hit the "send" button in the heat of the moment. In this way the virtues of electronic communication are inextricably intertwined with its weaknesses. Questions of libel and malpractice may emerge in electronic narratives, which often give specific details of clinical encounters, such as the recounting of conversations with named physicians. Sometimes the writers include laboratory data or radiographic images as part of their stories. It is not difficult to imagine how varying interpretations of all these aspects of clinical care could raise the spectre of liability. Medical journals have recently debated the intricacies of consent to the publication of information about individual patients.34Smith R Informed consent: edging forwards (and backwards).BMJ. 1998; 316: 949-951Crossref PubMed Scopus (47) Google Scholar Although journals have different practical reasons for concern about this issue than do patients telling autobiographical stories, some issues, especially those related to exploitation and manipulation, are the same. How do the ethical issues-those that have to do with autonomy and respect for persons, for example-differ when the patient, not the doctor, is the one offering the story? And what happens when the author is not the subject? More troubling than the degree of self-revelation in illness stories is the ethics of telling another person's story, as when a parent writes about the illness of a minor child. In most of these instances, the question of consent is largely unspoken. Finally, psychosocial aspects of electronic narratives may be just as complicated as the ethical issues. It is disheartening, but unsurprising, that a new form of Munchausen syndrome-"virtual factitious disorders"- may be emerging, aided by the "unabashedly nurturing" character of many online support groups.35Grady D Faking pain and suffering in Internet support groups.New York Times. April 23, 1998; : D1PubMed Google ScholarGrady D Faking pain and suffering in Internet support groups.New York Times. April 23, 1998; : D7Google Scholar The internet "offers anonymous access to vast amounts of information on illnesses and support groups for even the rarest diseases, thus opening up a new world of opportunities for people with the urge to pretend they are sick ' The proliferation of newsgroups and chat rooms also offers a seemingly limitless audience for tales of woe. Instead of wandering from hospital to hospital, people can click from one support group to another. Some, pretending to be ill, have joined more than one, and some sign onto a single group more than once, using different names and acting out different roles".35Grady D Faking pain and suffering in Internet support groups.New York Times. April 23, 1998; : D1PubMed Google ScholarGrady D Faking pain and suffering in Internet support groups.New York Times. April 23, 1998; : D7Google Scholar These incidents again ask us to consider the importance of veracity, and they reinforce the need for readers to bring interpretive skills to bear on patients' stories, skills that balance critique with compassion and discernment. Knowledge is power, and power changes relationships. As ways of communicating change, and patients accrue more and more information, especially of the type that used to be only in the hands of professionals, the patient-physician relationship is bound to be affected. In addition to the involvement of patients in accessing and creating electronic information, other developments that affect the relationship, with their attendant advantages as well as threats to privacy and confidentiality, include the electronic medical record and e-mail as a method of communication between patients and health-care providers.3Chi-Lum BI Lundberg GD Silberg WM Physicians accessing the Internet, the PAI project: an educational initiative.JAMA. 1996; 275: 1361-1362Crossref PubMed Google Scholar, 36Kane B Sands DZ Guidelines for the clinical use of electronic mail with patients.J Am Med Informatics Assoc. 1998; 5: 104-111Crossref PubMed Scopus (329) Google Scholar, 37Rind DM Kohane IS Szolovits P Safran C Chueh HC Barnett GO Maintaining the confidentiality of medical records shared over the Internet and the World Wide Web.Ann Intern Med. 1997; 127: 138-141Crossref PubMed Scopus (85) Google Scholar Legal and technical considerations have sometimes obscured a larger issue, that these developments "test the limits of conventional notions of [the] patient-doctor relationship", with the internet creating a "profound leveiing effect" in a relationship historically marked by an imbalance of power.38Podolsky DK Patients, gastroenterologists, and the World Wide Web.Gastroenterology. 1998; 114: 5Summary Full Text Full Text PDF PubMed Scopus (9) Google Scholar Despite concerns about patients' and physicians' abilities to manage exponentially increasing amounts of information, a shift to increased responsibility on the part of patients seems an inevitable accompaniment to an electronic world,1Kassirer JP The next transformation in the delivery of health care.N Engl J Med. 1995; 332: 52-53Crossref PubMed Scopus (171) Google Scholar one that has the potential to create a welcome patient-centred perspective. Internet enthusiasts see doctors and patients together consulting electronic resources in examination rooms,39Engstrom P Net-linked exam rooms open up new vistas for both MDs and patients.Medicine on the Net. 1997; 3: 1-4Crossref Scopus (4) Google Scholar physicians guiding patients to online support groups while educating them about the importance of validated, reproducible data,39Engstrom P Net-linked exam rooms open up new vistas for both MDs and patients.Medicine on the Net. 1997; 3: 1-4Crossref Scopus (4) Google Scholar, 40Peters R Sikorski R Digital dialogue: sharing information and interests on the internet.JAMA. 1997; 277: 1258-1260Crossref PubMed Google Scholar and the doctor-patient relationship being transformed through "informed shared decision making", a process that depends heavily upon electronic information resources.41Health Commons Institute Homepagehttp://www.maine.com/hci/links/abouthci.htmlGoogle Scholar The intersection of internet technology with personal interactions between professionals and patients is relatively uncharted but potentially rich territory, provided that informational exchanges are seen as secondary to the "formative interactions" that shape relationships.42Todorov T Letter from Paris.Salmagundi. 1996; 106: 3-7Google Scholar The electronic medium can then be appropriately harnessed to become not the driving force but a valuable tool in the service of enlightened, effective medicine. The role of journals in this process is clearly in evolution. Trends towards shorter, synoptic articles are doubtless incongruent with the addition of patients' stories to the medical literature. Nor can one easily imagine busy clinicians wading through enormously long and detailed electronic narratives. Yet, whether or not journals incorporate such narratives, patients are making themselves heard in abundance in the electronic medium. What these stories provide that traditional print narratives cannot is insight into the day-in, day-out, minute-by-minute, lived experience of illness. There is also evidence of the practical usefulness of electronic narratives. Support by readers caused one writer, a father whose son had leukaemia, to lobby successfully for a change in hospital policy about sedation for outpatient procedures.24McLellan MF The electronic narrative of illness.in: PhD dissertation. University of Texas Medical Branch, 1997Google Scholar And a neurosurgeon changed his approach to a surgical procedure on the basis of patients' complaints about scarring that he read in an online support group.43Hafner K The doctor is on.Newsweek. May 27, 1996; : 77-78PubMed Google Scholar These patients felt free to tell each other things that they, for whatever reason, did not feel able to share with their doctors. Because these narratives can clearly wield influence in clinical settings, medical journals ought to investigate creative, manageable ways to tap the power of patients' stories, ways that satisfy the needs of increasingly diverse audiences. The physician-poet John Stone once wrote, in a poem composed for the 1982 graduating class at Emory University School of Medicine, "For the patient's story will come to you like hunger, like thirst"?44Stone J Gaudeamus igitur.JAMA. 1983; 249: 1741-1742Crossref Scopus (5) Google Scholar These lines speak to the inevitability of story, and of the elemental need to communicate what is deeply felt, what is peculiarly ours. It is only natural, then, that stories of sickness have become fashioned to fit the electronic medium. The resulting marriage illustrates in abundance the strengths and weaknesses of a familiar narrative type and a new medium. For better or for worse, patients' use of the internet is a phenomenon that should not be ignored, but rather evaluated for what is most useful and relevant to medical journalism and clinical practice. Forms of media will come and go, and what is communicated in them will be shaped in part by these forms, but the urgent, human messages at the core-"there is always a person who surrounds the tumour",45Singh S Around every tumour there's a person.BMJ. 1998; 316: 560-561Crossref Scopus (1) Google Scholar as one patient with cancer remarked-remain the same. As medical journals ponder their changing roles in an electronic age, writers, editors, and readers ought to look beyond the level of our usual concerns, important as disease and the body are, to the fundamental truths spoken by the whole person in the total experience of illness. Patients and their stories insist upon this recognition, reinforcing the poet's notion that "… the final common pathway is the heart whatever kingdom may come For what matters finally is how the human spirit is spent…"44Stone J Gaudeamus igitur.JAMA. 1983; 249: 1741-1742Crossref Scopus (5) Google Scholar
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