UUUl Like hunger, like thirst: patients, journals, and the ...

THE INTERNET

N

ot surprisingly, patients, their families, and their friends are among the growing numbers of users of the internet and the worldwide web. In addi-

tion 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 deve!opment are

disease and illness. One survey in the USA showed that nearly half of adult internet users have recently accessed health and medical websites.6 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.7 " A spokesperson for the US Department

~ t I . ~ U L I I I L ~ , U U U l L ~ A L U d l d l l U ~ ? 0 . ~ l i r a , U.E

"Like h u n g e r , like thirst": p a t i e n t s , personal experiences of illness, and

e-mail lists dedicated to specific dis-

j o u r n a l s , a n d the i n t e r n e t eases and conditions. The internet also

serves patients as an emotional outlet

during crisis, and as a route of per-

sonal and group communication, in

ways that may powerfully affect rela= Faith M c L e l l a n

tionships between patients and

physicians.

Many journals are now online, and they report consid-

of Health and Human Services, which has recently

erable access by readers who are not medical profession-

updated its own government "healthfinder site", said,

alsY So, how do or should--the goals of journals

"Trying to get health information from the Internet is like

dovetail with the needs of patients, with whom journals

drinking from a firehose, and you don't even know what

share this new textual space? Because of its prominence in

the source of the water is". 1~Various standards have been

disseminating information about the state of the art in

suggested as guides to the assessment of internet informa-

medicine, the general medical journal of the future espe-

tion (panel), and many websites carry a statement about

cially may find 'itself at an uneasy intersection between

their adherence to such standards. 1~,~ T h e instruments

health-care professionals and the lay public. Both groups

used to assess quality have themselves been recently scru-

have pressing needs for information, but the public is not

tinised. 1?

the journal's primary audience. The public's increasing

A few studies have evaluated electronic medical

demand for information, though, suggests that journals'

sources. Culver et al, ]4 in their assessment of an online dis-

responsibilities may be expanding, as the need for quality

cussion group about painful hand and arm conditions

resources becomes ever more criticalY

associated with repetitive strain injury, concluded that

The influences on this shift in focus are many: the

most of the advice was given by people without medical

demand for information is driven by the media, by the

training, and a third of it was classified as "unconven-

"changing doctor-patient relationship created in an era of

tional, based on limited evidence, and/or inappropriate".

managed care and other economic pressures, and by the

Impicciatore and colleagues8assessed websites about fever

challenges physicians face in providing for their patients'

in children, comparing the online recommendations with

needs beyond diagnosis and treatment. More simply, elec-

guidelines published in a textbook of paediatric practice.

tronic resources are becoming important in virtually every

The content of the websites was rarely congruent with the

aspect of life, so why shouldn't health be affected by this

guidelines, suggesting that electronic resources must be

development? People who use the internet for everything

checked "for accuracy, completeness, and consistency"/

else see it also as a natural source of information about

One paediatrician has cautioned, though, that while his

patients' parents are often armed with inaccurate advice

t Associate )t and for the fogy at t he ]1 Branch . USA. She

obtained from the internet, they are also just as likely to obtain erroneous information from print media? ~

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. ]6 The purposes of 70 such inquiries,

degree in

almost all of which were germane to the topic, were to get

~fl~g.~n Hum v w ~ e rufe~L University,

help with diagnosis, to understand a prognosis or pre-

Winston-Salem, North Carolina, in 1982, and a PhD in

scribed therapy, and to get information about a disease or

medical humanities from UTMB in 1997; her dissertation

medication. Follow-up with a subset of 22 of these corre-

was about narratives of illness that patients and their families are writing on the internet. Dr McLellan is a contributing editor o f The Lancet, and is co-editor o f a literature and medicine series currently appearing in the joumat, for which she has written several articles.

spondents 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

Department of Anesthesiology, University of Texas Medical Branch. 610 Texas Avenue. Galveston, Texas 77555-0591, USA (e-maih mcletlan@utmb.edu)

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

THE LANCET 175 ? Vol 352 ? October ? 1998

Sli39

THE INTERNET

logistical and legal problems. Even less perilous measures,

however, suggest a new role for clinicians: "that of inter-

mediary between patients and the health-related informa-

tion they obtain from other sources".7

Medical journals may have related functions in the

interplay between patients and information, a fluid and

evolving type of public sphere? 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 innova-

tive designs and methods, to define "the web's clinical

role and the evaluation problems it raises".9Further, jour-

nals 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 arti-

cles, 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.17

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. ~8 Here the

electronic medium serves not only as a repository of infor-

mation 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 develop-

ment that clearly may have both egalitarian advantages

and aesthetic drawbacks. Traditional forms of patients'

stories, also known as pathographies, or narratives of ill-

ness, have usually been book-length, first-person print

works that have survived some form of editorial

scrutiny? 9-2~These accounts focus on the particular expe-

rience of individual patients and on their personal inter-

pretations 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. ~3'~4

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 narra-

tives. Unlike a book,

J ournals may do well to tailor information, in both print and

for example, an electronic narrative can include details of events that happened only minutes previously. The narrative,

electronic forms, to the

which can be constructed through the

ultimate recipients of

responses of an unlimited number of

the research they

readers in addition to the "primary" author,

publish...

can have many discrete parts, somewhat

like the chapters in a

book. Narratives on

web pages can also include links to other sites, thus creat-

ing 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?5This

potential for non-linearity, a narrative characteristic that is

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 "nform'ation PO "cy "n 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 commerc a nterests 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 al~1and Health on the Net Foundation.I3

not fully exploited in most computer writing, is nonetheless an important feature of hypertext, 25'26"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"7 7

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. 28,29Some narratives, in addition to communicating a personal story, also have didactic goals: they attempt

SII40

THE LANCET 175 ? Vol 352 ? October ? 1998

THE INTERNET

to educate readers about heart disease or options for

reconstruction after mastectomy or the process of organ

transplantation. 3?'31There is frequent evidence that narra-

tors have consulted the medical literature and that they

have also sought alternative or complementary therapies.

Many electronic narratives, unfortunately, are aestheti-

cally lacking, and serve more as catharsis than as art; oth-

ers 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. 32 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 pho-

tographs, 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

Home page of Cancer Destroys, Cancer Builds

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 mis-

From Byram S, Brodsky C. Cancer destroys, cancer builds. Cultronix, issue four, 1996. htt p://cult ronix/stephanie/ Site accessed April 24, 1998. Photographs copyright Charlee Brodsky. Text copyright Stephanie Byram. Website design copyright Shannon Ford. 1996. Reprinted with permission.

leading or erroneous information abounds can be disqui-

tion, find themselves regretting having hit the "send" but-

eting, to say the least. Electronic narratives reveal a

ton in the heat of the moment. In this way the virtues of

number of troubling legal and ethical issues, some arising

electronic communication are inextricably intertwined

from the nature of the medium itself, which seems at once

with its weaknesses.

both open and private. Participants often report that elec-

Questions of libel and malpractice may emerge in elec-

tronic correspondence feels intimate, even though the

tronic narratives, which often give specific details of clini-

communication can take place among vast and unknown

cal encounters, such as the recounting of conversations

audiences. Add to this mix the various forms of online

with named physicians. Sometimes the writers include

personae possible on the internet, especially with regard to

laboratory data or radiographic images as part of their sto-

pseudonymity and anonymity, and questions of identity

ries. It is not difficult to imagine how varying interpreta-

?nd veracity take on heightened

tions of all these aspects of

importance. 33 Are people online who they claim to be? How can or should their assertions be verified? Is it necessary to verify the

M ore troubling than the .degree of self-revelation in

clinical care could raise the spectre of liability.

Medical journals have recently debated the intricacies of consent

details and events described? Or

is it enough that these are, quite illness stories is the ethics of telling

to the publication of information about individual patients. 34

apart from verifiable facts, the

legitimate perceptions, feelings, another person's s t o r y . . . In most

Although journals have different practical reasons for concern

and reactions of patients? These

questions are confronted every of these instances, the question of

about this issue than do patients telling autobiographical stories,

day. in clinical practice, as

patients' subjective presentations consent is largely unspoken.

some issues, especially those related to exploitation and

are filtered through objective

manipulation, are the same. How

lenses.

do the ethical issues--those that

Some physicians have suggested that the degree of reve-

have to do with autonomy and respect for persons, for

lation in these stories may violate the confidentiality of the

example--differ when the patient, not the doctor, is the

doctor-patient relationship. Only the professional, how-

one offering the story? And what happens when the author

ever, is bound to keep the relationship confidential.

is not the subject? More troubling than the degree of self-

Patients are free to say whatever they wish, but whether

revelation in illness stories is the ethics of telling another

such disclosure is good practice may be another matter. It

person's story, as when a parent writes about the illness of

is critical to remember that the telling of patients' own

a minor child. In most of these instances, the question of

stories, even when replete with detailed personal informa-

consent is largely unspoken.

tion, is not new. What is new is the immediacy and the

Finally, psychosocial aspects of electronic narratives

extent of dissemination that the internet allows. Messages

may be just as complicated as the ethical issues. It is dis-

describing events that took place only moments previously

heartening, but unsurprising, that a new form of

may lie as close to authentic experience as readers are

Munchausen syndrome--"virtual factitious disorders"--

likely to get, but their authors may also, upon later reflec-

may be emerging, aided by the "unabashedly nurturing"

THE LANCET 175 ? Vot 352 ? October ? 1998

SII41

THE INTERNET

character of m a n y online support groups. 35T h e internet

The role of journals in this process is clearly in evolu-

tion. Trends towards shorter, synoptic articles are doubt-

"offers anonymous access to vast amounts of information on

less incongruent with the addition of patients' stories to

illnesses and support groups for even the rarest diseases,

the medical literature. Nor can one easily imagine busy

thus opening up a new world of opportunities for people

clinicians wading through enormously long and detailed

with the urge to pretend they are sick... The proliferation

electronic narratives. Yet, whether or not journals incor-

of newsgroups and chat rooms also offers a seemingly limit-

porate such narratives, patients are making themselves

less audience for tales of woe. Instead of wandering from

heard in abundance in the electronic medium. What these

hospital to hospital, people can click from one support group

stories provide that traditional print narratives cannot is

to another. Some, pretending to be ill, have joined more

insight into the day-in, day-out, minute-by-minute, lived

than one, and some sign onto a single group more than

experience of illness. There is also evidence of the practi-

once, using different names and acting out different roles".3s

cal usefulness of electronic narratives. Support by readers

caused one writer, a father whose son had leukaemia, to

These incidents again ask us to consider the importance

lobby successfully for a change in hospital policy about

of veracity, and they reinforce the need for readers to

sedation for outpatient procedures. 24A n d a neurosurgeon

bring interpretive skills to bear on patients' stories, skills

changed his approach to a surgical procedure on the basis

that balance critique with compassion and discernment.

of patients' complaints about scarring that he read in an

Knowledge is power, and power changes relationships.

online support group2,3These patients felt free to tell each

As ways of communicating change, and patients accrue

other things that they, for whatever reason, did not feel

more and more information, especially of the type that

able to share with their doctors. Because these narratives

used to be only in the hands of professionals, the patient-

can clearly wield influence in clinical settings, medical

physician relationship is bound to be affected. In addition

journals ought to investigate creative, manageable ways to

to the involvement of patients in accessing and creating

tap the power of patients' stories, ways that satisfy the

electronic information, other developments that affect the

needs of increasingly diverse audiences.

relationship, with their attendant

The physician-poet John Stone

advantages as well as threats to pri-

once wrote, in a poem composed for

vacy and confidentiality, include

the 1982 graduating class at Emory

the electronic medical record and e-

University School of Medicine,

mail as a method of communication

between patients and health-care

"For the patient's story will come to you

providers. 3'~6'37 Legal and technical

like hunger, like thirst"?4

considerations have sometimes

obscured a larger issue, that these

These lines speak to the

developments "test the limits of

inevitability of story, and of the ele-

conventional notions of [the]

mental need to communicate what

patient-doctor relationship", with

is deeply felt, what is peculiarly

the internet creating a "profound

ours. It is only natural, then, that

leveiing effect" in a relationship his-

stories of sickness have become

torically m a r k e d by an imbalance of Cancer Destroys, Cancer Builds: PhotoEssay 5 f a s h i o n e d to fit t h e electronic

powerY 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, 1one that has

Accompanying text: "After learning my story, many people glance at my chest almost despite themselves, making me fee] embarrassed and ashamed. Then we did the "Venus" photo. Like a Michelangelo sculpture with the arms knocked off and the head missing, I now see my torso as a work of art. Although I'm missing some pieces, I no longer feel disfigured. This image was a turning point for me".

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

the potential to create a welcome

what is most useful and relevant to

patient-centred perspective. Internet enthusiasts see doc-

medical journalism and clinical practice. Forms of media

tors and patients together consulting electronic resources

will come and go, and what is communicated in them will

in examination rooms, ~9 physicians guiding patients to

be shaped in part by these forms, but the urgent, human

online support groups while educating them about the

messages at the core--"there is always a person who sur-

importance of validated, reproducible data, 3s'4? and the

r o u n d s the t u m o u r " , 4s as one p a t i e n t with cancer

doctor-patient relationship being transformed through

remarked--remain the same. As medical journals ponder

"informed shared decision making", a process that

their changing roles in an electronic age, writers, editors,

depends heavily u p o n electronic information resources. 4'

and readers ought to look beyond the level of our usual

The intersection of intemet technology with personal

concerns, important as disease and the body are, to the

interactions between professionals and patients is relatively

fundamental truths spoken by the whole person in the

uncharted but potentially rich territory, provided that

total experience of illness. Patients and their stories insist

informational exchanges are seen as secondary to the "for-

upon this recognition, reinforcing the poet's notion that

mative interactions" that shape relationships. 42 T h e elec-

tronic medium can then be appropriately harnessed to

" . . . the final common pathway is the heart

become not the driving force but a valuable tool in the ser-

whatever kingdom may come

vice of enlightened, effective medicine.

For what matters finally is how the human spirit is s p e n t . . . "

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THE LANCET 175 ? Vol 352 ? October ? 1998

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