web 2.0: could it help move the health system into the 21st century?
TRANSCRIPT
Editorial
Amol Deshpande, MD,MBACentre for Global eHealthInnovation, UniversityHealth Network andUniversity of Toronto,Canada
Alejandro R. Jadad,MD, DPhil, FRCPCCentre for Global eHealthInnovation, R. Fraser ElliottBuilding, 4th floor, TorontoGeneral Hospital,190 Elizabeth Street,Toronto, ON M5G 2C4,Canada
E-mail:[email protected]
Online 31 October 2006
332 Vol. 3, No. 4,
ppWeb 2.0: Could it helpmove the health systeminto the 21st century?
Amol Deshpande and Alejandro R. JadadHow it is
One month had passed since Daniel noted the increas-
ingly painful wart on his penis. Too embarrassed to
discuss the issue with his 30-year old friends, he dealt
with his anxiety in solitude. He had been trying to get
a hold of his family physician for a week now by
telephone, but the lines were always busy. His after-
hours message still remained unanswered. His anxiety
level increasing, he turned to Google for an answer.
After getting millions of hits to his search query and
reading through numerous websites with varying
(and often conflicting) information, his panic heigh-
tened. Finally, the physician’s office called to offer the
earliest appointment in 2 weeks. Frustrated, Daniel
proceeded to the nearest walk-in clinic. After a pro-
longed wait and an awkward examination by an
unfamiliar female physician, Daniel was informed of
several possible diagnoses, including cancer, and
instructed to return to his family physician to obtain
a referral for an urologist, as soon as possible. Daniel
left the clinic, still filled with anxiety and his problem
unresolved. ‘There must be a better way.’ he thought.
Imagine. . .How it could be
Daniel had noted the increasingly painful wart on his
penis for a month. He was too embarrassed to discuss
the issue with his friends. His immediate reaction was
to turn to the Global Personal Health Information
Centre, a Web-based tool designed to support his
health needs. After logging in, he accessed his Personal
Health Record (PHR) from which he launched an
automatic search tailored to his profile and specific
query (penile lesions). After listening (Daniel had
difficulty absorbing text so his PHR defaulted to
audiovisual files) through the consistent quality infor-
mation specifically targeted at young men and review-
. 332–336, December 2006
ing multiple online images similar to his lesion, he
concluded that the most likely diagnosis was penile
cancer. Daniel was prompted by his PHR to answer a
questionnaire and upload images of his lesion for
review by his family physician. Following instructions
sent to him automatically by the Personal Health
Coaching System, Daniel used his hand-held digital
assistant to take samples of his lesion, uploaded them
to his record and sent an alert to his family physician’s
office for urgent processing (receipt was acknowledged
within a minute). A reply the next morning indicated
the digital samples had been forwarded to a derma-
tologist and an urologist for review. A provisional
diagnosis of squamous cell penile cancer was made
within 24 hours and Daniel was automatically pro-
vided with the names and locations of the two most
experienced and available urologists closest to him
who were most familiar with Daniel’s rare diagnosis.
After reviewing information about their profiles, com-
munication styles and satisfaction ratings provided
by other patients, Daniel chose the urologist most
suitable for him. After sending an electronic confirma-
tion, Daniel was scheduled for surgery within 3 days
in the emergency slot (his personal schedule was
checked in advance for availability by the intelligent
booking agent at the clinic). The procedure was
performed uneventfully as a day case, and he was
informed that the lesion was so localized that there
was no anticipated impact on his sexual life. Upon
discharge, the urologist who performed the surgery
had a conversation during which adjuvant treatment
options were addressed. As Daniel requested time to
think about them, he built an information prescrip-
tion in the recovery room with the urologist, that
included links to online support groups of men his
age with squamous cell penile cancer and to multi-
media resources on treatment options. Before Daniel
logged out of the PHR, he was automatically provided
with alerts for two recent studies published in the
� 2006 WPMH GmbH. Published by Elsevier Ireland Ltd.
Editorial
last 48 hours that could impact his future treatment
decisions. The articles (already reviewed and highly
rated by 60% of the members in Daniel’s online
support group) had been posted by patients who
had also been diagnosed with penile cancer. Satisfied
with his overall experience, Daniel posted his encoun-
ter on his blog (the new content was automatically
distributed to all members of his online support
group), rated his various provider encounters and
out of curiosity reviewed the feedback from his urol-
ogist with information provided on the Wikipedia
page on ‘penile cancer’. Noting some errors, he
quickly corrected them online. Daniel, though
exhausted, felt some comfort from the fact that he
could access high quality relevant information, had
been supported quickly by the health system, the
lesion had been removed and that he had an open
channel for communication with the clinical team,
and access to a valuable support group for the journey
that lay ahead.
The first scenario is all too recognizable by
most individuals familiar with the health
system. The second scenario could appear
futuristic and even idealistic until we stop
to consider that the technology to achieve
this model of health service delivery exists
today. What would it take to bridge the gap
between what we do and what we could do?
Enter Web 2.0
Web 2.0 is a term used to herald the second wave
of the World Wide Web, one that allows indi-
viduals to publish, collaborate and share experi-
ences with other like-minded individuals or
groups. Web 2.0 may simply represent new
jargon for what the Web was meant to achieve
all along [1], a marked contrast with what
happened during the first wave of Web devel-
opment, which was characterized by a hier-
archical structure (ruled by Webmasters)
offering static web sites broadcasted and dis-
tributed mostly through hypertext links.
Web 2.0 is already part of our mainstream
culture. A Google search in August 2006 of
‘Web 2.0’ yielded over 103 million hits. By
contrast, a search of Medline with the term
‘web 2.0.mp’ failed to provide even one docu-
ment. This dearth of information within the
biomedical literature motivated us to write
this article, as an attempt to introduce the
reader to Web 2.0 and its features, highlight-
ing its potential impact on health and the
health system, with an emphasis on men’s
health issues. Although not exhaustive, we
discuss some of the more practical features
of Web 2.0 that could, in the near term, sig-
nificantly impact the experience of patients
and providers.
Some of these features [2], which are all
about connecting people to people, could be
found in Web 1.0, but appear to be essential for
Web 2.0 applications that are already having a
major impact in most sectors of society.
Decentralization: moving healthinformation closer to the user
The power of Web 2.0 does not reside in any
one server, individual or organization. Instead
of relying on command-and-control mono-
lithic systems to generate value or efficiency,
Web 2.0 operates by allowing individual users
to interact with a site and affect its behaviour
based on a common set of low level rules. This
bottom-up rather than top-down approach is
notable in web sites such as Slashdot, a technol-
ogy news service that allows its members to
write, publish and rate technology stories
online. Using a few simple rules, members
decide which stories are the most interesting
and deserve high traffic, while they push
‘weaker’ stories to the bottom.
The power of decentralization in the health
system could enable providers and patients to
manage the information overload. As high-
lighted in the scenario above, patients could
automatically obtain current and potentially
relevant documents that could influence their
decision-making. More importantly, these
documents could be ‘filtered’ by peers, thus
providing greater significance and applicabil-
ity to specific contexts. Information rated and
‘approved’ by like-minded individuals could
prove to be more beneficial than the tradi-
tional top-down approach. It is not difficult
to envision a parallel system for health provi-
ders that could allow results of clinical
research, in fact, to be filtered by other provi-
ders (rather than by editorial boards) and
served up to members based on relevance
and suitability to practice settings and patient
profiles. This filtering system becomes even
more efficient and valuable as the amount of
available health information continues to pro-
liferate.
Vol. 3, No. 4, pp. 332–336, December 2006 333
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334 Vol. 3, No. 4,
User contribution: people sharing theirhealth experience and knowledge
The ability for users to provide new knowledge
that could enhance an existing service is not
exclusive to Web 2.0 applications. This feature,
best exemplified by Amazon’s book review and
other ratings services, has been very successful
in assisting consumers in the purchase of goods
and services. Several other commercial sites
have now embedded user feedback in an
attempt to engage users and improve their
services.
User-contributions in the health system,
which are now not only sparse but often dis-
couraged, could be used to transform consu-
mers and providers of health services into
‘virtual agents’. By promoting feedback at
the grass roots level we could obtain richer
and more accurate information quickly
regarding the quality, location and types of
services available for specific conditions. A
simple example could be a health provider
directory, with ratings of patient satisfaction
and guidance as to the most suitable provider
in a specific location. Providers could also
adopt similar systems to offer guidance to
other colleagues in choosing consultants or
peers with experience in uncommon or diffi-
cult cases, irrespective of distance or personal
relationship. As a result, anyone in touch with
the health system could carry a ‘virtual map’
drawn by others who have experienced the
battles and lived to tell the tales.
Another simple format to allow patients to
contribute and share their experiences and
help others is through the use of Web logs
(blogs). Early attempts to apply these con-
cepts to health are already being seen with
cancer patients through very successful
efforts such as The Cancer Blog, which is now
ranked amongst the top 500 blogs in the
world.
Network effects: finding andsupporting one another
Web 2.0 enables large numbers of individuals to
unite and collaborate around a common
resource. The most recent and notable example
of individuals congregating at a virtual site to
benefit from the network effect is MySpace. This
site enables individuals to create, post and share
personal information with like-minded indivi-
duals irrespective of gender, race, socioeco-
pp. 332–336, December 2006
nomic status or location. From its date of
inception 2 years ago, until August of 2006,
the site had logged 47.3 million members and
attracted an estimated 160,000 new users daily,
becoming the 5th most visited site on the Web
[3]. Flickr, YouTube and del.icio.us are also based on
the ability to share personal content and pre-
ferences with other individuals. In the case of
Flickr photographs taken by individuals can be
stored, shared and organized for others to view.
YouTube is similar, but involves videos, while
del.icio.us allows users to access, share and search
web browser bookmarks from anywhere on the
Web.
Harnessing these network effects in the
health system could be used to address concerns
of patients that are considered to be a low
priority by most health providers. Virtual com-
munities are a good example of this phenom-
enon. Patients can connect, communicate and
commiserate with like-minded individuals
across the street or across the world. Although
the benefits of virtual communities and electro-
nic support groups remains unclear [4,5], the
sheer number and longevity of on-line support
groups suggests that the majority of members
are obtaining benefit from this intervention [6].
Now sites such as My Cancer Place are using the
same tools to assist patients and expand their
social networks [7]. These social networks, in
turn, could encourage self-management and
help support newly diagnosed patients in crises
who have unanswered questions and face a
sometimes unsupportive and indifferent health
system.
Co-creation: collaborating to manageinformation overload
Web 2.0 allows users to contribute knowledge
in a collaborative fashion. A successful online
example of this phenomenon is Wikipedia, a
free online encyclopedia that enables anyone
with Web access to post articles on any topic,
edit them or challenge their relevance. In less
than 5 years, Wikipedia has grown to include
3.7 million articles in 229 language editions,
becoming by August of 2006 the 17th most
visited Web site on the Internet [8]. More
compellingly, though, is the fact that Wiki-
pedia, which relies on anonymous, unpaid
volunteers, seems to be as accurate in
covering scientific topics as Encyclopedia
Britannica [9].
Editorial
For health information, Wikipedia already
provides a valuable tool. The site contains over
27 subcategories in the disease section alone
with over 500 pages of user-generated informa-
tion. For example a query of ‘penile cancer’ on
Wikipedia yields page results informing the
reader on aspects including risk factors, sta-
ging and treatment.
The accuracy of websites involving numer-
ous individuals is not limited to Wikipedia. In
an unmoderated Breast Cancer Mailing List it
was noted that of 4600 postings, only 10 were
found to be misleading or false. Of these 10,
seven were corrected within 5 hours of the
original posting [10]. This ability to derive
accurate information from numerous mem-
bers and diverse data sets has been well docu-
mented and is not unique to Web 2.0 [11].
Leveraging the long tail of health:meeting the diverse demands ofpatients and providers
From an economic standpoint, the long tail
represents the numerous fringe individuals
and groups that are poorly served by compa-
nies because they do not fit the model of the
‘average’ customer. With Web 2.0 technolo-
gies, these groups are not only easily accessed,
but as a collective their numbers are signifi-
cant, and in some cases are even greater than
the mainstream [12].
The long tail has many potential applica-
tions within the health system. In our sce-
nario, Daniel quickly reached a tentative
diagnosis of penile cancer (rare condition),
obtained relevant quality information in his
medium of choice (multimedia rather than
traditional text based documents), identified
health providers familiar with his rare disor-
der and connected to a virtual support group
to help guide him through his time of crisis.
For patients located in a geographically
remote or isolated community, the benefits
of leveraging the long tail would only be mag-
nified while the shortcomings of the tradi-
tional health system become accentuated.
Some closing remarks
Since the mid-1990s, we have witnessed the
dramatic transformation of major industries
by information and communication technolo-
gies (ICTs). The introduction of online consu-
mer services has led to irreversible and
invigorating changes in very traditional sec-
tors, such as banking, entertainment, and
tourism. The health sector, however, somehow
remains trapped in the pre-Internet era.
At the dawn of the 21st century, most dis-
cussions about the role of ICTs to improve
health and the health system still revolve
around centralized electronic health records
under the control of managers, IT specialists or
health professionals, and designed to reinforce
inefficient processes that are clearly unsustain-
able. Most processes continue to consider the
public as the passive (and incompetent) reci-
pient of services, excluding it from priority
setting efforts, discussion on the relevance of
existing workflows and roles, or the allocation
of limited resources. In the outside world, and
particularly in the business sector, the patron-
ization of the public at the level that occurs
within the health system is not only passe but
tantamount to commercial suicide. Why
should the health system be regarded as
immune to the changes that are taking place
everywhere else in society? The answer
‘because it can’ is no longer valid. As consu-
mers (most of whom will eventually become
patients) continue to self-organize using Web
2.0 technologies, they will expect similar inter-
actions with the health system.
With Web 2.0, we now have an opportunity
to make amends. Although not presently con-
ceivable by most people, the day when health
care providers find themselves playing a bro-
kering or coaching role rather than simply a
supplier of medical services may be very near
[13,14]. The main message provided by efforts
such as Wikipedia, MySpace, YouTube and health-
related virtual communities like the Breast
Cancer Mailing List is that the public now have
the tools to manage knowledge, answer ques-
tions and find services in a way that is bypass-
ing and even exceeding the capacity of the
traditional establishment and its gatekeepers.
Some are even stressing the fact that those
belonging to the M (Millennial or Multitasking
or Multimedia) Generation (born between
1982 and 2000) are already tuning out their
predecessors, thanks to tools such as instant
messaging services, blogs and podcasts [15].
The power of these tools, however, pales in
comparison with what is emerging thanks to
Web 2.0 applications. Rather than becoming
Vol. 3, No. 4, pp. 332–336, December 2006 335
Editorial
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