Web Strategies for Health Communication (HCOM 512) Case Study Assignment


5 Νοε 2013 (πριν από 3 χρόνια και 9 μήνες)

50 εμφανίσεις

Web Strategies for Health Communication (HCOM 512)

Case Study Assignment

Prepared by: Katherine Perch

Date: July 18, 2010



For this assignment, I
to focus

the web strategies of three national

organizations that
reach out to a
variety of target audiences including patients, their families, healthcare providers,
researchers, volunteers and advocates for the purpose of improving cancer prevention, di
treatment, and patient experience and supporting research and advocacy efforts.
The three
organizations include the National Cancer Institute

, the American Cancer Society

, and the
Leukemia & Lymphoma Society


I chose to focus
on the web strategies of cancer
related organizations because I am currently employed
at Tufts Medical Center as a Research Associate and am working on a project aimed at developing and
testing a website to improve the health and quality of life of adult s
tem cell transplant recipients and their
caregivers (stem cell transplant is sometimes used to treat oncologic disorders). By focusing on cancer
related websites for this exercise, what I learn will be directly applicable to this project and I will be
er able to help our research team improve our own web strategy.

Case Study 1

Organization name:

National Cancer Institute

Website name and URL:


Staff involved in Web strategy, design, implementation, usa
bility, and marketing:

The s
taff within
the Office of Communication and Education (OCE)

responsible for developing communication
objectives, audiences, messages, and strategies
as well as

the results of these

is responsib
le for the


(including research and development of new
media), maintenance and evaluation of all NCI web

and related web
based technologies. Divisions
within the OCE that share responsibilities of the above tasks include the

of the Director
Communications Planning and Coordination Branch (CPCB),
Business Operations
Branch (BOB), and the Communications Technology Branch (CTB). Major components of these
divisions include:

Office of Public Information and Res
ource Management (OPIRM)

Office of Partnerships and Dissemination Initiatives (OPDI)

Office of Cancer Content Management (OCCM)

Office of Market Research and Evaluation (OMRE)

Office of Communications Services (OCS)

Organization background/budget:

National Cancer Institute (NCI) is
a nonprofit organization. It is
one of eleven agencies that compose the Department of Health and Human Services (HHS) under the
ional Institutes of Health (NIH).
NCI is the US Federal Government's principal agency f
r cancer
research and training. Though information on the budget designated for web
based communication
activity could not be obtained, data available on the Cancer.gov website indicated NCI’s annu
al budget

for 2009 was
$4.967 billion
. However, a large per
centage of this budget was allocated for research
grants and programs and much less was allocated for other activities, which I’m assuming includes
communication initiatives.

Organization’s mission:


mission is to
conduct and foster cancer research
; review and approve

aid applications to support promising research projects on the causes, prevention, diagnosis,

treatment of cancer; collect, analyze, and disseminate

related information, including
results of cancer research cond
ucted in the United States and i
n other countries; and provide

and instruction in the diagnosis and treatment of cancer.

Target audience
: The target audiences of NCI include the public, researchers, healthcare providers,
patients, and patients’
families and friends.

Primary competitors:
Based on commonalities in terms of mission
, organization size and reach, it
seems that the Leukemia & Lymphoma

Society (LLS) and the American Cancer Society (ACS) both
“compete” with NCI for being the primary o
rganization for the dissemination of credible cancer
information, and in the case of LLS, for the dissemination of research grants.

Web strategy to date to achieve this mission
The current web strategy

helps NCI to achieve its
mission to conduct a
nd su
pport cancer
provide education and training

in cancer detection and

related health information to vario
us target audiences.
NCI's umbrella
website, Cancer.gov, houses e
xtensive information

in English and Spanish

the prevention, diagnosis

of cancer

and funding opportunities
information on
current and past
cal trials, a clinical trial search tool, cancer
news, as well as links to other
d initiative
specific websites (cancer center online community (http://ncccp.cancer.gov),
epidemiology information (http://seer.cancer.gov),
social media sites, networking and data sharing tools,
and RSS feeds.

To contribute to the acceleration of cancer
research, the Cancer.gov homepage allows
researchers access to
an online tool that
enables cancer researchers to share research
knowledge and data.
To support the NCI’s goal of providing education and training to promote in
cancer diagnosis

and treatment, NCI provides a
based collection of teaching modules for health
professionals (PowerPoint and PDF downloads) and access to an additional clinical information database
physicians (PDQ
To further uphold their mission to provide canc
related news and information to
all audiences and connect researchers to funding and training o
pportunities, site visitors can subscribe
to the

NCI Cancer Bulletin

In terms of social media, users can easily access NCI social med
ia sites from the Cancer.gov
homepage. NCI publishes videos on two YouTube channels. One for the media, which includes videos
of expert interviews, and one for the remaining target audiences (health providers, public, patients
hosts videos to educate

viewers about the value of cancer research, including
clinical trials

that promote important NCI programs.
NCI also has several Twitter profiles relevant to different
audiences including the public, cancer patients, the media, researchers/scie
ntists and health
professionals. Valuable information is provided through various Tweets including announcements about
available funding mechanisms for researchers, cancer

or NCI
related news stories for health
professionals or the media, training opportu
nities for researchers and clinicians, and information on
coping and symptom management for patients and families. Additionally, NCI has two Facebook pages,
one brand new page for general audiences (launched July 9, 2010), and one for the media. Both
ook pages contain valuable information similar to the information provided through their other
social media sites and Cancer.gov (latest news, videos, research findings), and allow users to access
NCI announcements and news stories via wall posts, post the
ir own announcements or stories for other
visitors or NCI experts to read and respond to, and link to other NCI sponsored social media sites
(YouTube, Twitter) and websites, the
newsletter and news feeds. NCI also manages several RSS
feeds to appeal to di
fferent interests (i.e. cancer and NCI
related news feeds for public and media,
cancer topics/fact sheet feeds for patients, and clinical trial feeds for patients, researchers and
providers). Lastly, NCI has a LinkedIn account that lists NCI employees and

displays links to current
NCI news stories. It does not appear, after extensively searching Cancer.gov, that
NCI has any blog

NIH does have a website dedicated to videocasts and podcasts that may be of interest to NCI
constituents, though it isn’t easi
ly accessible through the Cancer.gov homepage.

Links to
Social Media Sites and RSS Feeds are easily accessible.

Screenshot of PDQ® Cancer Database for Healthcare Providers

In addition to Web, other ways of reaching t
arget audience:
To support research as well as the

and training of healthcare providers,
NCI hosts national and local conferences and publishes
magazines, such as
, and several scientific

These are available online as
l as in print. To promote awareness of cancer related topics, especially the importance of clinical
print materials (flyers, posters, fact sheets) tailored to researchers, health professionals and the
public can be downloaded online
(through the “
NCI publications” link on the homepage)
or ordered by
phone. Educational CD/DVDs and educational ‘kits’ are available for health professionals in topics such

talking to patients about clinical trials

Booklets, pamphlets, fact sheets and posters on cl
inical trials,
cancer research and general cancer prevention and treatment information written for lay audiences are
also downloadable online or available in print.
NCI links patients, providers and researchers to free
ated information and educat
ional materials
through the NCI’s Cancer Inf
ormation Service
(CIS). The CIS

information specialists are
trained to answer
about available NCI resources
, a live chat service
, and

Technology platform(s) used for Web site:
provides various target audiences with information
through a variety of platforms on their Cancer.gov website including a data sharing tool called “caBIG’,
based collection of teaching modules for health professionals (PowerPoint and PDF downloads),
to a diagnosis and
treatment database
for physicians (PDQ
a biweekly enewsletter called the
Cancer Bulletin
, and a 'Livechat' feature for NCI and cancer
related inquiries. Educational PPTs and
print materials for different audiences are avail
able for download through Cancer.gov’s “publications”
NCI does not appear to offer website visitors the option to subscribe to

specific podcasts,
videocasts or a blog. NIH has an extensive collection of videocasts and podcasts available to th
e public,
however, they are not easily accessible through the NCI website.

Tools or services used to measure usage, links to site, etc.:

The use

of social media sites is tracked
by a service provided by the sites themselves. For example, NCI is able to

check the number of
followers or “friends” they have on Twitter, Facebook and LinkedIn and the number of hits to their
YouTube channels just by visiting these sites. Information on the technology used for tracking usage of
the Cancer.gov website was not a

Number of registered Web users
and number of unique site visitors in 2009:

The cancer.gov
website does not give



option to register for an account. Unfortunately my many requests
(phone, email, 'Livechat') did not yield a response wi
th respect to the number of unique site visitors in
2009. However, I was able to get a sense of the site’s popularity, reputation and reach by visiting
Alexa.com. Alexa uses the “Alexa Traffic Rank” to measure site popularity. Cancer.gov was the second
ost popular website of the three sites being compared based on this ranking, which is calculated using
a c
ombination of average daily visitors to
website and
number of p
ageviews on
website over the
past 3 months.

Cancer.gov was also the second most

reputable site based on number of sites linking to
it but was the site with the most reach of the three, measured by percent of global internet users who
visited the site in the past month (0.013100%).

What are the mechanisms to solicit feedback and wh
at feedback is received directly from site
users through email or feedback form
NCI utilizes

up feedback survey called the “American
Customer Satisfaction Survey” to obtain feedback from site users.
The survey asks users

to rate
accuracy and qualit
y of available information, visual appeal of the site, ease of site use and navigation,
and satisfaction with the site. Users are also asked to provide feedback on the purpose of their visit to
the website, how often they use the site, and the likelihood o
f returning to the site or recommending the
site to others. NCI website visitors can also ask questions or leave feedback about the Cancer.gov
website via email or through an online contact form (

Have evaluations been conducted and with what results:
The Office of Communication and
Education is responsible for e

NCI’s web strategy. Evaluation activities include ongoing
implementation of
centered asses
sments of NCI websites, c
ollection of web metrics and analysis

seeking behaviors

Information on the exact results of these evaluation
activities was not available.

ial impetus behind Web presence:
Since 1971, when the National Cancer Act mand

the rapid
dissemination of information about cancer research to the public and the scientific community

NCI has
launched innovative communication initiatives including telephone
based information services and
online databases to further research,
cancer prevention and treatment and availability of information for
patients and families. For example, in 1975, NCI
Cancer Infor
mation Service (1
CANCER) and in 1983 the

Physician Data Query (PDQ)

database for physicians was available
When the Internet became a popular mechanism for information dissemination in the 1990s, NCI
followed their tradition of utilizing innovative technologies for information dissemination and launched
ancerNet, a computer
based information service


he Cancer.gov web

Timeline of how Web presence has evolved since initial launch (redesign and/or new features):

The first NCI website, CancerNet, was launched in 1995. A pioneer in web communication among the
government agenc
NCI published Web design and Usability Guidelines

for government websites in
They then created a web design and usability website (usability.gov
) in 2000.
They updated their
guidelines in

At that time, NCI had 130 websites across their ins
titution, maintained and managed
by 50 webmasters. Following the pu
blication of updated guidelines in 2002, NCI

launched a new
umbrella website, Cancer.gov, to replace CancerNet. The new web
site was designed to be more
visually appealing and its conten
ts were reorganized in a more user
friendly, intuitive way. For example,
information was rearranged by topic
a new search function enhanced site navigation

and the
Cancer Bulletin

newsletter became available. In 2004, Cancer.gov won a Freddie award f
or medical
media excellence and in 2005 the site won a Webby award. After 2004, NCI began to leverage the
power of new social media technologies to reach target audiences by adding YouTube channels,
Facebook pages, a LinkedIn account and several Twitter pr
ofiles to their web strategy. In fact, they just
created a general NCI Facebook page on July 9

2010. Unfortunately, I was unable to obtain
information on future web enhancements.

inks to press
blog posts (internal or external)
about web

NCI Announces New Web Design and Usability Web Site

December 13, 2000


NCI Announces New Research
Based Web Design Guidelines for
Improving Health Information Web Sites

May 3, 2001


NCI Launches Redesigned One
Stop Cancer Resource Web Site

22, 2002


National Cancer Institute Wins
FREDDIE Award for Its Web Site

November 8, 2004


SWOT Analysis of NCI Web Strategy



Large number of qualified staff dedicated
to communication initiatives

Access to usability.gov guidelines
developing user
centered websites
Several web
based mechanisms utilized
to disseminate information (online chat,
databases, search tools)

Accurate information (reviewed by board
of medical experts)

Social media , RSS feeds, enewsletter

Use of comprehensive user feedback
survey (American

Customer Satisfaction

Umbrella website visually unappealing

small font)

Not well organized to allow for easy access
to information relevant to a specific target



No user registration/account feature



based technology for patients &
providers available

Optimize use of social media
platforms to
meet the needs of

different target
iences (currently very research

other competing cancer
websites are available on the Web

Case Study 2

Organization name:

American Cancer Society

Website Name and URL:


Staff involved in Web strategy, design, implementation, usability, and marketing

he ACS
representative I spoke with d
escribed the staff involved in all aspects of web strategy as being
organized into a “federate model” with a national home office and 13 satellites nationwide. The
“trapezoidal brand” of the
American Cancer Society

as we
ll as the
business objectives

of all satellites
need to be represented through

website. The
Health Promotions

division is responsible
for developing communication content to achieve this goal
and “curating”

content, or ensuring content
and b
randing of the organization are accurately represented in publications of other individuals or
organizations. The Research Division is responsible for content related to research initiatives. The
Corporate Communications division

is responsible for “outbou
nd communications” representing the
American Cancer Society at large.

The Corporate IT division is responsible for the technical end of the
Cancer.org website, including site development and maintenance.

In collaboration with the Corporate IT
division and
other departments, the Interactive and New Media division is responsible for determining if
and what interactive and new media, including social media, is the appropriate channel for specific

The measurement/metrics team within this division is re
sponsible for website evaluation
including the management of usage data (user registrations, mean time on site and number of visitors)
and user feedback.

Organization background/budget:
The American Cancer Society is the nationwide, community
health organization
Information on the budget could not be released.

Organization’s mission

The American Cancer Society is

dedicated to eliminating cancer as a major
health problem by preventing cancer, saving lives, and diminishing suf
fering from cancer, through
research, education, advocacy, and service
.” Additionally, p
roviding the public with accurate, up
information on cancer is a priority for the American Cancer Society.

Target audience

The target audiences of ACS includ
e the public, patients, caregivers and families of
patients, healthcare providers, researchers, advocates, sponsors and volunteers

Primary competitors:

Again, based on similarities in terms of mission, target audience, organization
size and reach, it seem
s like the National Cancer Institute and Leukemia & Lymphoma Society are
primary competitors of the American Cancer Society. A Google search for “cancer information” yielded
the names of additional organizations with websites that compete with Cancer.org
for attention such as
MedicineNet.org, the American Society of Clinical Oncology website (ASCO.org), Cancer.net, and the
Dana Farber Cancer Institute website (

Web strategy to date to achieve this mission
ACS’s umbrella websit
e, Cancer.org
is available in
English and Spanish and includes
extensive inform
ation for patients, caregivers, families, healthcare
providers and the public on the prevention, diagnosis and

of multiple types of cancer
(including downloadable fact

sheets, videos), access to tips and tools for staying healthy and reducing
cancer risk (calculators, quizzes)
information on and tools for finding and paying for treatment and
support (including
searches for local facilities and links to a Cancer Support

Network with discussion
an overview of research accomplishments
and simplified cancer facts and figures.

useful tool for patients includes a Clinical Trial Matching Service where patients can take an online
survey and receive feedback abo
ut what clinical trials they are eligible for and how to contact associated
recruiting staff.

Users can easily navigate Cancer.org by
using an advanced search feature. Users can also
easily register for an account that will allow them to save preference
s and resources between site visits.
For convenience, the site gives users the option to register for an account using existing account ID
information such as Gmail, yahoo mail, AIM, Facebook, etc.
Website visitors interested in becoming
involved in the AC
S cause can utilize tools to facilitate participation in national and local advocacy
events or volunteer activities. Those interested in financially contributing to ACS can easily make an
online donation. For researchers, an overview of current cancer
ated research opportunities is also
available on Cancer.org.

In addition to information on Cancer.org, website visitors can access and/or subscribe to the
ACS News and Features

RSS feed through an icon in the middle of the homepage.
ACS also maintains

podcast series called
Powerful Choices

which supplies information

from medical professionals

(doctor’s, dieticians)
for patients to help them improve their health and reduce their risk of cancer.

has a blog
called “
Dr. Len's Cancer Blog”, a
uthored by
deputy chief medical officer, Dr. J.

Leonard (Len)
Lichtenfeld, MD, which
covers breaking cancer news and provides commentary on new research,
scientific developments, and other cancer breakthroughs
. T
o accommodate the media, ACS has a link
at the bottom o
f the homepage for a page called “Pressroom” that includes press releases, press kits,
contacts, biographies of organization executives, and other general cancer information resources (Dr.
Len’s blog, Powerful Choices podcasts). ACS also publishes several
enewsletters for different
audiences on topics such as
related legislative activities, volunteering, donating and participating
in events, healthy living topics, and ACS research programs.

Website visitors can access other ACS websites through the C
ancer.org homepage, including
More Birthdays.com
: a website for patients to find further information on staying healthy, finding
resources, and joining local advocacy events/initiatives; and


an advocacy website where
members can receive action
alerts for their local area, access a local calendar of events and local news
stories related to advocacy efforts, subscribe to a monthly advocacy
newsletter, and access outside
news stories and videos through several homepage links.

ACS also utilizes so
cial media to communicate to their target audiences. ACS has a presence
on Facebook, Twitter, YouTube and LinkedIn with different profiles for general audiences and for those
who want to follow specific ACS related initiatives. Through these social media p
latforms, patients,
health professionals and researchers can access ACS and cancer
related stories and breaking news as
well as information about ACS volunteer opportunities and fundraising and advocacy events and links to
other ACS websites, Dr. Len’s Blo
g and the
ACS News and Features

RRS feed.

In addition to Web, other ways of reaching target audience:

ACS publishes

STAY WELL books for
adults and children on healthy living, disease prevention, cooking, smoking cessation, and nutrition, as
well as GET

WELL books on cancer treatment, side effects, copin
g, care giving, and survivorship (can
be ordered online or via phone). T
bookstore also offers a number of books of interest to
physicians, nurses, dietitians, and other health professionals, fro
m comprehensive, evidenced
ent guides on cancer treatment to guide
books for onc
ology nurses and social workers and

atlases on cancer and tobacco use.

ACS publishes
medical and clinical journals for health
professionals and researcher
s. They also host community fundraising events, activities & programs
(galas, marathons, golf tournaments) to raise money and increase awareness of the ACS mission.

Technology platform(s) used for Web site:

Though I am very unfamiliar with technology plat
terminology, the ACS representative I spoke with informed me that the ACS technology platform was a

dot net platform with an
content management

system and
open standards for rich media (HTML
5) to allow for website accessibility through


Tools or services used to measure usage, links to site, etc.
Visits to social media sites are tracked
by a service provided by the sites themselves. For example, ACS is able to check the number of
followers or “friends” they have on Twitter,

Facebook and LinkedIn and the number of hits to their
YouTube channels just by visiting these sites. Measurement of Cancer.org usage is managed internally
the measurement/metrics team under the Interactive and New Media division within the American
ncer Society.

Number of registered Web users and

number of unique site visitors in 2009

The Cancer.org site
gets 23 million unique visitors per year. My contact was unable to provide me with the number of
registered users. According to metrics on Alex
a.com, Cancer.org is more popular and more reputable
than Cancer.gov and LLS.org and is a close second to Cancer.gov in terms of reach.

What are the mechanisms to solicit feedback and what feedback is received directly from site
users through email
or feedback form

ACS uses the same pop
up feedback survey mechanism as
NCI to solicit feedback from Cancer.org visitors. The questions asked are the same as described in the
NCI case study. In addition to the survey, t
o get feedback on specific pages,
ACS imbeds a

question at the bottom of each
Cancer.org web
page that asks “was this information helpful?”

hen a
user clicks on an answer, a few more questions about their use of that p
age and information are asked.
seems like it would be very
seful for providing feedback on specific pages or functions within the
overall website.

It is also possible for users to leave website
related feedback through email.

Screenshot of User Feedback Survey

Have evaluations been conducted and with what re

Cancer.org is evaluated based on user
feedback and usage data, such as “mean time on site” and number of site visitors. The ACS
representative was particularly excited to report that recent feedback about the newly redesigned
website, which was on
ly launched 2 weeks ago, has been positive with regard to content and that the
“mean time on site” and number of visitors to the site have both increased.

w was the name, tagline, logo, and branding developed? By Whom?:

Information on the
development o
f the website name, etc. was not available but the ACS representative did explain that
Health Promotions

division is responsible for ensuring content and branding of the organization is
accurately represented in communications published by ACS and exte
rnal parties.

Initial impetus behind Web presence:


first launched Cancer.org in 1996 as a simple tool to
access cancer
related information. With the birth of the modern internet around that time period, g
online was a natural move to allow those

who were using this new
communication platform

to access
information about cancer diagnosis and treatment.

Timeline of how Web presence has evolved since initial launch (redesign and/or new features):

To enhance the ability of ACS to leverage new web
technologies to disseminate cancer
information, RSS feeds were added in late 1990s, followed by blogs, and then “microblogging” such as
Twitter and Facebook in the early to mid 2000s.
A new Cancer.org was launched in June, 2010.
ludes b
etter search engine technology and
an updated look
The original
information feature on cancer prevention and early detection, diagnosis

and treatment, survivorship, and

still exist

but is now more organized

for easier navigation

Screenshot of Cancer.org prior to launch of redesigned site

in June 2010

Screenshot of redesigned

, launched in June 2010

Features that have been identified as importan
t or that people are requesting
The new
g websit
e launched in June has several new features which were added in response to user


and requests.
Two examples include
the addition of “
ACS Account” which is the user
registration tool that utilizes a “single sign on system” to allow users to

register with existing Internet
account ID information (
), and the addition of localized content to
accommodate ACS volunteers, who identify as being a member of their local community (e.g., event
calendar to search for local events)

What could be done with an
ited budget

Given an unlimited budget, the representative I spoke
with at ACS would put the following three items on his web strategy “wish list”:


“Unified Multi
Channel Approach” to their web strategy (web,
social med
, mobile) to allow
users of on
e platform to transfer to
content on another platform easily.


The creation of a “GO Aware” mobile application to enable local, available volunteers to connect
with and arrange to meet

up with patients in need of in
person ad
vice or support.


A real time network of healthcare providers and other constituents to “share a rich media
experience” (meet online or chat via online chat feature, mobile application, etc.). This would
ideally allow patients to access information/advic
e/support from volunteer experts in a
convenient way.

inks to press
blog posts (internal or external)
about web
/web strategy

A New Cancer.org is Coming

June 21, 2010


SWOT Analysis of
Web Strategy



䱡r来 湵m扥r ⁱ 慬ifi敤⁳瑡tf
摥dic慴ad⁴ ⁣潭m畮ic慴ao渠nniti慴iv敳


s散瑩潮 &


䱩湫s⁴  h敲⁁eS 睥扳ites⁥ sily


啳攠ef⁳敶敲el we戠b散h湯l潧i敳⁴
潮li湥⁤ 湡ti潮sⰠ牥,o畲u攠fi湤敲eⰠ

S潣ial敤i愠ai瑥tⰠ,lo本gpo摣慳瑳⁡ 搠
newsletters and online chat feature not
accessible through homepage

All⁲敳潵rc敳⁦潲⁨敡l瑨t慲a⁰牯 i摥rs &
r敳敡rc桥rs⁤ ffic畬琠瑯⁦ind

䍬i湩cal⁔ri慬⁍慴a桩湧 S敲vic攠eiffic畬琠瑯
l潣慴a 睥扳i瑥



li湫⁰ ti敮瑳⁴漠v潬畮t敥rs⁡湤⁥ p敲琠
慤vic攠er潭⁨ 慬瑨t慲攠灲pvi摥rs

r敳敡rc桥rs⁡ 搠桥al瑨t慲e⁰牯 i摥rs

Sev敲el 桥r⁣潭灥瑩湧⁣a湣敲
bl攠e渠n桥 W敢

Case Study 3

Organization name:

The Leukemia & Lymphoma Society

Website Name and URL:


Staff involved in Web strategy, design, implementation, usability, and marketing:
A Chief
Information Officer
is responsibl
e for overseeing

the overall technology strategy, delivery, and
rvices for LLS. The major responsibilities of the CIO include technical infrastructure and
Web &
Applications developmen
t. The CIO also oversees the evaluation and implementation of em

technology opportunities
. The Chief Marketing & Revenue Officer (CMRO) provides
egic direction
and leadership to

the organization

s marketing


resource development

operations. The CMRO
leadership in
the development of
strategic plans

order to drive integration, cohesion and
synergies across all marketing and fundraising disciplines

[including web marketing]
, and across the


Also included in the major
of the CMRO is the coordination of
The Seni
or Vice President of Patient Services also contributes to the LLS web strategy. This person

provides strategic direction and oversees the development, guidelines, evaluatio
n and operations of
patient and healthcare professional services programs,

of which are delivered on the web,
disease specific patient publications & Web pages.

Organization Background & Budget:

The Leukemia & Lymphoma Society (LLS) is a nonprofit charity
organization with 68 chapters in the United States and Canada. It
is the world's largest voluntary health
organization dedicated to funding blood cancer research and providing education and patient services.
In addition to funding research,
LLS also provides f
inancial assistance to patients,

sponsors scientific

ces around the country,

produces e
ducational materials and videos,

and runs dozens of

Support Groups nationwide.

The LLS b
udget in 2009 for the entire organization was
, and
was divided

rogram expenses (74.5%)
, administrative e
penses (7.8%),
and f
. The exact budget for their web strategy was not available.

Organization’s mission:


mission is to cure leukemia, lymphoma, Hodgkin's disease and
myeloma, and improve the quality of life of patients and the
ir families

by funding and supporting the
conduct and participation in research and connecting patients, families and caregivers to expert
information and support

arget audience:
The target audiences of
LLS include patients
caregivers and their famili
healthcare providers,
volunteers, advocates
, researchers, and sponsors.

Primary competitors:

Aside from the National Cancer Institute and the American Cancer Society, other
charities with similar missions listed with the LLS profile on the “Charity N
avigator” website include
Alex's Lemonade Stand Foundation

, CancerCare

, Skin Cancer Foundation

, Children’
Cancer Center (FL

Web strategy to date to
achieve this mission:
The organizat
ion’s website, LLS
.org, houses
cancer specific
information for
various target audiences in English, French, Spanish and Portuguese.
The website is neatly organized by target audience, which makes for easy navigatio
n. In the “Patient
Services” and “Disease Information” sections of the site, patients and families and healthcare providers
are provided with information on different blood cancers; connection to support including an online chat
feature, an online communi
ty with discussion boards, a local support service locator, a tool to connect to
a volunteer survivor; online tools to aid in care management (treatment locator, medication manager,
appointment calendar); online registration for education programs includin
g free webcasts and free
downloadable educational print materials; access to monthly e
newsletters, RSS feeds, a blog and
podcasts. T
blog, launched in January 2008 (
), is

updated regularly
with news from LLS and guest blog posts

including patient stories, research findings and advocacy
To facilitate
awareness of and
participation in clinical trials, the LLS main website links to
clinical trial search engine call
Trial Check

Two sections of the website are dedicated to sponsors and advocates. To encourage donations,
information is provided on how to donate and how to participate in fundraising events. LLS also has an
store with various LLS merchandise for p
urchase. Sponsors can also send free e
postcards from the
website to a friend to encourage more
people to join the LLS fundraising effort. Users interested in
being an advocate for LLS related causes can join an
Online Advocacy N
etwork, access tips and
ources to help them learn how to be an effective advocate, and find local advocacy events and local
legislators through search tools.

To further encourage visitors to get involved in promoting the LLS
LLS maintains other websites
devoted to specif
ic fundraising events and local LLS chapters.

A section dedicated to researchers
and health professionals
enables interested scientists to find
funding opportunities,
nurses, physicians and social workers to
seek out professional education
nd provides easy access to medical
literature through PubMed
. To increase awareness
of LLS, t
he homepage
includes a
link to a webpage called
“pressroom” where interested journalists can
access archived press releases
, enewsletter issues and reports
, event
and calendar listings, LLS media
relations contact information as well as
current and past
news stories through a link to the LLS


In terms of social media, LLS has a Facebook page and two Twitter profiles, one for general
audiences and one
Team In Training

event participants to access
fundraising, training, nutrition,
health and fitness information.

channel, created in 2007, hosts videos from LLS
fundraising events as well as LLS and cancer
related PSAs. LLS also has a Linke
dIn profile. These
accounts are all updated regularly, use a variety of tools to engage audiences (discussion boards,
videos) and link to other LLS resources (blog, websites, other social media presence). These social
media resources are well utilized to
provide patients, families, advocates and volunteers with LLS
related information as well as an opportunity to share knowledge and support with one another.


addition to Web, other ways of reaching target audience:

To fulfill their cancer education
goals, LLS sponsors national webcast and teleconference blood cancer education programs and
based education programs for patients, caregivers and healthcare professionals. They also
provide access to an Information Resource Center (IRC), a
in service where patients and caregivers
can get individualized information from experts to help them navigate treatment, clinical trial options and
support services. To meet
fundraising goals,
LLS sponsors fundraising events like triathlons, half
athons and walks and galas as well as school
based fundraising programs for youth.

Technology platform(s) used for Web site:

Website visitors are provided with several platforms to
access cancer
related health information and support including a live cha
t feature, discussion boards,
support group search tool, online care management tools (medication manager, appointment calendar),
downloadable informational and educational materials (in English, Spanish and French), educational
webcasts, online educationa
l program registration, access to monthly e
newsletters, RSS feeds, an
online advocacy network, electronic advocacy alerts, LLS event calendar tool, a blog, and podcasts.

Tools or services used to measure usage, links to site, etc

As mentioned previously

for NCI and
ACS, visits to social media sites are tracked by a service provided by the sites themselves. I was unable
to obtain information from LLS on how they track usage of LLS.org.

Number of registered Web users and number of unique site visitors i
n 2009:

I was unable to obtain
this information from LLS despite
phone calls, emails and live chat inquiries.
According to
metrics on Alexa.com, LLS.org has 563 sites linking to it and .00069 percent of global internet users
have visited the site
in the last month.

What are the mechanisms to solicit feedback and what feedback is received directly from site
users through email or feedback form:

An email address is available on the homepage for site
visitors to use for general website inquir
ies and comments, including website feedback.
Unlike NCI and
ACS, LLS does not have a feedback survey available to website users.

Have evaluations been conducted and with what results:
According to annual reports between 2000
and 2009, LLS has signific
antly increased extension of information and services to patients, caregivers
and their families, which they measure by counting ‘patient contacts’.

Though impact of the web strategy
itself in increasing ‘patient contacts’ was not cited, the website is a m
ajor component of the LLS
Information Resource Center (LRC),

which provides individualized information to patients and their
caregivers about blood cancers, resources and tre
. It is clear from reviewing website content
and reading press releases and

annual reports that providing information to constituents through this
service has
contributed to

the increase in contacts

Timeline of how Web presence has evolved since initial launch (redesign and/or new features):

Leukemia & Lymphoma Soc
iety launched their website in

LLS updated their website in 2001
as new Internet capabilities became available. Updates included the option for visitors to create
customized user profiles, register online for advocacy, fundraising and other LLS progr
ams, and an
option for LLS chapters to customize individual chapter websites tailored to their individual objectives
and activities.

An online chat feature was added to LLS.org in 2004.
In January 2009 LLS launched a
new website to coincide with the organ
ization’s 60

birthday celebration. The new site highlights
research accomplishments and offers new patient resources such as
My Personal MDS Journey
, a
personalized and interactive program that follows the story of a cancer survivor and his caregi
ver. In
March 2009, a new web tool called
Trial Check

search engine

an earlier

clinical trial
search tool.

TrialCheck is updated on a daily basis with new information.

Lastly, in April 2009, LLS
launched new webpages for accessing information on LLS National Education Programs. The new
pages “ad
d a fresh new look” and were designed to make navigation easier. The most recent change to
the LLS web strategy is the addition of the LLS Community and CarePages websites. Patients and
Caregivers can now participate in discussions via the online community

and can

set up an LLS
CarePages site to enable them to share stories, upload ph
otos and update family/friends on their status

New LLS.org W

Awards Received.
The LLS website has received numerous awards including Best Professional Web
site by
a Healthcare Association/Professional Society and Best
Patient Education Web

site by a
Healthcare Association/Professional Society, awarded by the Health Information Resource Center
(HIRC). It also was named a global finalist in the 2001 International Hea
lth & Medical Media Awards
competition, known as the FREDDIE Awards, sponsored by Time Inc. Health.

inks to any press or blog posts (internal or external) site:

Launch of New LLS Website

January 2009


SWOT Analysis of
Web Strategy



Website information and features
organized by target audience

Several web technologies used to
achieve mission (websites,
online chat
discussion boards, social media,
podcasts, etc.)

Seals of approval displayed to
communicate credibility to visitors

Homepage very crowded

Links to ot
her LLS sponsored websites and
social media sites aren’t easily accessible

No website user feedback survey

Do not optimize use of social media for all
target audiences



Comprehensive website user feedback
surveys have been developed

and are

Several other competing cancer
websites are available on the Web

omparison of Approaches

Although the missions of NCI, ACS and LLS are all slightly different, with NCI being more science
focused, ACS more patient focused,

and LLS somewhere in between, the three organizations do share
common goals. They all aim to improve cancer prevention, detection, treatment and patient quality of life
by disseminating reliable information, providing education and training opportunities
and supporting
cancer research. I’m happy to say that all three of these organizations have developed a web strategy
that takes advantage of a wide variety of web
based technologies to help them achieve these goals.

Information Dissemination.

As mention
ed previously, connecting patients and their families,
healthcare providers, researchers and the public to comprehensive and credible cancer
information is common to the missions of NCI, ACS and LLS and each organization uses a variety of

technologies to do so. All organizations have easily accessible information related to cancer
prevention, diagnosis, treatment and care management available on their website and through
downloadable materials (PDF, PPT) and multimedia resources (videos,
audio). Each organization also
has an online chat feature on their website enabling cancer patients and their caregivers to easily
access a cancer information specialist to help connect them with additional resources. To further fulfill
their role in faci
litating the connection between patients and the best possible cancer treatment, each
organization provides a treatment locator search tool and a clinical trial search tool on their main
website. Information about current cancer research and new research
opportunities are also easily
accessible on each organization’s website. All organizations also provide website visitors with the
opportunity to subscribe to RRS feeds and enewsletters to stay connected with the most up
news, information and oppor
tunities related to cancer prevention, treatment, research and advocacy.
ACS and LLS also provide their constituents with access to this information through blogs and podcasts.

To further facilitate the dissemination of cancer
related information, each o
rganization makes an
effort to communicate to their website visitors that the information they provide is credible. Each site has
an “About US” section that provides background on the organization and explains the organization’s
mission. Each organization
also displays words or a logo of all of the website’s sponsors. Additionally,
the Better Business Bureau & Health On The Net seals of approval are displayed on ACS and LLS
websites to further reassure users that information retrieved from these websites i
s accurate and of high
quality. All three organizations also clearly display contact information, including a phone number, email
address and physical address for visitors with website questions/concerns.

Education & Training
. In terms of providing ed
ucation and training opportunities to patients,
healthcare providers and researchers to facilitate better cancer prevention, treatment and research,
each organization offers website visitors the opportunity to download educational materials, access
onal videos, view content on web
based and non web
based education and training
opportunities, and register for education programs online. Though I could not find specific information on
based education programs sponsored by NCI, ACS and LLS offer vari
ous education programs for
patients and healthcare professionals via Webcast (some free of charge).

Treatment & Support

To contribute to the improvement of patient quality of life, ACS and LLS provide
cancer patients and their families with opportuniti
es for support from cancer experts, other patients and
volunteers through discussion boards and online communities. NCI does not manage patient
online community or discussion boards but this may reflect their less patient
centered mission when
mpared to the other two organizations. NCI does, however, strive to improve patient care through
research and utilizes similar online networking technology to facilitate the sharing of knowledge and
data across research institutions and individual scienti
sts. NCI also offers physicians access to a clinical
data sharing tool to advance cancer diagnosis and treatment.


To increase financial support for the advancement of cancer prevention,
treatment and research, ACS and LLS provide t
heir website visitors and registered users with access to
event calendars and online registration options to facilitate communication about and participation in
organization sponsored advocacy, volunteer and fundraising events. Since NCI is funded by the
overnment and does not need to solicit donations or promote fundraising activities, these technologies
are not part of their web strategy. ACS and LLS also offer web
based tools to increase involvement of
the public in cancer
related initiatives. Online a
dvocacy networks, electronic advocacy alerts and
advocacy related search tools (legislator locator, event finder) enable website visitors to get involved.
Again, NCI does not offer these resources as advocacy is not a central part of their mission.

ite Evaluation.

To enhance website user experience and ensure fulfillment of the goals of the
aforementioned web
based information, resources and tools, both NCI and ACS use a standard pop
customer satisfaction
user feedback form on their website

as a
mechanism for collecting feedback from
users about their website experience. The survey asks about quality and accuracy of website
information and asks the user to rate the appearance, usability and functionality of the site. In addition,
ACS has imbedded

a feedback mechanism on each page of its website to allow for a more
comprehensive, customized website evaluation. NCI does not ask for page specific feedback, which
may make it more difficult to evaluate specific website features. LLS does not appear to

use a
standardized assessment to solicit feedback from users but instead suggests users use email or an
ended contact form to submit website
related feedback or suggestions.

Website Design.

Despite the success of these organizations in providin
g quality content and useful
tools to their target audiences, a few of the websites need improvement in terms of organization and
visual appeal. Both NCI and ACS organize their website by topic, under
five or six main section
headings across the top of th
e page.

The information on the LLS website, however, is organized by
target audience and, in my opinion, makes the site a lot easier to navigate. For organizations that have
several target audiences that may be looking for information only relevant to the
m, this design may be
the best option. For example, if I’m a physician looking for professional education opportunities, I can
go straight to the “professionals” section of the LLS website but would have to search longer on the
other two websites to find
what I’m looking for. In terms of site “look and feel”, the C
homepage is much less

crowded than

Cancer.gov and LLs.org and much more attractive. The use of
links on the Cancer.org homepage is maximized to keep text to a minimum and the text that

is visible is
displayed in a readable color and font size. Both of these features improve site navigation and appeal.

Social Media.

In addition to utilizing

websites as a communication
each organization uses

social media to reach target audie
nces and promote the
ir mission and the

aforementioned informational,
educational and supportive resources

they provide
. Each organization has a presence on Facebook,
Twitter, YouTube, and
LinkedIn. The American Cancer Society and LLS both optimize the use

of social
media to meet the needs of most of their target audiences. They each update their social media profiles
regularly and make use of a variety of tools to engage audiences (discussion boards, videos) and link to
other organization sponsored resour
ces (blog, websites, other social media presence). These
organizations are successful in using social media to provide patients, families, advocates and
volunteers with relevant information and an opportunity to exchange knowledge and support. However,
he use of social marketing channels by these organizations to satisfy the needs of healthcare providers
and researchers is minimal. NCI also optimizes their use of this technology to promote their organization
and available resources. Most of their content
, however, is research and science
focused and
may not
appeal to healthcare providers, patients or their families

Although NCI is newer to
the social media world
than ACS and LLS,

they manage and market

their social media presence better than the other
two organizations. Users can easily access NCI social
media sites and RSS feeds from the Cancer.gov homepage. There is also a Cancer.gov New Media
webpage that lists their different social media profiles and RSS feeds with descriptions of each so that
ious target audiences can
quickly and easily
access information relevant to their


Recommendations for NCI

eorganize information on Cancer.gov

by target audience
On the Cancer.gov homepage, there are
six section

headings across the top of the page and several subsections under these headings. The
information under the subheadings seems unorganized and in my opinion, makes the site hard

It’s hard to tell w
hat information is for patients vs. researcher
s vs. health professionals vs.

public or media.
Although NCI might organize information this way because they don’t want to restrict
information access to certain audiences, with an organization that has several different audiences with
different canc
related knowledge levels and interests, site navigation and usability might improve if
they organized information under the umbrella of a specific target audience.

Create NCI Social Media sites for narrower audiences.
In addition to organizing Cancer
information by target audience, d
elivering information through social media channels by target audience
may enhance user experience and ability to access helpful information. For example, there are only two
NCI YouTube channels, one for the media and
one for everyone else (public, health professionals,
patients/families, etc.). There should be a separate YouTube channel marketed for patients & families
with relevant educational/informational videos about diagnosis, treatment, coping, etc., and another

channel for researchers with science
related education/training videos, videos explaining the funding
opportunities and application process, etc.
NCI has been able to diversify their Twitter profiles and RSS
feeds for these various audiences and should f
ollow his model for a
ll social media technologies. With
health information dissemination a main goal of NCI, it is important not to just make the information
available but also easily accessible.

Make Cancer.gov more visually appealing.
In my opinion,
the Cancer.gov website is crowded with
too much text, the text is too light in color, too small and the design/colors of the site as a whole are dull.
The Caner.org website should be an example for NCI to follow because it is much less crowded than
.gov and is much more attractive because it uses bolder colors for its section headings, larger,
darker text, and a banner of rotating photographs under the sections headings for additional visual
appeal. I would suggest Cancer.gov make similar adjustment
s to their website to increase appeal and
minimize the chance of overwhelming websi
te users with too information at once.

Link to NIH videocasts/podcasts relevant to NCI constituents
Although NIH offers “excellent
videocasts and broadcasts” according

to my mentor who is an oncologist
and cancer
Tufts Medical Center,
NCI does not have a link on their website through which website users can easily
access this resource. NCI should add a link to this resource on the Cancer.gov homepage and t
o their
New Media webpage. It would also be helpful for NCI constituents to have the ability to subscribe to
only cancer
related casts via Cancer.gov in order to avoid having to search through all of NCI’s casts to
find ones that are relevant to them.

reate blogs for different target audiences
I was
unable to find any NCI

blogs via the Cancer.gov
homepage or by searching for “blog” using the
search function.

This is a medium used by the
other two organizations to deliver NCI and cancer
ed news, stories and announcements to their
target audiences. NCI’s use of Tweets and RSS feeds to deliver this type of information to their target
audiences is impressive and I think it would benefit them to create a general NCI blog, and/or separate
s for healthcare providers, researchers and patients to further reach their information dissemination,
education and training and research
related goals.

fer access to e
ed web
As part of my position as a Research Associate
at T
ufts Medical Center, I have recently been doing a lot of literature searching for evidence
technologies aimed at improving health outcomes and quality of life for cancer patients and their
There is

some evidence behind certain web
ogies (websites,

based tools,
mobile applications
) that have
been effective in this regard. Since it is quite possible that NCI is funding
a lot of this research, it would be worthwhile to them to have a way for patients and their providers to

access these resources via Cancer.gov, whether it be through links to third party websites or a
listing of the available technologies with contact information for the person responsible for public
dissemination of the technology.

Allow users to registe
r for a Cancer.gov account.
This feature is available on the ACS and LLS
I suggest NCI adopt this feature as well to make information gathering and website
for users
more convenient by enabling them to
sign up for email alerts

one place and save preferences and previously accessed resources across website visi

Evaluation of specific
o get feedback on specific pages,
the American
Cancer Society posts

a survey question at the bottom of each


of their website

that asks “was this
information helpful?”

hen a user clicks on an answer

to this question (yes or no)
, a few more
questions about their use of that page and information
found/not found are asked. I think evaluation of
certain websit
e features and pages is valuable in terms of making site updates more efficient and
making sure updates not only address feedback about the site as a whole, but and about specific
features as well. I suggest NCI add this evaluation feature to all Cancer.go
v webpages.

Recommendations for American Cancer Society

Enhance accessibility to all web
based communication technologies through Cancer.org.
American Cancer Society is successful in optimizing social media
and other web
, including
sts, blogs, enewsletters and an online chat feature,
to reach t
arget audiences. However, to
maximize the impact of communication efforts, it is

important to make sure communication channels
easily accessible. Therefore, I would suggest ACS add links to

their social media sites, blog, podcasts,
newsletters and online chat feature to the Cancer.org homepage, and/or

these resources on
page with des
criptions of associated content as is done by NCI.

Reorganize information on website

target audience.

Although navigating through the information
on Cancer.org is easier than it is on Cancer.gov, it could be made easier. Like on Cancer.gov,
there are
six section headings across the top of the page organized by topic, and again, it’s hard
to tell w
information is geared toward different audiences (patients vs. researchers vs. health professionals). I
recommend ACS follow the lead of the Leukemia & Lymphoma Society and reorganize information by
target audience or add an option to view onl
y information relevant to a specific target audience through
an additional navigation bar.

Improve accessibility to

Clinical Trial
Matching Service
From what

I’ve read in the medical
literature, it seems that
information about
clinical tr
ls is extrem
ely important to
patients and
Therefore, it is no surprise that all

three of my case study organizations

have clinical
trial matching

services. However,

accessing the online service through Cancer.org is difficult. I had to
call th
em to have an information specialist walk me through their website to access the page where it
was hiding. I
t should be a major priority of the American Cancer Society, with part of its mission being
to enhance cancer treatment
and research,
not only to p
rovide constituents with clinical trial information
and services, but to effectively guide them to these resources. I would recommend that they put a link
to the clinical trial matching service on their homepage and on their Facebook page.

Optimize use
of RRS feed technology
. It appears that ACS only has one RSS feed. Given the
extensive use of this technology by their competitors (NCI and LLS), I would suggest they optimize the
use of this technology to enhance communication with constituents by creatin
g more feeds, including
feeds specific to various target audiences (patients, caregivers, healthcare providers, researchers).

Create ACS Social Media sites for healthcare providers and researchers.
The ACS Facebook page
and YouTube channel for general a
udiences seem to be geared towards patients, volunteers and
. Although

information about ACS fundraising events

volunteer opportunities

and access to
patient discussion boards is useful for these particular audiences, healthcare providers and res
may benefit from having access to information more relevant to their needs. For example, ACS could
create a Facebook account or YouTube channel that links healthcare providers to more clinical
information about the prevention and treatment of can
cer and access to professional education
opportunities. Researchers could be accommodated by having access to cancer
research social media
networks to encourage research collaboration and provide them with information about available ACS
funding opportunit

Recommendations for Leukemia & Lymphoma Society

Eliminate clutter from
LLS.org homepage

The LLS website is well organized by target audience an
therefore, in my opinion, is easier to navigate than the other two websites

However, the middle of

homepage is extremely crowded with unorganized links to news stories and LLS
announcements. It distracts the user and is overwhelming.
The design of the website is also
unappealing. Although they make use of bright colors to differentiate bet
ween the different website
sections, these sections appear in small font as part of the left navigation bar instead of being displayed
across the top of the site, which, in my opinion, is a more natural place to look when logging onto a
website. To make t
heir website more attractive and information more accessible, I would suggest that
LLS eliminate the clutter in the middle of the LLS.org homepage and redesign the site so that the
website sections are displayed clearly across the top of the page.

ance accessibility to all web
based communication technologies through LLS.org.
Like the
other two organizations,
in addition to managing a website,

is successful
in utilizing
social media
and other web
based technologies
to reach t
arget audiences. Alt
hough users are able to access RSS
feeds, podcasts and an enewsletter through the LLS.org homepage, users must use the site’s search
tool to link to the online chat feature, LLS blog and social media profiles (Facebook, YouTube,
LinkedIn). LLS also manages

what appears to be a useful internal community support network for
patients (
but I was only aware that it existed because I found the link to it on the
LLS Facebook page.
As recommended to A
I would suggest LLS add links for these resources to

the LLS.org homepage


these resources on one
easily accessible webpage as is done
on NCI’s website, Cancer.gov.


comprehensive evaluation of LLS.org.
The LLS website has a
permanent link for users
to take a 10 minute online survey to provide feedback on different LSS publications. There is a long list
of publications from which users can choose from. However, there is no option currently for users to
leave feedback about t
he LLS website. Since the LLS mission is largely focused on providing support,
resources and education to their target audiences, it would make sense that they’d want as much
feedback as possible from website users to make sure they are satisfying user nee
ds. I would
recommend either adding “website” to the list of publications for users to evaluate, or adding the
American Customer Satisfaction Survey to their website like NCI and ACS have done. Additionally, as
recommended to NCI,
LLS should use the same p
age specific feedback system as ACS. Adding both
of these features to LLS.org would ensure a comprehensive evaluation and increased ability of LLS to
optimize the use of their website.

Create LLS Social Media sites for healthcare providers and researche
As recommended to

LLS should create audience
specific social media sites, specifically ones for providers and researchers.
Like ACS, LLS uses social media mostly to reach out to patients, families, advocates and volunteers.
Social media networks a
re an easy way to reach and share information and knowledge with very
specific audiences. Since a large part of the LLS mission is to advance cancer treatment through
research and education, more effort should be made to engage healthcare providers and re
through all possible web
based mediums, including social media.