Web Strategies for Health Communication (HCOM 512)
Case Study Assignment
Prepared by: Katherine Perch
Date: July 18, 2010
Email: Katherine.Perch@Tufts.edu
Introduction
For this assignment, I chose to focus on the web strategies of three national cancer 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, diagnosis,
treatment, and patient experience and supporting research and advocacy efforts. The three
organizations include the National Cancer Institute (NCI), the American Cancer Society (ACS), and the
Leukemia & Lymphoma Society (LLS).
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 stem cell transplant recipients and their
caregivers (stem cell transplant is sometimes used to treat oncologic disorders). By focusing on cancerrelated websites for this exercise, what I learn will be directly applicable to this project and I will be
better able to help our research team improve our own web strategy.
Case Study 1
Organization name: National Cancer Institute
Website name and URL: http://www.Cancer.gov
Staff involved in Web strategy, design, implementation, usability, and marketing: The staff within
the Office of Communication and Education (OCE) is responsible for developing communication
objectives, audiences, messages, and strategies as well as evaluating the results of these activities.
The OCE is responsible for the design, development (including research and development of new
media), maintenance and evaluation of all NCI websites and related web-based technologies. Divisions
within the OCE that share responsibilities of the above tasks include the Office of the Director
(OCE/OD), the Communications Planning and Coordination Branch (CPCB), the Business Operations
Branch (BOB), and the Communications Technology Branch (CTB). Major components of these
divisions include:
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Office of Public Information and Resource 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: The 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
National Institutes of Health (NIH). NCI is the US Federal Government's principal agency for 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 annual budget
for 2009 was $4.967 billion. However, a large percentage 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: NCI’s mission is to conduct and foster cancer research; review and approve
grant-in-aid applications to support promising research projects on the causes, prevention, diagnosis,
and treatment of cancer; collect, analyze, and disseminate cancer-related information, including the
results of cancer research conducted in the United States and in other countries; and provide training
and instruction in the diagnosis and treatment of cancer.
Target audiences: 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 organization 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 and support cancer research, provide education and training in cancer detection and
treatment and disseminate cancer-related health information to various target audiences. NCI's umbrella
website, Cancer.gov, houses extensive information in English and Spanish on the prevention, diagnosis
and treatment of cancer, cancer statistics, available research and funding opportunities, information on
current and past clinical trials, a clinical trial search tool, cancer-related news, as well as links to other
NCI supported 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 caBIG, an online tool that enables cancer researchers to share research-related
knowledge and data. To support the NCI’s goal of providing education and training to promote in
cancer diagnosis and treatment, NCI provides a web-based collection of teaching modules for health
professionals (PowerPoint and PDF downloads) and access to an additional clinical information database for
physicians (PDQ®). To further uphold their mission to provide cancer-related news and information to
all audiences and connect researchers to funding and training opportunities, site visitors can subscribe
to the NCI Cancer Bulletin biweekly enewsletter.
In terms of social media, users can easily access NCI social media 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 that
hosts videos to educate viewers about the value of cancer research, including clinical trials, and videos
that promote important NCI programs. NCI also has several Twitter profiles relevant to different
audiences including the public, cancer patients, the media, researchers/scientists 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 opportunities 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
Facebook 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 their 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 enewsletter and news feeds. NCI also manages several RSS
feeds to appeal to different 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 blogs.
NIH does have a website dedicated to videocasts and podcasts that may be of interest to NCI
constituents, though it isn’t easily 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 target audience: To support research as well as the
education and training of healthcare providers, NCI hosts national and local conferences and publishes
magazines, such as CCRConnections, and several scientific journals. These are available online as
well as in print. To promote awareness of cancer related topics, especially the importance of clinical
trials, 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
as “talking to patients about clinical trials”. Booklets, pamphlets, fact sheets and posters on clinical 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
cancer-related information and educational materials through the NCI’s Cancer Information Service
(CIS). The CIS information specialists are trained to answer questions about available NCI resources by
telephone, a live chat service, and email.
Technology platform(s) used for Web site: NCI provides various target audiences with information
through a variety of platforms on their Cancer.gov website including a data sharing tool called “caBIG’, a
web-based collection of teaching modules for health professionals (PowerPoint and PDF downloads), access
to a diagnosis and treatment database for physicians (PDQ®), a biweekly enewsletter called the NCI
Cancer Bulletin, and a 'Livechat' feature for NCI and cancer-related inquiries. Educational PPTs and
print materials for different audiences are available for download through Cancer.gov’s “publications”
section. NCI does not appear to offer website visitors the option to subscribe to NCI-specific podcasts,
videocasts or a blog. NIH has an extensive collection of videocasts and podcasts available to the 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 available.
Number of registered Web users and number of unique site visitors in 2009: The cancer.gov
website does not give users the option to register for an account. Unfortunately my many requests
(phone, email, 'Livechat') did not yield a response with 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
most popular website of the three sites being compared based on this ranking, which is calculated using
a combination of average daily visitors to the website and number of pageviews on the 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 what feedback is received directly from site
users through email or feedback form: NCI utilizes a pop-up feedback survey called the “American
Customer Satisfaction Survey” to obtain feedback from site users. The survey asks users to rate
accuracy and quality 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 of 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 (Cancer.gov/contact).
Have evaluations been conducted and with what results: The Office of Communication and
Education is responsible for evaluating NCI’s web strategy. Evaluation activities include ongoing
implementation of user-centered assessments of NCI websites, collection of web metrics and analysis
of user web-based information-seeking behaviors. Information on the exact results of these evaluation
activities was not available.
Initial impetus behind Web presence: Since 1971, when the National Cancer Act mandated “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 launched the Cancer Information Service (1-800-4CANCER) and in 1983 the Physician Data Query (PDQ) database for physicians was available online.
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
CancerNet, a computer-based information service which ultimately became the Cancer.gov website.
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 agencies, NCI published Web design and Usability Guidelines for government websites in
1999. They then created a web design and usability website (usability.gov) in 2000. They updated their
guidelines in 2001. At that time, NCI had 130 websites across their institution, maintained and managed
by 50 webmasters. Following the publication of updated guidelines in 2002, NCI launched a new NCI
umbrella website, Cancer.gov, to replace CancerNet. The new website was designed to be more
visually appealing and its contents 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 NCI
Cancer Bulletin enewsletter became available. In 2004, Cancer.gov won a Freddie award for 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 profiles 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.
Links to press and blog posts (internal or external) about website/web strategy:
NCI Announces New Web Design and Usability Web Site
December 13, 2000
http://www.cancer.gov/newscenter/webusability
NCI Announces New Research-Based Web Design Guidelines for Improving Health Information Web Sites
May 3, 2001
http://www.cancer.gov/newscenter/usabilityguidelines
NCI Launches Redesigned One-Stop Cancer Resource Web Site
January 22, 2002
http://www.cancer.gov/newscenter/Cancergovlaunch
National Cancer Institute Wins FREDDIE Award for Its Web Site
November 8, 2004
http://www.cancer.gov/newscenter/pressreleases/FREDDIEAnnouncement
SWOT Analysis of NCI Web Strategy
Strengths
Weaknesses
 Large number of qualified staff dedicated
to communication initiatives
 Access to usability.gov guidelines to
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
organized/accessible
 Use of comprehensive user feedback
survey (American Customer Satisfaction
Survey)
 Umbrella website visually unappealing (too
“crowded”, small font)
 Not well organized to allow for easy access
to information relevant to a specific target
audience
 No blogs
 No user registration/account feature
Opportunities
Threats
 Web-based technology for patients &
providers available
 Optimize use of social media platforms to
meet the needs of different target
audiences (currently very research
focused)
 Several other competing cancer-related
websites are available on the Web
Case Study 2
Organization name: American Cancer Society
Website Name and URL: http://www.Cancer.org
Staff involved in Web strategy, design, implementation, usability, and marketing: The ACS
representative I spoke with described 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 well as the business objectives of all satellites
need to be represented through the Cancer.org website. The Health Promotions division is responsible
for developing communication content to achieve this goal and “curating” content, or ensuring content
and branding 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 “outbound 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
content. The measurement/metrics team within this division is responsible 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-based,
voluntary nonprofit 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 suffering from cancer, through
research, education, advocacy, and service.” Additionally, providing the public with accurate, up-to-date
information on cancer is a priority for the American Cancer Society.
Target audiences: The target audiences of ACS include 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 seems 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 (www.dana-farber.org/can).
Web strategy to date to achieve this mission: ACS’s umbrella website, Cancer.org is available in
English and Spanish and includes extensive information for patients, caregivers, families, healthcare
providers and the public on the prevention, diagnosis and treatment 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
boards), an overview of research accomplishments and simplified cancer facts and figures. Another
useful tool for patients includes a Clinical Trial Matching Service where patients can take an online
survey and receive feedback about 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 preferences 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 ACS 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-related 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
a 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. ACS
has a blog called “Dr. Len's Cancer Blog”, authored 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. To accommodate the media, ACS has a link
at the bottom of 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 cancer-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 Cancer.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 Acscan.org: 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 enewsletter, and access outside
news stories and videos through several homepage links.
ACS also utilizes social 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 platforms, 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 Blog 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, coping, care giving, and survivorship (can
be ordered online or via phone). The online bookstore also offers a number of books of interest to
physicians, nurses, dietitians, and other health professionals, from comprehensive, evidenced-based
patient guides on cancer treatment to guidebooks for oncology nurses and social workers and statistical
atlases on cancer and tobacco use. ACS publishes medical and clinical journals for health
professionals and researchers. 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 platform
terminology, the ACS representative I spoke with informed me that the ACS technology platform was a
“dot net platform with an oracle content management system and open standards for rich media (HTML
5) to allow for website accessibility through mobile devices.”
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
by the measurement/metrics team under the Interactive and New Media division within the American
Cancer 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 Alexa.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, to get feedback on specific pages, ACS imbeds a survey
question at the bottom of each Cancer.org webpage that asks “was this information helpful?” When a
user clicks on an answer, a few more questions about their use of that page and information are asked.
This seems like it would be very useful 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 results: 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 only 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.
How was the name, tagline, logo, and branding developed? By Whom?: Information on the
development of the website name, etc. was not available but the ACS representative did explain that the
Health Promotions division is responsible for ensuring content and branding of the organization is
accurately represented in communications published by ACS and external parties.
Initial impetus behind Web presence: ACS 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, going
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-related
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. The
new website includes better search engine technology and an updated look-and-feel. The original
information feature on cancer prevention and early detection, diagnosis and treatment, survivorship, and
advocacy 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 Cancer.org, launched in June 2010
Features that have been identified as important or that people are requesting: The new
Cancer.org website launched in June has several new features which were added in response to user
feedback 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 (Yahoo, Gmail, Facebook), 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 unlimited budget: Given an unlimited budget, the representative I spoke
with at ACS would put the following three items on his web strategy “wish list”:
1. “Unified Multi-Channel Approach” to their web strategy (web, social media, mobile) to allow
users of one platform to transfer to content on another platform easily.
2. 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 advice or support.
3. 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/advice/support from volunteer experts in a
convenient way.
Links to press and blog posts (internal or external) about website/web strategy:
A New Cancer.org is Coming
June 21, 2010
http://ww2.cancer.org/docroot/SPC/content/SPC_1_A_New_Cancerorg_is_Coming.asp
SWOT Analysis of ACS Web Strategy
Strengths
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Large number of qualified staff
dedicated to communication initiatives
Advanced search tool (site section &
content type specific (video, blog))
Links to other ACS websites easily
accessible on homepage
Comprehensive website evaluation
Use of several web technologies to
achieve mission (discussion board,
online donations, resource finders,
online chat)
Weaknesses
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
Opportunities


Mobile and rich media technology to
link patients to volunteers and expert
advice from healthcare providers
Use of social media to reach out to
researchers and healthcare providers
Social media sites, blog, podcasts and
enewsletters and online chat feature not
accessible through homepage
All resources for healthcare providers &
researchers difficult to find
Clinical Trial Matching Service difficult to
locate on website
Threats

Several other competing cancer-related
websites are available on the Web
Case Study 3
Organization name: The Leukemia & Lymphoma Society
Website Name and URL: http://www.LLS.org
Staff involved in Web strategy, design, implementation, usability, and marketing: A Chief
Information Officer (CIO) is responsible for overseeing the overall technology strategy, delivery, and
services for LLS. The major responsibilities of the CIO include technical infrastructure and Web &
Applications development. The CIO also oversees the evaluation and implementation of emerging
technology opportunities. The Chief Marketing & Revenue Officer (CMRO) provides strategic direction
and leadership to the organization’s marketing and resource development operations. The CMRO
“provides leadership in the development of strategic plans in order to drive integration, cohesion and
synergies across all marketing and fundraising disciplines [including web marketing], and across the
organization”. Also included in the major responsibilities of the CMRO is the coordination of e-giving.
The Senior Vice President of Patient Services also contributes to the LLS web strategy. This person
“provides strategic direction and oversees the development, guidelines, evaluation and operations of
LLS patient and healthcare professional services programs, some of which are delivered on the web,
and 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 financial assistance to patients, sponsors scientific
conferences around the country, produces educational materials and videos, and runs dozens of Family
Support Groups nationwide. The LLS budget in 2009 for the entire organization was $263,138,553, and
was divided between program expenses (74.5%), administrative expenses (7.8%), and fundraising
(17.5%)). The exact budget for their web strategy was not available.
Organization’s mission: The LLS mission is to cure leukemia, lymphoma, Hodgkin's disease and
myeloma, and improve the quality of life of patients and their families by funding and supporting the
conduct and participation in research and connecting patients, families and caregivers to expert
information and support.
Target audience: The target audiences of LLS include patients, caregivers and their families,
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 Navigator” website include
Alex's Lemonade Stand Foundation (PA), CancerCare (NY), Skin Cancer Foundation (NY), Children’s
Cancer Center (FL).
Web strategy to date to achieve this mission: The organization’s website, LLS.org, houses blood
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 navigation. 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 community 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 including free webcasts and free
downloadable educational print materials; access to monthly e-newsletters, RSS feeds, a blog and
podcasts. The blog, launched in January 2008 (http://community.lls.org/blogs/lls), is updated regularly
with news from LLS and guest blog posts including patient stories, research findings and advocacy
updates. To facilitate awareness of and participation in clinical trials, the LLS main website links to a
clinical trial search engine called 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
e-store with various LLS merchandise for purchase. 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 Network, access tips and
resources 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
mission, LLS maintains other websites devoted to specific 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
opportunities, and provides easy access to medical literature through PubMed. To increase awareness
of LLS, the 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 RSS
feeds.
In terms of social media, LLS has a Facebook page and two Twitter profiles, one for general
audiences and one for Team In Training event participants to access fundraising, training, nutrition,
health and fitness information. The LLS YouTube channel, created in 2007, hosts videos from LLS
fundraising events as well as LLS and cancer-related PSAs. LLS also has a LinkedIn 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.
In addition to Web, other ways of reaching target audience: To fulfill their cancer education-related
goals, LLS sponsors national webcast and teleconference blood cancer education programs and
community-based education programs for patients, caregivers and healthcare professionals. They also
provide access to an Information Resource Center (IRC), a call-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
marathons 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 chat 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 educational 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 in 2009: I was unable to obtain
this information from LLS despite multiple 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 inquiries 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 significantly 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 major component of the LLS
Information Resource Center (LRC), which provides individualized information to patients and their
caregivers about blood cancers, resources and treatments. It is clear from reviewing website content
and reading press releases and annual reports that providing information to constituents through this
service has greatly contributed to the increase in contacts.
Timeline of how Web presence has evolved since initial launch (redesign and/or new features):
The Leukemia & Lymphoma Society launched their website in 1997. 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 programs, 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 organization’s 60th 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 caregiver. In
March 2009, a new web tool called Trial Check search engine replaced an earlier LLS 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 “add 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 photos and update family/friends on their status.
New LLS.org Website
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 Health & Medical Media Awards
competition, known as the FREDDIE Awards, sponsored by Time Inc. Health.
Links to any press or blog posts (internal or external) site:
Launch of New LLS Website
January 2009
http://www.leukemia-lymphoma.org/eMarketing/eNewsArchives/eNewsline/2009/January.htm#story1)
SWOT Analysis of LLS Web Strategy
Strengths
 Website information and features well
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
Opportunities
 Comprehensive website user feedback
surveys have been developed and are
available
Weaknesses
 Homepage very crowded
 Links to other 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
Threats
 Several other competing cancer-related
websites are available on the Web
Comparison 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 mentioned previously, connecting patients and their families,
healthcare providers, researchers and the public to comprehensive and credible cancer-related
information is common to the missions of NCI, ACS and LLS and each organization uses a variety of
web-based 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 facilitating 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-to-date
news, information and opportunities 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 organization 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 is 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 education 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
educational 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
web-based education programs sponsored by NCI, ACS and LLS offer various 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 opportunities for support from cancer experts, other patients and
volunteers through discussion boards and online communities. NCI does not manage patient-centered
online community or discussion boards but this may reflect their less patient-centered mission when
compared 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 scientists. NCI also offers physicians access to a clinical
data sharing tool to advance cancer diagnosis and treatment.
Fundraising/Advocacy. To increase financial support for the advancement of cancer prevention,
treatment and research, ACS and LLS provide their 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
government 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 advocacy 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.
Website 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-up
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
open-ended contact form to submit website-related feedback or suggestions.
Website Design. Despite the success of these organizations in providing 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 the 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 them, 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 Cancer.org
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 channel, each organization uses
social media to reach target audiences and promote their 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 resources (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,
the 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
various target audiences can quickly and easily access information relevant to their particular interests.
Recommendations
Recommendations for NCI
Reorganize 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 to
navigate. It’s hard to tell what information is for patients vs. researchers vs. health professionals vs. the
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 cancer-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.gov
information by target audience, delivering 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 follow his model for all 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
Cancer.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 adjustments to their website to increase appeal and
minimize the chance of overwhelming website 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-researcher at
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 to 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.
Create 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 website’s search function. This is a medium used by the
other two organizations to deliver NCI and cancer-related 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
blogs for healthcare providers, researchers and patients to further reach their information dissemination,
education and training and research-related goals.
Offer access to evidence-based web-technologies. As part of my position as a Research Associate
at Tufts Medical Center, I have recently been doing a lot of literature searching for evidence-based
technologies aimed at improving health outcomes and quality of life for cancer patients and their
caregivers. There is some evidence behind certain web-technologies (websites, web-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
directly 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 register for a Cancer.gov account. This feature is available on the ACS and LLS
websites. I suggest NCI adopt this feature as well to make information gathering and website
navigation for users more convenient by enabling them to sign up for email alerts and enewsletters in
one place and save preferences and previously accessed resources across website visits.
Evaluation of specific Cancer.gov webpages. To get feedback on specific pages, the American
Cancer Society posts a survey question at the bottom of each page of their website that asks “was this
information helpful?” When 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 website 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.gov webpages.
Recommendations for American Cancer Society
Enhance accessibility to all web-based communication technologies through Cancer.org. The
American Cancer Society is successful in optimizing social media and other web technology, including
podcasts, blogs, enewsletters and an online chat feature, to reach target audiences. However, to
maximize the impact of communication efforts, it is important to make sure communication channels are
easily accessible. Therefore, I would suggest ACS add links to their social media sites, blog, podcasts,
enewsletters and online chat feature to the Cancer.org homepage, and/or organize these resources on
one webpage with descriptions of associated content as is done by NCI.
Reorganize information on website by 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 what
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 only 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 trials is extremely important to cancer patients and
their physicians. 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 them to have an information specialist walk me through their website to access the page where it
was hiding. It 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 provide 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 creating 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 audiences seem to be geared towards patients, volunteers and
advocates. Although information about ACS fundraising events, volunteer opportunities and access to
patient discussion boards is useful for these particular audiences, healthcare providers and researchers
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 cancer 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 opportunities.
Recommendations for Leukemia & Lymphoma Society
Eliminate clutter from LLS.org homepage. The LLS website is well organized by target audience and
therefore, in my opinion, is easier to navigate than the other two websites. However, the middle of the
homepage is extremely crowded with unorganized links to news stories and LLS-related
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 between 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 their 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.
Enhance accessibility to all web-based communication technologies through LLS.org. Like the
other two organizations, in addition to managing a website, LLS is successful in utilizing social media
and other web-based technologies to reach target audiences. Although 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 (http://community.lls.org) but I was only aware that it existed because I found the link to it on the
LLS Facebook page. As recommended to ACS, I would suggest LLS add links for these resources to
the LLS.org homepage and/or organize these resources on one easily accessible webpage as is done
on NCI’s website, Cancer.gov.
Implement 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 the 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 needs. 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 page 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 researchers. As recommended to ACS,
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 are 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 researchers
through all possible web-based mediums, including social media.