Lisa West LIS 758 The Leukemia & Lymphoma Society Case Study December 2, 2010

Introduction
This paper will investigate the Leukemia & Lymphoma Society (LLS) website in order to obtain a better understanding of the context in which users access the site. An overview of the site will illustrate most of the services that the LLS site offers. The bulk of the research will be on the LLS blood cancer discussion boards (DB). The DBs will be investigated to see how many discussions there are per board and thread. The length of membership and number of posts will also be recorded. The number of replies to one post versus how many people just view the post will be documented. The content of the discussions will be researched to see if users are looking for answers, support, advice, camaraderie, etc. No members of the LLS or DB users will be contacted. For the purposes of the study, no specifics will be used to refer to individual posts, even though the posts are open to the public. To maintain confidentiality of users, names and descriptors of quoted users will be withheld. Additional site and user statistics have been obtained from the LLS (see appendix A). The findings of this paper will be compared to current ideas in community informatics. It will be seen if the role of the LLS and its DBs confirms ideas in published research and articles on community informatics.

LLS Background
The LLS is a voluntary health organization funding blood cancer research, education, and patient services. Their mission is to cure leukemia, lymphoma, Hodgkins disease and myeloma, and improve the quality of life of patients and their families.1 They facilitate an active virtual community that benefits its users by offering information and support in a variety of vehicles.
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In 1944, the Villiers founded what would become the LLS in memory of their son, Robert, who died of leukemia at 16. In 1955, leukemia was still considered 100% fatal. Since then, the LLS has been instrumental in facilitating life saving research on blood cancers. Their fundraising campaigns have raised over $600 million for research since 1954. They offer educational and patient services that includes matching newly diagnosed patients with a peer volunteer, contact with medical professionals, teleconferences, Webcasts, live online chats, blogs, support groups, information, financial aid, workshops, and the ability to post a private blog that friends and family can access to keep up with a users health.2 The LLS also has physical sites located throughout the United States. They serve to support the LLS website services as well as to provide unique services of their own. The Illinois Chapter has programs to support local communities including an information resource center, a financial aid program, support groups, resources, The Trish Greene Back to School Program for the Child with Cancer, patient services, and patient advocacy.3 Members come together for fund raising activities, notably, Team In Training. These members raise awareness and funding by participating in races to collect donations for LLS.4 There is also an LLS sponsored bone marrow drive to assist in saving the lives of strangers with blood cancer through transplant.5 These services show evidence of capacity building in the community.

LLS Website Services

At the top of the patient services menu on the LLS website is a link to information about the LLS call center. An 800 number connects users to information specialist that have masters degrees in social work and health education. The line is staffed Monday through Friday from 9 AM to 6 PM EST, a message can be left at all
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other times. The user is connected to information about treatment options, clinical trials, materials ordering, and interpretation services. The user can also click on links to enter a clinical trial, view and order material, and utilize an automated web page translator. This information is available on Spanish, French, and Portuguese versions of the web page.6 This enables the programs to be accessible to a diverse group of community members, increasing digital inclusion. By October 31, 2010, 77,159 inquiries had been answered by the Information Resource Center for that year.7 Information on a broad range of financial issues are covered on the website. This is supplemented by links to more information. Users are encouraged to call with further questions.8 Information and an online application for care and prescription financial aid, both through the LLS as well as other organizations is included.9 In the first nine months of 2010, 40,392 patients received financial aid and 5,536 received co-pay assistance.10 The pages cover patient insurance and employment rights as well as tips during treatment and after.11 Users are encouraged to stay informed by a variety of mediums.12 Users can subscribe to RSS feeds, podcasts, and an e-newsletter catering to the users interests.13 Live and archived teleconferences and webcasts are available to patients and caregivers, some qualifying for continuing education credits.14 Links to forty-six resources on information, treatment, well-being, insurance, finance, counseling, Canadian and International services, and professional organizations and healthcare providers are provided and updated frequently.15 The page also leads to a customizable events calendar.16 Two lists of selected readings are also available.17 From the beginning of 2010 to August 31, 2010, 438,105 users participated in telephone and web-based programs. One million two hundred and seven thousand printed booklets, brochures,
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fact sheets and DVDs were distributed. The LLS provides significant support and education for its users. The Patti Kaufman First Connection Program is one example of how the LLS builds leadership across community groups. The program connects the patient and family members to someone who has been through it. The participants are matched by diagnosis, age, and gender. The peer volunteers are trained in basic counseling skills. They provide the newly diagnosed with the tools to navigate the resources available to them from the LLS and their local community. They also provide emotional care and support.18 A program user says, We had so much in common that I felt as if I had known her for a lifetime. This person who is so much like me had gone through the same experience and made it through. She became my inspiration. Whenever I had a hard day and felt like I couldnt keep going through chemo, she was there. All of the questions that had run through my mind had run through hers as well. She had a lot of the answers, and when it came to the questions for which there are no answers she still knew what to say. I didnt realize it at the time, but she was reliving some difficult memories through me. But she is selfless & caring and continued to support me even though it wasnt easy. She helped me through the hardest battle of my life. LLS is a wonderful organization and truly does make a difference.19 The LLS CarePages are a place for community members to create a website to keep family, friends, and colleagues updated. Through the site photos and messages can be shared. This is a free, private website and is also available in Spanish.20 The LLS encourages the community to review and evaluate their services. There is a survey available for feedback regarding LLS publications. Weekly two hour online chats are moderated by an oncology social worker. The group determines his/her role.
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The discussion board moderators are available to assist in any questions or comments regarding the discussion boards, including how they can be improved.

Discussion Boards (DB)

From the beginning of 2010 to August 31, 2010, 113,493 users visited the blood cancer DBs.21 The DB topics include Waiting for a diagnosis, Newly diagnosed, Living

with[specific blood cancer type], Cancer related issues, Blood and marrow stem cell transplantation, Caregiver lounge, My child has cancer, Young adults, Survivorship: life after cancer, Grief and loss of a loved one, and Lets just talk.22
In order to assist community members with the skills and knowledge required to use the DBs, guidelines have been posted. These include consulting your doctor for medical advice, not your DB peers. The DBs are meant to be for peer-to-peer support. The boards are open to the public, so posting full names and contact information about yourself and your family is discouraged. A long list of items not to post, such as solicitation, private information about yourself or others, and obscenities are listed. If there are any questions, a moderator or a peer volunteer can personally assist a user.23 The boards are monitored, not moderated, by professional with Masters degrees. Moderators can edit and delete inappropriate posts, but do not join in the discussions, as the boards are intended for peer-to-peer communication only.24 There is a link for members to report a post for review if a member has found it to be offensive or in the wrong section.25 In reviewing numerous boards and postings, only one discussion thread was found that seemed argumentative and negative. The replies were in response to the question, What are some controllable factors that you believe

contribute to your survival? Many users believed that this was faith and God. One user
felt that this was offensive and incorrect and a lively debate ensued. It appears that a
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moderator did intercede eventually, but the users seemed to be able to police threads on their own by either asking to end the debate or by ignoring the one user (see appendix B). In each DB topic, the users and their activities were analyzed. By looking at samples of member profiles, it was determined how long they had been a community member and how often they started or replied to a post. Some discussion threads on each topic were reviewed to determine the nature of the post, the number of replies, and the nature of the reply. This was done to determine who uses the discussion board and more specifically, the topic, and why. In the DB, Waiting for diagnosis, the profiles of twenty-seven posting members were analyzed. The average length of the membership of the twenty-two oldest members was four months, with five new members in the first ten days of the newest month. The fact that the bulk of posting users for a Waiting for diagnosis topic are newer members is to be expected, due to the topic. These members posted an average of 1.4 threads. Sixty-six percent had not replied to any other post, and most had only replied to a few posts. As newer LLS and DB members, it was not unexpected that they would post and reply infrequently. Of thirty posts, twelve were questions and sixteen were users telling their story of waiting for a diagnosis. Eight users telling their story also asked a question. One hundred and seventeen replies were posted to the thirty thread topics. Some of these included replies from the original thread author. A post was only considered a new thread if the author started a new subject heading. The postings were mostly users telling relating their symptoms, experience with medical professionals and testing, and waiting for results. Most authors expressed how difficult it was to wait for results. The
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questions they asked were for feedback from users who had similar symptoms. Most authors were waiting for their own cancer diagnosis. Two were from mothers, two were from children, and one was from a partner. Most replies answered the authors questions, next offered their own story, and the next largest group offered advice. On this topic, both authors and repliers of threads used this topic to tell the story of waiting for cancer diagnosis. The tone of all discussions was positive, though authors did express worry. Only six replies included venting. In the DB, Newly diagnosed, twenty-four user profiles were analyzed. The average length of membership was forty-seven days. Two members were new members that day and the oldest community member had been one for seven and a half months. The average number of posts was ten, some users having only started one post, while one wrote fifty posts, an average of one a day, and another ninety-five, about one every two days. Nine posts were about a friend or family member, the remainder was posted by the newly diagnosed. It is no surprise that these members posted more than those waiting for a diagnosis. Eighty-five percent of the posts were questions about what to expect, the rest telling their story, and one request for support. The majority of the replies to these posts were advice, twenty-four percent, closely followed by support, nineteen percent, and then answers to posted questions and his/her own story at sixteen percent each. Thirteen percent offered thanks and eleven percent had follow up questions for the poster. Each thread was viewed an average of 2,843 times even though the average number of replies was only ten. In the Living with Hodgkins lymphoma DB, twenty-four user profiles were also analyzed. The average length of membership was three and a half months. The range
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of membership was one month to five months. Three of the posts were regarding family members, the rest were users posting questions about his/her own health. The most active thread was regarding a user question of how to keep her husband in treatment, even though he wanted to quit. This thread had 4,841 views and seventeen replies. The next most popular thread had 2,000 fewer views and six less replies. Most users averaged seventeen posts, the least with one post and the most with ninety-eight. The posts were viewed an average of 1203 times with an average of four replies per post. Eighty-eight percent of posts were to ask a question. Thirty-eight percent of the replies to the posts were to relate the users own story. Following that, twenty-two percent offered advice and eighteen percent offered answers to questions posed. Nine user profiles were examined in the Survivorship: life after cancer DB. Fewer profiles were examined as some posts had a large number of replies to be viewed. The average length of community membership was five and a half months. The range of membership was one to nine months. The users in this group posted an average of sixty-eight times. All of the posts were about the users own experiences. The average number of views per thread was 15,049. These ranged from thirty-six views for one thread to 91,581 for the most popular. Three of the posts were very active. The average number of replies were fifty-four. These ranged from one reply to 340 for the most popular post. One post, regarding the celebrity, Suzanne Somerss book, Knockout had 275 posts, 8117 views, and forty-six replies. This was the only post that the majority of replies, thirty-four percent, were user opinions. The opinions were either positive in regard for the need for investigating alternative cancer therapy methods, or negative
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towards a celebrity endorsing unscientific views. The next largest replies were nineteen percent advice and nineteen percent users giving their own story. Another large thread was under the question, Survivors: what are some

controllable factors that you believe contribute to your survival? The thread had
28,019 views with sixty-five replies. Thirty-one percent of replies were users sharing his/her own story, twenty-eight percent were advice, and thirteen percent were attempts to answer the question. This thread was the thread mentioned earlier (see appendix B), as the only thread seen to have argumentative and negative replies. The largest post was, Any AML (acute myeloid leukemia) survivors please post

here. This thread had 91,581 views and 340 replies. One-third of the most recent
replies were sampled. Forty-eight percent of the posts were users supplying his/her own story followed by twenty-four percent offering support. In reviewing the four DBs investigated, it appears that the average user is only a member of the LLS DBs for about three months. As K states, It is so good to read posts from all the survivors!!!! I think many go away from the boards after feeling better, I'm glad some stick around and make us feel good and full of hope!!26 However, as they progress from Waiting for a diagnosis, to Newly diagnosed, to Living

with, and finally Survivor status, the members number of posts increases from an
average of one and a half, to ten, to seventeen, and finally to sixty-eight. In the first three categories, the posts were mostly questions. When the member achieved survivor status, the posts changed to a higher percentage of sharing their personal stories. Even with the most active threads, many more community members viewed the thread than actually posted a reply. This shows that even if a member is not active in a discussion, they still are viewing it in order to get information and maintain contact with
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the community. This shows that the DBs help significantly more members that just those that actively participate in discussions.

Ties to other literature

The evaluation of the LLS site, especially the DBs, confirms that communities can exist online and strong ties can be formed. These ties are based on interest, rather than geography. Internet and communication technology (ICT) can be used to empower its users. It has created a new frame for the concepts of connection and community. In Internet and community, Haythornthwaite states the Internet is changing where and how communities are created. There are physical sites that connect cancer patients and family, such a Gildas Club. However, the LLS DB community is an online community. There is little indication that DB members ever meet physically. Users connect based upon common issues, not on geography. This also ties in with Haythornthwaites assertion that some communities not only form strong ties online, but that these communities would not exist or be maintained without the use of ICTs. These online relationships form strong, supportive ties that can net local civic benefit, by offering each other information, support, and advice. This combats the fear that Americans are losing friendship ties. They are in fact creating new ones online.27 Pigg and Crank also state the ICTs create ties of various strengths that provide information and social support to a community site that emphasizes the unique history of the community. This is exactly what the LLS site does. The transition that users can make between DBs, from Waiting for diagnosis, Newly diagnosed, to Living with

(specific cancer), also highlights Pigg and Cranks assertion that ICTs enable users to
switch rapidly and frequently between groups of ties.28 A tangible benefit of an ICT support group such as the LLS site is that it can
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satisfy needs not met locally.29 Several DB users post that the DB enabled them to discuss matters that they could not discuss with their strong ties, family, friends, or local community. Either their local support system did not have the knowledge, or the user did not feel comfortable discussing their illness with them. Some felt that they had to be strong for their friends and family, and therefore could not be truthful about their feelings. They were only able to freely discuss their worries with the weaker, newer ties of the online DB community. This reinforces the research that users have a preference for informal, personalized connections in obtaining information.30 A study of prostate cancer survivors also shows that ICTs play a large role in the obtaining of information and support for the newly diagnosed. Some men felt that the lack of face-to-face contact makes personal disclosure less threatening and stigmatizing. According to Mr. C. of case three, I even read mens conversations about post treatment sex (and in some cases the lack thereof), a topic I previously had been unable to address with my wife.31 Sites like the LLS are changing the frame for community support groups. The social network build on the frame of the DBs assists in creating a personal store of social capital actively built and maintained by individuals to suit their own individual sense of identity, desires, needs and interests. The individual and an NPO construct these community networks, not government, to meet their needs. This is a concrete example of Arnolds idea that community networks are a resource for building private assets.32

Conclusion
In investigating the LLS community, it has been found that most community

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members utilize the site to get information and to share their stories. They receive information through the website, call center, print materials, and by asking peers questions. This information is made accessible by being available in a variety of

mediums and languages, reinforcing digital inclusion. Assisting community members to connect to the information they need to understand cancer helps empower them. As F stated in the DBs, I am lost in this new world and I need to learn how to navigate in it.
33

The LLS site helps her to do this. J

agrees by saying, I know I've said this before, but communicating with you gives me strength and comfort. I have a strong support group at home and with my friends, but you all know how it feels. Thank you for being there and I will keep you all in my prayers.34 The LLS services aid in digital inclusion. As P states, The internet was not a force in my life when I was dx'ed in '98 with stage 4 follicular nhl (fnhl), or perhaps it was I just didn't know it for I was living in a cabin in the woods with my husband and 11 yo daughter, commuting by boat to town for we weren't on the road system and I wouldn't have had time or energy if we had had internet access It was all I could do some days to sweep out the snow that had drifted under the door during the day.
35

Some community members cannot access information and support due to distance, cost, and health issues. Making the LLS site easy to navigate with moderator and peer assistance helps those community members to utilize its services, even it they are not initially familiar with ICTs. It is also helpful that there is print literature and phone support, increasing community inclusion. In seeing that most DB discussion amongst community members involves the asking and answering of questions and sharing of stories, one can see that this is a tool
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for community engagement. H agrees by saying, One of the best things you can do when going thru hard times is to connect with others who are in the same boat. Feel free to email me on the discussion board anytime. The best thing in our fight against all this crap is to connect exchange information and keep each other positive and strong.36 Community engagement can also be evidenced in the online discussions, the peer volunteers, the personal website, fundraising, and bone marrow registration. The LLS online based and community and its physical partner show a strong community and community ties. It satisfies a need that would not otherwise be met. As P states, First I must say I can not thank all of you enough for the information and inspiration. The info good and bad is invaluable to meThe support this site offers is a godsend!37 The LLS is a non-profit organization founded by community members to assist in improving the quality of life of patients and their families. It has achieved this. The LLS is sustainable through the support of its community. Community members assist in volunteer efforts for funding as well as participating in surveys to improve the LLS. Over the course of this investigation, new improvements were seen to constantly evolve on the LLS site. The statistics on member involvement show that the LLS has a significant community base and involvement. Community member comments show how much the LLS and the LLS peer community are appreciated. Hopefully, its mission to cure leukemia, lymphoma, Hodgkins disease and myeloma will succeed as well.

Appendix A

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PATIENT SERVICES An estimated 957,902 people across the United States (US) currently battle leukemia, lymphoma and myeloma. The Leukemia & Lymphoma Society (LLS) offers the most comprehensive array of services to blood cancer patients and their families. Last year alone, LLS made 4.7 million contacts with patients, caregivers and healthcare professionals. INFORMATION AND EDUCATION National Programs: Information Resource Center The Information Resource Center (IRC) provides information and resources useful to patients, their families and health care professionals, and is staffed by masters level oncology social workers, nurses and health educators. Fact sheets for frequently asked questions and a referral database to other helping organizations are available. Patients, families and professionals may call the Information Resource Center toll-free number at (800) 955-4572 Monday through Friday, 9 a.m. to 6 p.m., ET or email to infocenter@lls.org. 77,159 inquiries in 2010 Translation services available in more than 165 languages Online Engagement The LLS website serves a wide variety of education and information needs. Users can personalize their LLS Web pages to keep current with disease specific updates and local chapter education, support and event activities. The site features a comprehensive overview of LLS programs and services, Family Support Group locations, information about our peer-to-peer program First Connection, and other programs. Patients, caregivers and healthcare professionals can interact with LLS in convenient and personal ways through social networking, podcasts and eNewsletters. 3.6 million unique visits to patient services/disease information pages in 2010 176,847 eNewsletter Subscribers 113,493 Blood Cancer Discussion Boards unique visits 103,994 Teleconference Podcasts downloads

Teleconferences & Webcasts LLS sponsors teleconferences and Web casts for patients, caregivers, survivors and health care professionals on leukemia, lymphoma, myeloma and myelodysplastic syndromes. A calendar of these free events and archives of past events are available in
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the National Education Programs section of www.LLS.org. 438,105 telephone and web-based program participants in 2010

INFORMATION AND EDUCATION (contd.) Educational Materials An extensive collection of educational materials is offered free-of-charge to patients and health care professionals. Each year, LLS distributes booklets, brochures, fact sheets and DVDs through the Information Resource Center and local LLS chapters. 1,207,000 printed booklets, brochures, fact sheets and DVDs distributed in 2010 Many materials are also available to view and download at www.LLS.org/FreeMaterials. Downloadable materials are available in English, Spanish and French. Chapter-based Programs: Each LLS chapter is staffed with a patient services manager who oversees the chapters services to patients and their families. Patient services managers are healthcare professionals, often with a background in oncology nursing or social work. Community based education, including the following four programs, are offered through all the chapters 42,848 patient and caregiver participants in 2010 11,953 healthcare professional participants in 2010 New Directions for in Blood Cancer Therapies This program provides patients, families and healthcare professionals with a clear description of what clinical trials are, how cancer drugs are developed, and what the emerging treatment options are for leukemia, lymphoma, and myeloma. Living with Myeloma: An Overview of Diagnosis and Treatment This program provides patients, family members and caregivers with the latest information on myeloma and myeloma therapy, including a question and answer session with a medical expert in their community.
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Getting the Best Cancer Care at Age 55 and Older This education program presents an overview of the many factors, not age alone, that healthcare professionals should assess to determine an appropriate cancer treatment plan for an older adult. Welcome Back: Facilitating the School Experience for Childhood Cancer Survivor This education program discusses possible emotional and cognitive short- and long-term effects that children may experience after treatment, and offers numerous resources that can assist childhood cancer survivors to flourish in the school post treatment.

Support Services: Family Support Groups LLS has developed nearly 531 Family Support Groups at chapters throughout the US and Canada. LLS also has more than 930 volunteer support group facilitators with backgrounds in oncology nursing or social work. Groups are guided by two volunteer oncology health professionals, and provide information and support, and encourage greater communication among patients, families, friends and health care professionals.

10,420 participants in Family Support Groups in 2010

First Connection First Connection is a program that links newly diagnosed patients to a peer volunteer who has experienced a similar diagnosis. A trained patient-volunteer currently in remission contacts the new patient to share information and support. This program is available through LLS chapters.

5,376 First Connections in 2010

Patient Financial Aid Program For more than 45 years, LLS has helped patients demonstrating significant need to obtain financial assistance to cover a portion of their treatment costs. The LLS Patient Financial Aid program offers $150 per year to those with a confirmed blood cancer diagnosis in active treatment or ongoing follow-up. Patient Financial Aid funds are subject to availability. 40,392 Patient Financial Aid recipients in 2010
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Co-Pay Assistance Program This assistance program helps patients with many kinds of blood cancers meet their health insurance or Medicare Plan Part B or D premiums or co-payment obligations related to treating their cancer. Patients with prescription drug coverage, Medicare beneficiaries under Medicare Part B and/or Medicare Part D, Medicare Supplementary Health Insurance or Medicare Advantage should check with LLS to see if they meet eligibility requirements to receive financial support. Co-pay Assistance is subject to fund availability by specific blood cancer diagnosis. For more information call, (877) LLS-COPAY [(877) 557-2672] or visit www.LLS.org/copay. 5536 patients received LLS Co-pay Assistance in 2010

The Trish Greene Back to School Program for Children with Cancer This program is designed to increase communication among health care professionals, parents, patients and school personnel to assure youngsters a smooth transition from active treatment back to school. Printed literature, videos and other materials to aid the process are available through all local chapters, including: Welcome Back: Facilitating the School Experience for Childhood Cancer Survivors Chapter education program. This education program for school personnel and parents discusses possible emotional and cognitive late effects of cancer treatment in children and offers numerous resources that can assist childhood cancer survivors to flourish in the school environment post-treatment. 2,609 school personnel, healthcare professionals and parents participated in the 67 Welcome Back programs across the USA and Canada Learning and Living with Cancer: Advocating for Your Childs Educational Needs This booklet offers parents information on the learning challenges children may face during and after cancer treatment, laws that protect the educational needs of children with cancer and specific ways that schools can help meet a childs educational needs.

About The Leukemia & Lymphoma Society The Leukemia & Lymphoma Society (LLS) is the worlds largest voluntary health
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agency dedicated to blood cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkins disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services.

Source: The Leukemia and Lymphoma Society

Appendix B
T:
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As a man who's studied and thought about this a lot, I'll share my thoughts. If God answered your family's prayers, why didn't God answer the prayers of the famiily's who died from this crap? As for why you and not someone else, well sh*t happens. You got lucky or whatever. You were not chosen for the disease. And, finally, why not you? That was the immediate answer that came to me the one time I dared to ask the question. As for level of faith if you'll look through the Scriptures you'll find that healing miracles tended to happen to unbelievers or those with weak fiath. I've never seen anything resembling a true healing miracle happen as a reward for someone's faith. As with the previous reply, I've saved the exact words I wrote earlier. I make the same offer I did to him, if you request it, I will re-post those very words. Again, I'm relying on the typical inactivity of Saturdays and hoping not many people have seen the post I originally had here. I do want to say I apologize that my original reply to you (which I leave as originally written) was a bit overreactive. I'm just so very tired of people who claim a special reprieve from God while leaving those who lost a loved one or who are definitely dying with "God had some purpose in that death." I snapped. R replies: T, I've read you before. You are judegmental and I don't need that. Started up with this community today. Don't need it if there are others like you. Just answering the question that was asked, thats all. Sorry I offended you. So much for "conversing" on this site. T replies: Thank you for your apology but you didn't offend me. It is very likely that your words about prayer hurt and confused a number of people who don't have a strong faith or any relaptionship with God. The reason they don't have this faith relationship is often because they've mostly heard your interpretation of Christianity and it's so inconsistent and arbitrary that they can't believe. While that message, impersonating fatih, is prevalent around our nation, that does not make it correct. It tends to be the product of very superficial readings of Scripture and immature understandings of who God is. Over my career, I was able to help some of those people, who've been pushed away from God, find their way back to a relationship with God. But in most cases the damage caused by people making the claims similar to yours has cut way too deeply and left permanent scars. Do this for me. When you've sat with a couple of God's children who can't understand why a, supposedy, loving God allowed their child to be blown to smithereens by Tim McVeigh...or an old man who can't understand why, after years of faitful service to God, a tornado ripped his house and everything he owned to shreds...when you've talked with a number of people who can't understand how a just God allowed their loved one to die of cancer, a car wreck, or drown in a river while others lived...when you've done that and you have heard just how empty that whole "God's will thing" rings in your own ears, then let's talk practical theology. Until then, try to have a little humilty. And consider this... When I was in my second induction, I had a sudden attack of e. coli. I literally went from being fine to being unconscious within 15-20 minutes. My fever spiked, My wife
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tells me I had nurses and doctors running out of my room for hours. It hit me so suddenly that I didn't have time to tell God "I wasn't ready" and I had things to put in order. Indeed, I had things put in order. I awoke early the next morning feeling great. I never had another issue with e. coli. But be very sure I was damned near death that night. So, isn't it interesting I had the same respnse as you without a word of prayer? Did God just love me more than you that I didn't even have to give God instructions I was to be saved? Did God have lessons for my life to teach others? If so, how do you know it isn't this very thing I'm doing here, to tell people God really isn't sitting there with a button deciding who's going to live tonight and who's going to cash in? If that might be the case, and only God would know if it is, how dare you challenge God's will? See where that kind of belief leads? Would God really put us in such a totally screwed up "damned if you do, damned if you don't" situation? Is God insane? If so, can we seriously claim God is loving and has our best interest at hearts? . This is not the God Jesus taught us to know. It is not the God I know God to be. That you "told" God you couldn't die that night does not imply that God actually acted to save you. It only implies that you had that thought and you didn't die that night. That's not faith, that's wishful thinking. I once told my wife the way to really terrify America was not to destroy New York, Los Angeles or another big city. I said it would be to hit someplace like Kansas City in the middle of the Heartland. That the first major terrorist attack in the US happened a few miles south of KC in Oklahoma City has absolutely nothing to do with what I told my wife. They're just coincidences. Coincidences happen. By the way, "conversaion" implies dialogue, give and take. It is not conversation when everyone gets up and states they're own position without response. So if that's what you want, here's something to converse about. C replies: This thread has spiraled the wrong way. We are a small virtual family and it is bothersome to read negative posts. I am not saying we cant disagree about an issue however we can disagree and still not hurt each others feelings. This board is very important to me and it has provided great comfort and information for what my family has gone through when dealing with blood cancer. We as a family should be encouraging each other and not pushing family members away. If you have been hurt by this thread, please do not leave the boards. We need everyones voice. This must be a safe place to share. I know we have all been through and are going through a lot of pain and sometimes we let our emotions get the best of us. I think this post is an anomaly. So lets take a big deep breath and relax and remember a few simple rules: 1. Stay on topic, start a new post if the topic changes. 2. If you disagree do so politely. 3. Remember we are a family. PS Lets save the Calvin vs. Armenian discussion for another board T posts on another thread: Trying to Keep a Sense of Humor I received this note over the weekend:
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Hello, You have received this email because the content you posted below has been rejected by our moderators. Re: sharks in the waters?? posted Nov 19, 2010 2:50 PM What are you selling? ~~~~~~~~~~~~~~~ Seriously? The moderator apparently saw the same issues I did, as the thread was removed. So, why make a comment about this thread? It's certainly not the worst I've ever posted. Hell, it wasn't even the worst post I left on that thread, in my opinion. This post responded in kind to a provocative message of "Who do you trust?" It seems an appropriate response to me. Are there any rules of consistency the moderators are given? Or do they just wander willy nilly through the boards judging by what personally offends them? I'm sorry. This whole thing was unnecessary (since they removed the thread, not just my post) and just flat a stupid thing to get overworked about. But it sure as hell came across as an insult.

Source: The Leukemia and Lymphoma Society Discussion Boards

Bibliography
Anthony, C. 2010. Building community: Bit by byte. eChicago Proceedings 2009.
Lisa West 22 LIS 758 Case Study

https://www.ideals.illinois.edu/bitstream/handle/2142/15442/eChicago2009.pdf? sequence=2 [accessed November 10, 2010].

Arnold, Michael. 2007. The concept of community and the character of networks. Journal of Community Informatics 3 no. 2. http://www.cijournal.net/index.php/ciej/article/view/327/315 [accessed November 10, 2010]. Arrington, Michael Irvin. 2004. The role of the Internet in prostate cancer survivors illness narratives. In Understanding health communication technologies. ed. Whitten, Pamela and David Cook, 181-186. San Francisco: Jossey-Bass. Haythornthwaite, Caroline. 2005. Social networks and Internet connectivity issues. Information, Communication & Society 8 no. 2 [June] http://www2.scedu.unibo.it/roversi/SocioNet/114601.pdf [accessed November 10,2010]. The Leukemia and Lymphoma Society, About, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4414 (accessed October 10, 2010). The Leukemia and Lymphoma Society, Be The Match, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_cal_detail.adp?item_id=617851 (accessed November 28, 2010). The Leukemia and Lymphoma Society, Blood Cancer Resource Directory, The Leukemia and Lymphoma Society http://www.leukemia-lymphoma.org/all_page? item_id=6749 (accessed October 10, 2010). The Leukemia and Lymphoma Society, Calendar, The Leukemia and Lymphoma Society http://www.leukemia-lymphoma.org/all_cal.adp? cal_event_type=10&item_id=6773 (accessed October 10, 2010). The Leukemia and Lymphoma Society, Call Center, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4261 (accessed October 10, 2010). The Leukemia and Lymphoma Society, Employment, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=8623 (accessed October 10, 2010). The Leukemia and Lymphoma Society Fast Facts. 2010. The Leukemia and Lymphoma Society, Financial Support, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4599 (accessed October 10, 2010).
Lisa West 23 LIS 758 Case Study

The Leukemia and Lymphoma Society, Free eNews, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org//all_page.adp?item_id=382456 (accessed October 10, 2010). The Leukemia and Lymphoma Society, History, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=221384 (accessed October 10, 2010). The Leukemia and Lymphoma Society, Illinois Chapter, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=5251 (accessed November 28, 2010). The Leukemia and Lymphoma Society, LLS Blood Cancer Discussion Boards, The Leukemia and Lymphoma Society, http://community.lls.org/community/bloodcancer (accessed November 10, 2010). The Leukemia and Lymphoma Society, LLS CarePages, The Leukemia and Lymphoma Society, http://www.carepages.com/lls? utm_medium=email&utm_source=ExactTarget&utm_campaign=November+201 0+LymphomaLinks&utm_content=gregwest57@comcast.net (accessed November 28, 2010). The Leukemia and Lymphoma Society, National Education Programs, The Leukemia and Lymphoma Society http://www.leukemia-lymphoma.org/all_page? item_id=6746 (accessed October 10, 2010). The Leukemia and Lymphoma Society, Patti Robinson Kaufmann First Connection Program, The Leukemia and Lymphoma Society, http://www.leukemialymphoma.org/all_page?item_id=4582 (accessed November 28, 2010). The Leukemia and Lymphoma Society, Prescription Drug Coverage, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page? item_id=107511 (accessed October 10, 2010). The Leukemia and Lymphoma Society, Stay Informed, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4227 (accessed October 10, 2010). The Leukemia and Lymphoma Society, Team In Training, The Leukemia and Lymphoma Society, http://promosearch.lls.org/search/? sp_a=sp10036b6c&search=&sp_q=team+in+training&sp_p=all&sp_f=ISO-88591&glossary=glossary&x=0&y=0
Lisa West 24 LIS 758 Case Study

(accessed November 28, 2010). Mills, Samantha, LLS Blood Cancer Discussion Boards (DB) Guidelines, The Leukemia and Lymphoma Society, http://community.lls.org/thread/1525 (accessed November 10, 2010). Mills, Samantha, Role of the LLS Blood Cancer Discussion Boards Monitor, The Leukemia and Lymphoma Society, http://community.lls.org/thread/1524 (accessed November 10, 2010). Pigg, Kenneth E. and Laura Duffy Crank. 2004. Building community social capital: The potential and promise of information and communications technologies. The Journal of Community Informatics 1 no. 1: 58-73 http://www.cijournal.net/index.php/ciej/article/view/184/132 [accessed November 10, 2010].

Endnotes

Lisa West 25 LIS 758 Case Study

The Leukemia and Lymphoma Society, About, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4414 (accessed October 10, 2010). 2 The Leukemia and Lymphoma Society, History, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=221384 (accessed October 10, 2010). 3 The Leukemia and Lymphoma Society, Illinois Chapter, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=5251 (accessed November 28, 2010). 4 The Leukemia and Lymphoma Society, Team In Training, The Leukemia and Lymphoma Society, http://promosearch.lls.org/search/? sp_a=sp10036b6c&search=&sp_q=team+in+training&sp_p=all&sp_f=ISO-88591&glossary=glossary&x=0&y=0 (accessed November 28, 2010). 5 The Leukemia and Lymphoma Society, Be The Match, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_cal_detail.adp?item_id=617851 (accessed November 28, 2010). 6 The Leukemia and Lymphoma Society, Call Center, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4261 (accessed October 10, 2010). 7 The Leukemia and Lymphoma Society Fast Facts. 2010. 8 The Leukemia and Lymphoma Society, Financial Support, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4599 (accessed October 10, 2010). 9 The Leukemia and Lymphoma Society, Prescription Drug Coverage, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=107511 (accessed October 10, 2010). 10 The Leukemia and Lymphoma Society Fast Facts. 2010. 11 The Leukemia and Lymphoma Society, Employment, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=8623 (accessed October 10, 2010). 12 The Leukemia and Lymphoma Society, Stay Informed, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4227 (accessed October 10, 2010). 13 The Leukemia and Lymphoma Society, Free eNews, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org//all_page.adp?item_id=382456 (accessed October 10, 2010). 14 The Leukemia and Lymphoma Society, National Education Programs, The Leukemia and Lymphoma Society http://www.leukemia-lymphoma.org/all_page?item_id=6746 (accessed October 10, 2010). 15 The Leukemia and Lymphoma Society, Blood Cancer Resource Directory, The Leukemia and Lymphoma Society http://www.leukemia-lymphoma.org/all_page?item_id=6749 (accessed October 10, 2010). 16 The Leukemia and Lymphoma Society, Calendar, The Leukemia and Lymphoma Society http://www.leukemia-lymphoma.org/all_cal.adp?cal_event_type=10&item_id=6773 (accessed October 10, 2010). 17 The Leukemia and Lymphoma Society, Stay Informed, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4227 (accessed October 10, 2010). 18 The Leukemia and Lymphoma Society, Patti Robinson Kaufmann First Connection Program, The Leukemia and Lymphoma Society, http://www.leukemia-lymphoma.org/all_page?item_id=4582 (accessed November 28, 2010).

19 20

LLS DB post, August 5, 2010. The Leukemia and Lymphoma Society, LLS CarePages, The Leukemia and Lymphoma Society, http://www.carepages.com/lls? utm_medium=email&utm_source=ExactTarget&utm_campaign=November+2010+LymphomaLinks& utm_content=gregwest57@comcast.net (accessed November 28, 2010). 21 The Leukemia and Lymphoma Society Fast Facts. 2010. 22 The Leukemia and Lymphoma Society, LLS Blood Cancer Discussion Boards, The Leukemia and Lymphoma Society, http://community.lls.org/community/bloodcancer (accessed November 10, 2010). 23 Mills, Samantha, LLS Blood Cancer Discussion Boards (DB) Guidelines, The Leukemia and Lymphoma Society, http://community.lls.org/thread/1525 (accessed November 10, 2010). 24 Mills, Samantha, Role of the LLS Blood Cancer Discussion Boards Monitor, The Leukemia and Lymphoma Society, http://community.lls.org/thread/1524 (accessed November 10, 2010). 25 The Leukemia and Lymphoma Society, LLS Blood Cancer Discussion Boards, The Leukemia and Lymphoma Society, http://community.lls.org/community/bloodcancer (accessed November 28, 2010). 26 LLS DB post, August 19, 2009. 27 Haythornthwaite, Caroline. 2005. Social networks and Internet connectivity issues. Information, Communication & Society 8 no. 2 [June] http://www2.scedu.unibo.it/roversi/SocioNet/114601.pdf [accessed November 10,2010]. 28 Pigg, Kenneth E. and Laura Duffy Crank. 2004. Building community social capital: The potential and promise of information and communications technologies. The Journal of Community Informatics 1 no. 1: 58-73 http://www.ci-journal.net/index.php/ciej/article/view/184/132 [accessed November 10, 2010]. 29 Haythornthwaite, Caroline. 2005. Social networks and Internet connectivity issues. Information, Communication & Society 8 no. 2 [June] http://www2.scedu.unibo.it/roversi/SocioNet/114601.pdf [accessed November 10,2010]. 30 Anthony, C. 2010. Building community: Bit by byte. eChicago Proceedings 2009.
https://www.ideals.illinois.edu/bitstream/handle/2142/15442/eChicago2009.pdf?sequence=2

[accessed November 10, 2010]. 31 Arrington, Michael Irvin. 2004. The role of the Internet in prostate cancer survivors illness narratives. In Understanding health communication technologies. ed. Whitten, Pamela and David Cook, 181-186. San Francisco: Jossey-Bass. 32 Arnold, Michael. 2007. The concept of community and the character of networks. Journal of Community Informatics 3 no. 2. http://www.ci-journal.net/index.php/ciej/article/view/327/315 [accessed November 10, 2010]. 33 LLS DB post, November 15, 2010. 34 LLS DB post, July 12, 2009. 35 LLS DB post, November 2, 2010. 36 LLS DB post, July 12, 2010. 37 LLS DB post, November 11, 2010.