The State of the Care Cure Community
March 18, 2002
by Wise Young
The CareCure Community began on July 24, 2001. The CareCure Community is an Internet web sites: the CareCure Forums and the CareCure Community Site. The former is a bulletin board while the latter is our home page containing articles on spinal cord injury (SCI) and other issues of interest to people and families with SCI.
CareCure Community Site Statistics
Over the past eight month, the CareCure Community has grown both quantitively and qualitatively. Numerically speaking, the Community was a just small band of about 200 members on August 1, 2001. The site now has over 1600 registered members (figure 1) who have posted nearly 24,000 messages on the site (figure 2). Between 4000-6000 people visited the CareCure Forums per week in 2001. The traffic fell during the weeks that followed September 11 and during Christmas but picked up dramatically in 2002 (figure 3). Over 6,000 people (registered and unregistered) have visit the CareCure Forums each week during the last two months. In the past month, over 35,000 visitors visited the site. In the past week, over 10,000 people visited the site. The average visitor spends about 10 minutes and views 10 or more pages per visit. The number of page views has tripled from about 4000 per day to over 12000 (figure 4).
Figure 1. Registered Members. The number of registered members has progressively increased over the past eight months, from less than 200 in August 2001 to over 1600 in March 2002.
Figure 2. Number of Postings. The number of postings likewise have increased from several hundred to about 24,000 over the last 8 months. The number of postings appears to be accelerating.
Figure 3. Page views. The number of page views has more than doubled between August 2001 and March 2002. Note the significant dip in the number of page views around September 11, 2001 and also around Christmas 2001. The site is used most during the weekdays.
Figure 4. Number of visitors per week. The number of visitors per week (both registered and unregistered) remained fairly constant during the first 6 months, about 4000-6000 per week. The number of visitors declined after September 11 and during Christmas. As more are registering and returning to the site, the number of visitors has increased during the past two months.
The Care Cure Community
The CareCure Community is growing rapidly. People are registering at the rate of 200-300 per month. Despite the rapid growth of the community, the CareCure Forums continues to have a strong community feeling. People are remarkably supportive and courteous to each other. Many members give unstintingly of their time, their personal knowledge and experience, and expertise. Experienced members of the community are taking new members by the hand and guiding them through the maze of information. Many have posted detailed descriptions of their experience with clinical trials or alternative therapies.
The CareCure Forums has a core group of dedicated users, as illustrated by the following statistics over the past 6 months:
Visits. Over 348 members have visited the site over 50 times, 242 over 100 times, 136 over 200 times, 84 over 300 times, 56 over 400 times, and 39 over 500 times in the past 8 months.
Posts. Many members post extensively. Over 238 people have posted over 10 messages, 80 posted over 50 messages, 42 have posted over 100 messages, and 9 people have posted over 500 messages.
Views. Over 658 members have viewed over 100 pages of the site (the equivalent of a small book), 354 have viewed over 500 pages (the equivalent of a big book), 255 have viewed over 1000 pages (the equivalent of a very large book). Over a dozen members have viewed over 20000 pages, suggesting that they have read virtually every post
A high percentage of registered members have spinal cord injury. Over 72% of the registered members have spinal cord injury. Approximately 40% of the members have cervical spinal cord injury, 32% have thoracic/lumbar injuries, 3% have multiple sclerosis, 13% are family members. About 7% of the members are doctors, scientists, nurses, or therapists who care for people with spinal cord injury; about half are themselves spinal-injured. About 10% of the members are from outside the United States, including India, Australia, Germany, England, Turkey, Iran, Brazil, France, Russia, and other countries. Most of the members are male (62%). A majority of the members are young adults: 27% are under 30 years old, 56% are under 40 years old, 83% are under 50 years old, and 96% are under 60 years old.
Members can link a picture to their profile. However, many people have chose to send their pictures to be displayed on a members page. These pictures often include members of their families, children, and friends. Recently, we upgraded the forums to allow people to attach pictures directly to postings. In two days, dozens people posted favorite pictures that have been viewed by over 1000 people. Members are sharing their lives and innermost thoughts with each other. Thus, clearly, this is clearly a true community.
Figure 5. Visits by Members. Over 1600 members have visited the site, 348 have visited over 50 times, 242 have visited over 100 times, and 39 have visited over 500 times.
Several characteristics distinguish CareCure Forums from all other spinal cord injury (SCI) Internet bulletin board sites. First, the quality of postings is very high. Most of the message give well documented information with extensive links to published literature abstracts or new articles. Second, the information is timely. Almost all news and developments relevant to care and cure of spinal cord injury are posted and discussed within hours, sometimes minutes. Third, the postings cover all issues relevant to the community, ranging from detailed scientific discussions of research findings to practical advice on nitty gritty details of care and life of spinal cord injury, including caregiving, social, economic, recreational, and political issues relevant to the community. No other site provides information of such quality, depth and breadth.
The site originally had five forums: care, cure, life, trials, and feedback. At the request of users, eight additional forums were established: caregiving, funding, pain, sex & relationships, travel, sports & leisure, doctors & clinics, exchange, and links. Figure 6 lists the distribution of postings and views of the forums. The Cure Forum provides news and views on curing spinal cord injury and is the most popular (45% of views, 36% of posts). The Care Forum is moderated by five experienced spinal cord injury nurses (18% of views, 20% of posts). The life forum is concerned with living with spinal cord injury (16% of views, 20% of posts). The Sex & Relationships Forum, although it began three months ago has also been popular (7% of views, 7% of posts). The Caregiving Forum is for family and spouses (2% of views, 2% of posts). The Research Forum lists recent scientific articles (1% of views, 2% of posts). The Trials Forum lists all known clinical trials and studies of spinal cord injury therapies (2% of views, 1% of posts). The Doctors & Clinics Forum lists favorite doctors and clinics.
A number of topics have been very popular. For example, several topics have been viewed by thousands of visitors and hundreds of postings. One of the most popular topics is a blow-by-blow diary of one family's trip to Ecuador to have experimental surgery by Dr. Carl Kao. Another describes a trip to Taiwan for treatment with a peripheral nerve transplant and a growth factor cocktail. Others have described their experiences in clinical trials. These discussions of the actual experience and recovery of individuals who have gone for experimental and alternative therapies are unique. The community can share vicariously with the experience and judge for themselves the merits and risks of such therapies. There is a strong sense of altruism in the sharing of these experiences, so that others can benefit. The CareCure Community is a real community.
Private forums have been set up recently to allow subsets of the community to communicate privately with each other. This is a new service provided by the site. For example, moderators have a private forums to discuss new ideas and approaches to enhancing the site. Several forums are dedicated to private groups of doctors and scientists who use the service to share and discuss data. These forums can be either visible or invisible to the public. Members can also establish their own private topics and designated people that can view or post in those topics. This is useful for people to share information that they are unwilling to broadcast publicly. For example, some caregivers are reluctant to post on the site for fear that the people that they care for may see their postings. The forums provide a highly secure communication system for subgroups of members to communicate with each other.
Figure 6. Percent Post and Views of Forums. The distribution of postings, recent views (last 30 days), and total views (since August 2001) indicate that the Cure Forum is by far the most popular, followed by Care, Life, Sex, Pain, Caregiving, Research, Funding, Feedback, Sports, Trials, Links, and Doctors. The Others refers to private forums.
Polls of the Community
The Forums also allow users to conduct polls of the community. These polls allow a choice of five options and each member can vote only once. Users can post their own polls. Due to the large number of people and families with spinal cord injury who visit the site daily, these polls suggest that the spinal cord injury is well represented by the membership of the site. Although these polls are not scientific samplings of the community, they provide valuable and very interesting insights into spinal cord injury and the community. The following examples illustrate
¥ How many with people drive? Of 120 people who voted, 78% indicated that they hold valid driver's licenses and are driving after injury. This is a remarkable statistic, given that a majority of the registered members who have spinal cord injury indicate that they have cervical spinal cord. Six percent of the voters indicated that they hold valid driver's licenses but do not drive. Only 17% of the people indicated that do not have valid driver's licenses and do not drive. This is consistent with other reports in the published literature indicating that as many as 75% of people with spinal cord injury have valid driver's licenses and are driving.
Figure 7. Driving Poll.
¥ How many people with spinal cord injury also had traumatic brain injury? Several studies have suggested that as many as 25% of people with cervical spinal cord injury had concomitant traumatic brain injury. The following poll asked whether people had TBI and whether it was mild, moderate, severe, or very severe. A total of about 23% of 100 respondents indicated that they had some form of brain injury associated with their spinal cord injury. This number is a little higher than expected considering that about 40% of the members have thoracic spinal cord injury and the risk of traumatic brain injury is highest in cervical spinal cord injury. However, if one excluded those with "very mild" injury, the poll suggests that about 15% of our SCI community has had traumatic brain injury. This is reasonably close to published data.
Figure 8. SCI and TBI.
¥ How many people had sex after spinal cord injury? The following poll asked whether people have had sex after spinal cord injury and when. The results are very interesting in that they counter a common misunderstanding about the ability of people to have sex after injury. Although only 58 people responded to this poll, 12% indicated that they had sex "right after SCI", 31% said that they had sex within 6 months, and 17% indicated that they had sex from 6-12 months after injury. So, over 60% of the people who responded to the poll said that they had sex within a year after spinal cord injury.
Figure 9. Sex after SCI.
The CareCure Community Web Site
The CareCure Community forums are linked to and supported by the main CareCure Community web site (http://sciwire.org). This site holds over 50 articles and summaries of spinal cord injury research topics. A database of frequently asked questions and answers is being constructed and will provide summaries and links to information in the main web site and forums, including lists and descriptions of all the clinical trials, doctors & clinics, and support services available to the community. Plans are being implemented to add a chatroom and member web page support. Most of the articles on the CareCure web site were stimulated by frequently asked questions concerning research and care.
The web traffic to the CareCure Community web site comes mostly from the CareCure Forums but it does attract and drive substantial traffic to the Forums. Because it is a "flat HTML" site, it is hospitable to search engines. Partly as a consequence, many of the articles on the CareCure Community web site are listed on the top of search engine lists when people look for information on spasticity, bladder infections, regeneration, etc. When they come to read the article, they find that there is a very active community and forum that they can join. The steady accrual of new members to the forums is in part related to this link. More important, the web site is responsive to its membership and the content development is driven by interactions with the users.
Analysis of the access logs of the CareCure Community web site indicate a progressive rise in traffic since October 2001. In the past six months, over 50,000 visitors have visited the site. A detailed analysis of the last six month of web traffic to the CareCure Community web site is available at State of the Community (Analysis).