Communicating the details of a family member's illness-or even one's own-can be a grinding process involving repeating sensitive facts over and over again to different, well-meaning individuals who want to know the latest status of a friend or family member undergoing treatment. Just keeping everyone informed can be exhausting for patients, families and providers. Technology has stepped in to help spread the word.
Several companies now offer easy-to-create, secure, customized Web sites with access tightly controlled by patients or their families. Clinicians share updates with the patient or family members, and they in turn-via the Web pages-can pass on whatever they want to pass on to whomever they want to know the news. The sites require knowledge of the patient's ID and a password in order to log on, helping to secure the information.
For hospitals, the Web sites help free staff from fielding multiple calls while offering educational opportunities, a chance to receive community feedback and even a boost in patient satisfaction.
At least four companies provide this service, and they've been around for five to six years. They operate by charging hospitals a licensing or sponsorship fee and by collecting individual donations. Although the Web pages-which often are designed to match a hospital's own Web site and link to it as well-can play a legitimate marketing role, concerns have also been raised that their use to deliver extremely sensitive communications might turn into a message board for inflammatory or inaccurate information about providers or become just another advertising vehicle.
Many hospitals do report increases in both patient and staff satisfaction as a result of using these firms. Nurses especially seem to like how some sites allow visitors to send compliments the staff's way, and how the sites free staff from making potentially hurtful decisions about who can and cannot receive patient information.
"Hospital staff says it helps avoid that `awkward HIPAA moment' when they have to stop and think about how much information they can share," says Tom Hills, vice president of market development for Chicago-based TLContact, which operates CarePages, a company offering patient-developed Web sites. Provisions of the federal Health Insurance Portability and Accountability Act of 1996 have made provider disclosure of patients' health status much more complicated.
Ann Converso, vice president of the United American Nurses union, acknowledged that these "HIPAA moments" do occur and said she welcomes anything that can help relieve this awkwardness. "I haven't heard it termed that way, but I like it," she says. "People call all the time and say `This is Joe Schmoe's first cousin. How's he doing?' But unless the person speaking is authorized to get (clinical) information, that's a HIPAA problem."
Kris Olson, director of marketing and communications at Dakota Clinic/Innovis Health in Fargo, N.D., says the number of such HIPAA moments has significantly decreased in the critical-care units and on the medical-surgical floor at her 74-bed facility since it started offering patient Web pages from a not-for-profit called CaringBridge.
"We're not getting as many calls from family members saying `I'm so-and-so's nephew or niece,' " Olson says, adding that the Web sites also provide relief to patients' families. "They don't want to have that emotional conversation over and over and over again. It's an emotional drain."
At Innovis, patients or family members can enter information on the Web sites and answer e-mails they receive through the sites at computer kiosks the hospital has set up in the waiting rooms, Olson says. "It's more of an additional satisfier in that world of Press Ganey stuff," she says, referring to the national survey company that conducts patient-satisfaction surveys on care. "We always look at what do we need to make our patients' stay more comfortable."
Press Ganey Associates' survey of 2.23 million patients at more than 1,500 U.S. hospitals as well as the Hospital Consumer Assessment of Healthcare Providers and Systems survey, or H-CAHPS-developed by HHS and endorsed by the National Quality Forum-are growing influences in how the public views a particular hospital. "Communication issues tend to be at the top of the priority list for healthcare organizations," says Press Ganey spokesman Matt Mulherin. "Things that people do to increase communication and increase sensitivity have big returns." Such information will become even more important as consumers gain incentives to make care decisions based on quality and satisfaction scores.
The new 27-question H-CAHPS survey in particular focuses on how well doctors and nurses communicate with patients, and survey results are expected to be reported next year.
"A lot of it is driven by H-CAHPS, and it's a big driver for us," says John Plunkett, vice president of marketing for Bethesda, Md.-based GetWellNetwork, a Web services company, and he notes that creative use of Internet technology is one way to boost ratings.
GetWellNetwork provides patients Internet access, entertainment and education materials via their hospital-room television. It also can be used to offer quizzes that assess and document a patient's comprehension of their condition and treatment. The services are paid for with an annual per-bed licensing fee that ranges from $750 to $1,500 depending on the size of the hospital and what services the facility chooses to provide.
Plunkett says it's up to hospitals to decide whether to charge patients for the services. He adds that none of the firms that he knows charges for the educational materials and comprehension tests, while some charge for entertainment, games or e-mail.
GetWellNetwork recently expanded its offerings by signing up with CarePages. Licensed at more than 500 healthcare facilities in the U.S. and Canada, for-profit CarePages is one of the leading providers of patient Web sites. Two others are not-for-profit CaringBridge, Eagan, Minn., and theStatus.com, which is based in Anchorage, Alaska, and is legally designated as a for-profit company-but its founder and principal, Mark Pearson, jokes that legal status and reality are two different things.
"Our goal is to break even," Pearson says. He explains that theStatus.com is subsidized by the operation of its parent company, Public Knowledge Systems, which offers database and e-commerce applications unrelated to its patient Web site services.
VisitingOurs.com is another company, started by New York psychologist David Gottesfeld, and it began as a for-profit operation, but Gottesfeld says he recently handed over control of the company to a charitable organization called Team Continuum that provides support to cancer patients being treated in New York. Gottesfeld says he gave the group his blessing to use VisitingOurs.com "as a tool to gain donations for the charity."
Gottesfeld says he "had this vision" to create VisitingOurs.com in 1999 while his brother was in the hospital and he was forever answering the phone to provide another friend or family member an update. "It was a blog before there were blogs."
The other companies offer similar origin stories. Pearson says theStatus.com began when his Web-development skills were utilized to help with communication efforts in 1997 during a family member's illness. About the same time, CaringBridge founder Sona Mehring performed a similar service during a friend's high-risk pregnancy. When CarePages founder Eric Langshur's son was born with congenital heart defect in 1998, Langshur created a Web site so family and friends could track his progress-a project that eventually led to the founding of TLContact in 2000.
GetWellNetwork founder Michael O'Neil Jr. founded his company in 1999, after experiencing loneliness and boredom while recovering from surgery.
These stories would not surprise Mike Magee, a physician who serves as director of Pfizer's medical humanities division and operates a blog at healthpolitics.com. He says patient- or family-developed Web pages are an excellent way of reducing the isolation that a long illness can create.
"I think it's a very good thing, and it's part of what's playing out below the radar screen in healthcare," Magee says. He explains that the Web pages help because they meet the needs of the people receiving care as well as the people providing it.
Communication or marketing?
Because "traditionally, healthcare leaders are not sufficiently in front of the curve," Magee says he does have some concerns that the technology and the service it provides can be hijacked by someone more concerned with marketing to the patient's friends and family than seeing to the patient's needs, or by those who would use the technology to second-guess every clinical decision, resulting in a lack of patient-physician trust.
"That would be a very bad outcome," he says. "At the core of this is the creation of social capital between individuals trying to help each other."
Another bad outcome would be Internet predators using patient Web pages to identify unoccupied homes or homes occupied by vulnerable patients. All four companies say their Web sites use patient ID names and passwords to block unwanted visitors and that sites cannot be accessed by entering patient names into an Internet search engine. Some also use screening programs designed to block inappropriate content or comments.
Disclaimers are posted noting that a hospital is not liable for any of the content on the Web pages, and user agreements specifically tell customers that their pages are not absolutely private since they will be monitored for inappropriate communication. According to the CarePages agreement, users are prohibited from making the Web pages a "mechanism to defame our service or any of its officers, directors, employees, agents, information providers, or healthcare facility sponsors."
"We remind people they can't use derogatory language or be allowed to defame hospitals publicly," Hills says. "We tell folks that we monitor for compliance, and we screen for words like `malpractice,' `lawsuit,' `doctor' or `nurse.' If there's a match, customer support is alerted and evaluates the context. We reserve the right to remove it if it's in violation."
If a Web-page user does have a complaint with a hospital, Hills says CarePages offers to act as an intermediary and put them in touch with the right people at the hospital. Most of the time, however, he says CarePages is called upon to deliver compliments. Its Web pages include a function specifically for forwarding words of praise to hospital staff.
"Compliments-that's the first thing that kicked in," says Joanie Cavanaugh, spokeswoman at Sequoia Hospital, a 205-bed Catholic Healthcare West facility in Redwood City, Calif., that started offering CarePages in March. "That's how we knew people were using it, because we started receiving the compliments."
"Those situations are pretty rare, but one bad apple can ruin everything, so we do monitor for bad apples," she says. "When it happens, we contact the author immediately and ask them to self-police themselves and remove the comment in question. If they don't, we will. Most of the time they say, `Oh my gosh, I'm sorry. I was mad that night when I got home.' "
Patients control access to their Web sites by controlling access to their patient ID name and password, Pearson says, adding that theStatus.com has one very public Web site that has received more than 300,000 visitors. It belonged to champion musher of the Iditarod dogsled race and leukemia patient Susan Butcher, who passed away last month and listed her theStatus.com patient ID and password on her public Web site, susanbutcher.com.
None of the company officials interviewed reported having their services dropped from a hospital because of content issues, and the Association of Trial Lawyers of America couldn't find evidence of patient Web sites being part of any hospital-related litigation.
Cavanaugh says the CarePages sites are "a great thing for patient satisfaction," while also giving nurses more time to provide patient care since they no longer have to field so many telephone calls. She says the hospital has received no complaints from staff or patients, and she endorses use of the pages as a communication tool but notes that she sometimes does have concern about the accuracy of the information users are posting.
Pearson says hospitals have no influence or control over the content of patients' Web sites, and he says the more "legal savvy" hospitals like it that way because the less control they have, the less liability they can incur for the sites' content. He also says that, in the past eight years, there may have been two incidents of "people posting nasty messages," and those were quickly deleted.
While Gottesfeld says VisitingOurs.com specifically is very popular with some large Southern church congregations, patient Web sites have also captured the interest of military families, according to others in the industry.
An official from 261-bed Walter Reed Army Medical Center in Washington declined to comment for this article, but Mehring confirmed that this was true. This relationship was highlighted in 2004, when CaringBridge was featured in the "Doonesbury" comic strip when one of the strip's characters was wounded in Iraq and his wife communicated his progress through a CaringBridge Web site.
"CaringBridge is very well-known by the military community and (Doonesbury creator) Gary Trudeau saw that usage and knew that it was very helpful," she says. "It was a very big surprise to us. It wasn't something we knew of (in advance), so it was fun to see CaringBridge being part of the pop culture."
Pearson says another key to the growth of sites is the ease in which they can be created. To this end, Pearson has senior citizens and others unfamiliar with the Internet come into his office and he observes them as they develop their own pages. If he sees them having problems, he works to make the process easier. Mehring says CaringBridge Web pages can be customized to fit the Internet comfort level of the person creating the site. "We provide Aunt Betty the vanilla version and Johnny Teenager with the cool interface," she says.
Hills says it takes about 2½ minutes to create a CarePages site. But, despite its simplicity, CarePages has plenty of bells and whistles that may endear it to hospital accounting and marketing departments.
First, all CarePages sites are designed to match the look and format of the host hospital's Web site-with that site's link and logo prominently displayed. He says an individual page may remain posted indefinitely but, on average, most remain online for 90 days and attract about 50 different visitors who visit about 20 times each-which offers a hospital "thousands of opportunities to present information that would be of interest to the community," including medical-education materials, notices to sign up for clinical trials and directions on how to purchase items at the hospital gift shop. Everyone who signs up to be notified about a patient's CarePage gets a "welcoming message" from the hospital that includes an offer to opt-in to regularly receive more information from the hospital. Hills says there's a 35% to 50% opt-in rate.
"We're building this environment of trust," Hills says, adding that the person updating a CarePages site is usually the "family healthcare decisionmaker"-the main person hospital marketing departments are trying to reach.
Mehring says CaringBridge offers annual hospital sponsorships starting at $2,500, and sponsoring hospitals get their logo and a link on the patient's site, which she referred to as "co-branded marketing presence." Nevertheless, she says 80% of CaringBridge's funding comes from individual donations that average about $60.
Like CaringBridge, theStatus.com depends on individual donations and hospital sponsorships that Pearson says cost between $10 and $40 per bed annually, with the larger hospitals paying less per bed than small facilities. He says his company used to include links to hospital gift shops, but he removed them in an effort to keep things simple. Pearson says theStatus.com also discontinued any list or database activities.
"We've gone down that road," he says. "But we decided not to make it a big Internet-marketing spam fest."