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Computers for Kids: Not All Fun and Games
Jacob Weiss
A Shocking Discovery
Helen Sadler arrived for work at University Children’s Hospital (UCH) early Monday morning. She began the day by checking her e-mail, assisted by her usual cup of fresh ground coffee. Not long after taking her first sip, the phone on her desk rang noisily, jolting her awake faster than even the most potent blend of caffeinated black beans.
A mother was asking for help with starting up the computer in her son’s room.
Helen walked down the hall to Room 514 and turned on the computer monitor.
Much to her surprise and disappointment, she discovered several links to “adult-only”
sites on the desktop screen. She quickly realized that she had not reinitialized the com- puter to the default setup before the patient checked into the room. She apologized to the family and immediately wiped the computer clean of the files from the previous patient’s indiscretions. The parents accepted her apology, and they were glad to have the computer ready for use during their time in the hospital.
Helen headed back to her office, rather embarrassed, but thankful that she was able to handle the situation relatively painlessly. It could have been much worse.
Background—University Children’s Hospital
UCH is part of an academic health center located in a major city in the Northwest.
UCH is associated with a medical school ranked in the top 20 and about 50,000 pediatric patients are treated each year by a staff of more than 100 pediatric special- ists. It is a national leader in the treatment of pediatric heart disease, behavioral problems, pulmonary disorders, diabetes, and other endocrine disorders. The UCH units currently are located within the main buildings of the medical center.
Construction for a new, stand-alone children’s hospital began in 2000, and it is scheduled to open for patient care in April 2004. Throughout the development, UCH has emphasized a “family-centered” approach to patient care in the new building.
This strategy involves creating a comfortable environment for both patients and their families and recognizing the role of relatives in caring for the children.
Background—Computers for Children
Around the time that the building plans were getting under way, a project was pro- posed to put personal computers and Internet access in the inpatient rooms of the hospital. The proposal aimed to help isolated children maintain contact with family,
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teachers, and friends at home or anywhere in the world. The computers could also be used by family members to get work done, send e-mails, and communicate with rela- tives. Additionally, they could provide entertainment, education, and relief from the monotony and boredom often associated with staying in a hospital for extended periods of time.
These goals meshed well with the family-centered direction of the new hospital, but it was not easy to secure financial support through the medical center. The center saw the potential of such a system, but the backing came mostly in the form of “Get the money and that’s great!” Outside donations provided $175,000 in funding for the tech- nology, and the medical center paid for the addition of a full-time child life specialist dedicated to the implementation and operation of the project.
Helen Sadler and the Project Team
Helen Sadler was hired for the child life specialist position of managing the Comput- ers for Children project. She has a formal education in child development, with a per- sonal interest and experience in computer systems. She takes on the roles of administrative and technical support for the patients and is the primary contact person for the project. The pilot involves a total of thirty-two computers distributed through- out the pediatric floors of the main hospital, targeting the adolescent unit, the myelo- suppression rooms, and some of the family areas.
Helen continues to get advice from the project manager, Matthew Hunt, who has led the planning since the initial funding was received. Matthew is part of the informatics center at the medical center, and Computers for Children was his first project assignment. He and Helen worked closely during the initial implementa- tion in which they purchased, built, and installed the hardware and software. Once the system was up and running, his role became that of an advisor and collaborator for Helen, but he is not directly involved in the day-to-day activities in the hospital.
Helen’s boss, the child life director, and the original project team continue to function as an oversight committee, and they in turn report to a steering committee of hospital directors.
But in the end, it is Helen alone who runs the program and who deals with the concerns and challenges each day.
Factors Contributing to Reimaging Difficulties
The incident with the pornography in Room 514 occurred in part because of Helen’s admittedly hectic schedule. She makes an effort to wipe the hard drives clean of all personal downloads before new patients move into their rooms, but during a busy week it can be hard for her to reimage the machines before the patients arrive. There are times when a patient checks in before she has a chance to clean the hard drive and install the default software and settings. Usually there are no offensive files left on the computer, and it is not always necessary to reimage, but there is still the potential for another problematic situation.
Helen estimates that she is able to reimage the computers between patients only 75 percent of the time. She spends the majority of her day providing technical support for the patients and families who have trouble using the computers. On top of her regular schedule, each computer takes approximately 30 minutes to reimage by hand. The orig-
inal project proposal planned for the use of “client update push technology,” which allows an administrator to update software from a remote server without having to visit each machine in person. Although desired, the team was not able to purchase such a system with the current funding.
Outside the “In Loop”
As the single staff member responsible for reimaging and technical support, Helen needs to know when rooms change over and when new patients arrive. However, the children’s computer network is completely independent of the official hospital network, and Helen does not have access to the occupancy listings on the main hospi- tal information system. The nurses do not always inform her of room changes, and Helen’s only source for patient schedules comes from daily lunch meetings with her fellow child life staff. They inform her when new families are in the hospital and discuss the general issues and concerns of the patients they have visited.
Because Helen does not work late nights or weekends, room reassignments can occur without her presence. Situations such as these can interfere with her ability to erase potentially harmful downloads after a patient leaves.
Single Username and Password
The method chosen for assigning user accounts on the network also contributes to the reimaging problems. In order to log on to the computers, patients are all given the same username and password. Because each user accesses the computer with the same account, the downloaded files and settings on the desktop carry over between patients unless the computer is reimaged. A potential alternative to this approach would be for Helen to (attempt to) assign unique usernames and passwords to the ever-changing collection of users. Such a solution undoubtedly would add complexity to Helen’s already hectic job of keeping up with new patients.
Is Locking Down the Machine a Solution?
“I think we may lock it down. I know that sounds bad, but lock it down to the point where the patients can’t save anything to the desktop,” Helen explains. “They can save to a disk, or they can attach it to an e-mail.” She does not want to reduce the func- tionality of the computers for honest users, but it is a choice she must make in order to maintain the privacy and security of patients and their families. Because of the dif- ficulties she has faced with reimaging in the current system, this may be a necessary and acceptable compromise that does not limit the computers too severely.
Freedom and Functionality vs. Security and Safety
In practice, the decision to lock down the computers will shape Helen’s capacity to manage the network without additional manpower. However, Helen’s hesitation toward limiting downloads uncovers another issue that cuts to the heart of the entire project’s goals: How much freedom can we give patients on the computers and on the
Internet while still protecting the security of the patients and ourselves? Any answer to this question inherently will affect the potential benefits that patients can get out of the technology.
At UCH, the project team’s approach is first to provide as much functionality as pos- sible and then to deal with individual indiscretions as they arise. Standard measures are in place to protect patients from easy access to inappropriate Web sites, but a deter- mined, knowledgeable patient can still find ways around such controls. The team realistically did not aim to create a 100 percent foolproof network because this would severely limit the usefulness and benefits of the service.
The following examples demonstrate the team’s trial-and-error process of finding the ideal balance between functionality and preventative control.
Filtering Inappropriate Material
In order to limit access to inappropriate and adult-oriented Web sites, a commercial server-based software filter was installed on the network. In addition to blocking the content, Helen initially configured the filter to notify her via e-mail each time a blocked site is accessed. An acceptable use policy defining the network rules in clear and simple language is displayed on the desktop for each user.
Once the project got under way, Helen periodically received an overwhelming number of e-mails from the filter software. When the filter prevented access to a blocked site, some patients or family members would attempt to visit different sites, and Helen was sent an e-mail after each unsuccessful attempt. She responded to the situations by approaching the family and frankly explaining that the computers should not be used to access inappropriate material. She had a list of the visited Web sites, and the family was usually embarrassed enough not to visit blocked sites again.
Helen did not enjoy these uncomfortable confrontations, and she had never expected that she would have to deal with such cases so frequently. She approximates that someone tries to access an inappropriate site on the computers at least once a day, usually searching for pornography. Helen needed to prevent these attempts from getting out of control, but she did not want to constantly lecture the patients.
She changed the settings on the filter to display an additional warning message noti- fying the patient that “An e-mail has been sent to University Children’s Hospital.”
When a patient or family member tries to access a blocked site, they are told explic- itly that they have been caught. Compared to merely denying access to the sites, this simple change significantly reduced the number of repeated attempts to find inappro- priate material.
Downloading Illegal Movies
Another surprise came when Helen received a call from university network security.
Apparently, the university was notified by the Motion Picture Association of America (MPAA) that someone was downloading illegal copies of movies on the university’s network. An e-mail from the MPAA stated that if the person downloading the files was not stopped, they would take the university to court. The network address was traced to one of the computers in the UCH, and Helen had to confront the family to ask if they had downloaded the movie. They denied doing anything, but when Helen looked at the computer, the file was there. The time logs also showed that the incident occurred after the time that the current family checked into the room.
In response to this potentially very serious infringement, Helen took the computer out of the patient’s room for the remainder of his stay. She also took the computer away during the family’s next visit to the hospital. However, the patient’s doctor was upset about this, and Helen explained what the family had done and how they had lied.
The doctor did not insist that she return the computer, but Helen talked to the family again and gave them one more chance. The same family has been in the hospital since that time, and there haven’t been any more problems.
The Web filter blocks illegal sites, and the computer software prevents patients from installing file-sharing programs, but this case demonstrated the potential for knowl- edgeable users to find ways around the filters. As a result, the downloading bandwidth restrictions were increased so that users cannot download files larger than a certain size.
The Health Insurance Portability and Accountability Act and Personal Web Sites
A planned component of the project is to provide children with a Web site to share their experiences in the hospital with friends and family. A Web design company was hired through donations and is in the process of creating templates that will allow chil- dren to easily build their own personal Web pages. In spite of the honorable intentions, the idea of patient Web pages approaches the fuzzy boundaries of publishing patient information on the Internet, and the team has encountered potential concerns related to privacy rules of the 1996 Health Insurance Portability and Accountability Act (HIPAA).
HIPAA issues strict limitations on a hospital’s ability to publish personally identifiable patient information on the Internet. For example, the UCH would run into trouble if the administration wanted to publish information about patients on the UCH Web site. Helen and the team discussed this issue with the university general counsel’s office, and the current opinion on the matter is that if patients put their own informa- tion on their own Web site, it would be analogous to talking to someone and that can’t be regulated. Additionally, patient sites will be physically hosted on a donated server not located at the hospital. UCH will merely function as the portal for patients to access the service.
The Web sites are not yet in place, and there still may be a possibility that HIPAA regulations will limit the extent to which this aspect of the project can be realized.
Instant Messaging
Throughout the pilot, patients were required to get parental permission in order for Helen to install instant messaging (IM) chat software on the computers. This arrange- ment is intended to protect patients from strangers or predators who might IM them.
“Kids are curious,” Helen explains, “and if a new message pops up on the screen, they are going to click on it.” Over time, Helen found that many patients used IM at home, and they typically asked to install the software in the hospital. IM often supplements or even replaces e-mail as the primary channel that children use to keep in touch with their friends and classmates online.
The potential threat of online predators has been a very small practical concern in comparison to the speculative worries of the project team. Patients who use the soft-
ware usually just want to talk to their relatives and friends from home and school.
There have not been any reported incidents of patients being harassed or bothered while using IM software. At a meeting with network security and members of other computing departments in the medical center, Helen and the project team discussed the idea of lowering the restrictions on IM.
“If the patients have IM at home, they’re going to want to use it in here,” she reported to the others. Almost everyone agreed with Helen, and they felt that the benefits of reducing isolation would outweigh the relatively unlikely risk of IM predators. Giving the patients a sense of normalcy is a main goal of the project, and IM is a free and pow- erful means for achieving this goal. Helen is currently exploring different IM programs that she plans to install on all the computers. She has not received a final confirmation from the general counsel’s office, but she does not expect there to be a legal problem with this change in policy.
Challenges in Choosing the Best Technology
The team’s decision to install IM software also illustrates another major challenge of implementing the project: How do we select the hardware and software that will lead to the most effective use of the computers? In choosing to purchase a combination of off-the-shelf technologies, Helen and the team faced the task of finding appropriate user-friendly devices for the various aspects of the project.
Computer Chassis
The physical setup of inpatient-room equipment must provide a way for patients to access the screen and keyboard while lying in bed. Patients and family members also need to have access to the computer while sitting in a chair beside the bed. A design to accommodate these situations was worked out with a leading ergonomic computer cart manufacture at cost.
The carts have a mobile wheel base to which the desktop is secured, and adjustable arms support the flat screen monitor and keyboard. Flat screen monitors are required because of the weight constraints in suspending a monitor over a patient in bed.
Although the carts are physically mobile, they generally stay within the patient rooms.
The base is designed to have a relatively small “footprint” so as not to interfere with the other equipment and people in the room.
Touch Pads
Because of the limited space and the adjustable angles of the keyboard arm on the cart, a standard mouse would be nearly impossible for patients to use in bed. The team researched and selected a touch pad device similar to those installed as the mouse replacement on many laptop computers. This was a seemingly natural and reasonable solution, but after 3 years of the pilot implementation, Helen found that she received more complaints about the touch pads than anything else. For the most part, patients did not like using them and would have preferred to use a regular mouse. In response, Helen is switching to a wireless keyboard with a built-in trackball, which hopefully will be easier to use than the touch pads. Only time, and the number of complaints from frustrated patients, will tell.
Preparing for Special Circumstances
Some patients have unique conditions or circumstances that can affect their ability to use computers. Patients and families sometimes speak little or no English, and a lan- guage barrier might affect their ability to use English-based software and Web sites.
During the pilot implementation, the computers did not have special support for other languages, but most patients were able to navigate to familiar Web sites through the English front end. Helen and the team are now translating the basic instructions into Spanish to help native Spanish speakers become acquainted with the technology more easily.
Amish families usually ask Helen to take the technology out of the room completely, and having mobile carts has made it easy for her to honor this request. Families with extremely sick children have also requested that the computer be removed because it is just one more thing to deal with.The team tried to plan in advance methods to accom- modate children with other likely difficulties, such as vision and hearing impairments, but the limited number of such cases has made it difficult to find the best practical solu- tions. As with the touch pads, the trial-and-error process of finding the right technol- ogy sometimes is the only way for Helen to know for sure if a particular solution will be effective.
Videoconferencing: 90 Percent Work for 10 Percent Benefit
Helen and Matthew worked hard to install Web cameras on the computers so that patients can videoconference with friends, family, and classmates outside the hospital.
For security reasons, they set up the cameras and the network to allow only outgoing video calls, and this task proved to be one of the most challenging aspects of the physical implementation.
Matthew describes the video component of the project as 90 percent of the work for 10 percent of the benefit. Some children have been able to virtually “sit in” with their class at school through videoconferencing, but the cameras are not used frequently by most patients. Nevertheless, video technology has the potential to facilitate highly inter- active programs for the children. Helen is currently talking with people from the local library about putting a camera in the library’s activity room so that patients can par- ticipate in some of their events. With the video infrastructure in place, many more opportunities for education and entertainment may arise in the coming years.
Special Wiring: Avoiding the Hospital Network
The patient rooms had to be wired specially for the Computers for Children project so that it would not interfere with the existing hospital network. Security violations would be much more problematic as part of the main hospital intranet, and the team would also have less control over managing it. Helen needs to filter and monitor the use of the Internet for Web, chat, video, and related components, and it would not be possible to achieve this level of control on the main network.
Because of limited funding for the pilot, only the adolescent and myelosuppression rooms in the current hospital could be wired for the Internet. There are no mobile units to bring to patients in other rooms because there would be no Internet access, and patients usually want computers in order to go online. Even if the team could afford to wire more rooms, Helen would not be able to handle the administrative burden of moving and tracking down computers by herself.
Why Can’t I Have One?
Patients who did not have a computer in their room during the pilot often asked the child life staff why they didn’t have one. The limited number of configured rooms is especially troubling to children who are moved out of a myelosuppression room and into a room without a computer. Once they know what they are missing, it is even harder for patients to imagine life in the hospital without a computer.
The program is expanding to sixty patient rooms and forty public computers, but the additional technology still will cover less than half of the inpatient rooms in the new hospital building. Helen and Matthew are preparing for the disparities between patient rooms by wiring the new hospital based on uniform geography and type of stay. For example, all patients on the seventh floor will not have computers, while all the isola- tion rooms on the eighth floor will be wired for computers and the Internet. This imple- mentation will make it easier for Helen to explain to patients that only certain areas and types of rooms are able to have the technology.
Expanding to the New Building
The project has been funded by additional donations to expand to 100 total comput- ers in the new hospital, and UCH will continue to support Helen’s position on the child life staff. In order to justify expansion of the pilot to the new hospital, the project team designed interviews and surveys to evaluate whether or not the program has met its intended goals. But in the midst of managing the day-to-day activities of the pilot, Helen was able to conduct only about 40 of the planned 100 to 200 interviews. She did not end up preparing a spreadsheet of the responses because there was not a signifi- cant sample size of data. However, many families have expressed gratitude for the computers, and a great deal of anecdotal evidence illustrates the positive impact of the project.
In expanding to the new building, the benefits of the technology will be received by many more patients, but the workload and challenges that Helen currently faces also will be amplified. Doctors and nurses usually compliment the program, but Helen does not know what will happen when all the nurses and doctors in the hospital have to interact with the system. During the pilot, several nurses have helped children with basic computer issues, but one nurse said, “I always feel so stupid when they ask me and I don’t know what to tell them.” Helen also worries that with more computers and more potential problems, children will have to wait longer before she can get to all of the rooms.
She and the team estimate that with more than 150 computers, Helen definitely will need backup to do her job effectively. With only 100 computers planned for the near future, she will do her best to gracefully manage the inevitable challenges and surprises that lie before her.
Questions
1. What challenges can you envision for Helen in trying to manage the additional computers in the new building? How might the other hospital staff respond if the expansion is too much for her to handle alone?
2. The computers will be ubiquitous throughout the patient rooms of the new build- ing, but the project is not a financial or organizational priority for the hospital. In addition to the examples witnessed during the pilot, what future difficulties might arise from this potentially conflicting arrangement?
3. Where would you draw the line between functionality and security? Are the bene- fits for the patients worth the potential risks of a relatively open system?
4. Should the team be conducting a more thorough and continuous evaluation of the project to ensure that they are meeting their goals? How might they do this effec- tively without extra manpower?
5. In what ways do the limited support and funding affect the choices in balancing patient freedom and preventative control (and vice versa)? Consider issues related to technology, administration, project goals, or any other area that you feel is important.
6. Pick one or two specific situations from the pilot and explain what you would do and why.
