Home Health Care and Interventional Informatics

At the April 1995 conference on "Telemedicine - Reality and Virtual Reality," Dr. Ben Ware, Vice President for Research and Computing at Syracuse University, gave a presentation entitled "______________" in which he gave his vision of how telemedicine could promote home health care. It is becoming increasingly clear that this is a major growth area for medical, HPCC and WWW technologies for the 21st Century, and that there is a vast market for this. With the rapid movement towards capitated managed care programs, there will be increased emphasis on prevention and early intervention, as well as continual maintenance in the home of the chronically ill or incapacitated. Having healthcare resources available in the home will encourage people to obtain early medical attention, rather than allow conditions to worsen to the stage where they require expensive medical attention, including hospitalization.

This scheme fits perfectly into the Distributed Medical Intelligence (DMI) model of Warner; specifically the home-properly equipped and connected-can function well as a Care Portal. Welch Allyn Inc., a leading manufacturer of medical instrumentation suitable for such use, is located in Skaneateles Falls in the Greater Syracuse metropolitan area and is interested in participating in our program. The President, William Allyn is a Syracuse University trustee.

As part of our project (see Section __ and Appendix __) with the SU College of Nursing Syracuse and the City School District (SCSD) we are planning not only to provide for routine health care of the general student population, but also to make special care available for students with chronic conditions and severe disabilities. For several years, the SCSD has had an "inclusion program" in which disabled students are mainstreamed.

NPAC is currently working actively with the family of the most severely disabled child in the city's inclusion program, namely 14-year-old Eyal Sherman, who is enrolled at Nottingham High School. After being surgically treated for a brain stem tumor and then suffering a brain stem stroke at age __, Eyal has been a C3 quadriplegic-confined to a wheelchair and constantly on a respirator. Because of his tracheotomy, he is unable to speak. Eyal is the son of Rabbi Charles Sherman, who leads Temple Adath Yeshurun, the largest Jewish congregation in Central New Year. Eyal's case is well known in the medical and educational community, as well as in the general Syracuse community.

Dr. David Warner, Nason Fellow at NPAC is renowned for his work on what he has termed Interventional Informatics (II), in which disabled individuals (quadriplegics, pediatric cancer ward patients, etc.) are able to have enriched life experiences and improved control over their lives. The II approach includes virtual reality hardware (headsets, robotics, etc.) and software, and employs at its core a highly versatile interface arrangement, known modestly as "The Neat Thing." In its current implementation, this includes a small interface box ("The Thing") with 8 electrode pairs (and a ground wire) to connect to the subject, and a cable that connects to the serial port of a PC. The connectivity and functionality of this device is managed by the "Neat Software" which currently runs under DOS, but is in the process of being converted to Java by the original author, Joe Johannsen of San Diego, who is under contract by NPAC for this work.

The electrodes from The Thing are typically connected, as in the case of Eyal, to adhesive conducting patches that are placed in pairs in areas where there is significant activity of muscles, such as those controlling facial expression. The myoelectric signals so obtained can then be used to control devices that are also interfaced to the computer, or they can be used to control the computer itself such as for Web surfing (check if there is a way to do this with the current DOS program if it is run in a DOS window).

Warner wants to make this a significant part if his Ph.D. work under his Nason fellowship at SU and NPAC. Given that Warner is often out of town, the NPAC implementation project on Eyal Sherman is currently being managed by Edward Lipson, who was also the one who brought Dave Warner in contact with the Sherman family. The family had actually seen Warner on a TV news program several years ago, but had assumed he was unavailable to them as he was then in California. It was a pleasant surprise when Warner was brought to their doorstep and then expressed considerable optimism during his initial evaluation of Eyal.

Warner and Lipson are being assisted by Adrian Blanarovich, a Biomedical Engineering senior at SU [?and also by NPAC Junior Scientist, Jiangang Guo?]. We have had Eyal to NPAC for one weekend session in mid-February (1996), and we have since been working at the family's home using Adrian's desktop computer each time. NPAC director Geoffrey Fox has approved buying a computer for the Sherman family to use with "The Neat Thing" once they are trained. A 100 MHz Pentium multimedia PC is on order.

Already, NPAC has provided the Sherman family with an NPAC computer account so that they can communicate with us by e-mail and use Netscape, currently with their Macintosh computer which cannot accommodate the DOS-based Neat software. We have recently shown them how to use Web search engines to obtain information and support on relevant terms such as "quadriplegic," "paralysis," and "respirator." One such search led us to information on the case of actor Christopher Reeve (Superman movies) who was paralyzed by a fall from a horse.

The Sherman family has a remarkably good attitude and internal support system. However, they have been extremely frustrated with the lack of affordable high-tech resources to extend Eyal's capabilities and experiences. They are very excited and hopeful with what we from NPAC are already doing for them. The family has high expectations based on the obvious potential of "The Neat Thing." They are very accommodating about letting us take video recordings during our sessions with Eyal, and subsequently making use of these videos. They have also given permission to having Eyal participate in the forthcoming second annual telemedicine conference (sponsored by SUNY Health Science Center; organized by Dr. Robert Corona, who heads their telemedicine program) at the Syracuse OnCenter in May.

The Sherman family is very concerned about prospective cuts in the NY State Medicaid program, which currently enables Eyal to remain at home with round-the-clock nursing care. Rabbi Sherman wrote a impassioned Commentary article about this in the Sunday January 7, 1996 Syracuse Herald American, The article was headlined "Disabled teen's father: Do the right thing and keep families together." This sort of need and the health care economics should be addressed in our general plans for home healthcare technologies.

We are planning soon to work with the family in developing a Web page for Eyal. This would include public areas describing general aspects of his case as well as personal interests and activities-for example his remarkable high-tech Bar Mitzvah ceremony that took place at Temple Adath in 1995. Along the lines of the School Nurse project, we will also include confidential Web pages for Eyal with specific medical information about his case including emergency protocols and professional contacts (on-line and off-line).

Among our goals for Eyal are enabling him to a) control the computer mouse for DOS, Windows, Web software, including drawing programs; b) enter text so that for example he can do his own homework and even compose his own Great American Novel; c) control his own wheelchair and home entertainment and certain standard electrical devices; d) control robotic devices (e.g. remote-controlled toy car with CCD video camera attached); and e) if possible, develop or adapt software for speech synthesis.

We anticipate that the capabilities and flexibility of these approaches will be greatly enhanced when the Java version of the Neat software is ready. Given the flexibility and scope of the Java language and the reach of the Web, the sky is the limit in terms of the kinds of Java applets that could be used to enhance and extend the lifestyle and capabilities of disabled individuals like Eyal. Note that the roots of the Java language at Sun Microsystems were actually in the control of home appliances and set top boxes, until the advent of the Web and browsers motivated the Java development team to radically change its focus. NPAC scientists are already receiving international attention for Java applets produced to date. They are well poised to contribute rapidly in areas such as II. Further, the design philosophy of Warner and coworkers has been to produce The Neat Thing in a form that is remarkably inexpensive. Even though the market for devices for severely disabled individuals is fortunately limited, there is nevertheless ample market potential for the Javatized Neat Thing and associated applets. The opportunity to greatly enhance the lives of disabled individuals is, of course, an even stronger motivation than the commercial market potential.