Home Health Care Support

We describe an application to interconnect health care providers and their patients in the home. The application includes information services, symptom analysis, guidance in the performance of procedures, emotional support, and communications among the health care providers, patients and caretakers.

Keywords:

Introduction

In a time when the 'information highway' and 'health care reform' are media and political buzzwords, if not potent forces for social revolution, home health care is emerging as an industry poised on crest of a wave. The mean age of the US population is increasing, and with it an increase in chronic medical disorders and concomitant cost. At the same time, for reasons of both safety and economy, hospital stays are decreasing. It is expected that Medicare expenditures for home health care alone could reach $30 billion a year by the year 2000, with most of this expense due to home nursing. Patients are becoming critical consumers of health care services in a difficult age of complex and rapidly changing medical knowledge. Health care providers, sensitive to these changes, are focusing increasingly on participatory health care for their chronic long term patients. Providing access to information and patient centered care are emerging as key components of the overall health care delivery system [5].

A key enabler of patient centered care is the expansion of responsibilities of patients and their families relating to the dispensation of health care at home. With this shift to patient empowerment and home care delivery comes the requirement that access to information be provided in the home in a manner that would complement and enhance the information provided by the health care providers - physicians, hospital staff, social workers and the like. This requirement is creating a number of opportunities for the introduction of information technology in the home to support the delivery of health care [1,3].

This realization led to the establishment of the joint project between IBM and the New England Medical Center (NEMC) in Boston. This project focused on a specialty area - pediatric cancer care - to understand the implications of this type of health care delivery. It is expected that the lessons learned from this project will have broad applicability to the general problem of home health care.

Application overview

The goals of the project are to a develop and evaluate a set of applications that will provide new means of interaction between health care providers and their patients in the home. These applications include a broad range of information services, consultation and symptoms analysis, guidance in the performance of procedures, emotional support, and communications to and from the health care provider and among patient and caretaker peers. These applications are expected to form the basis of a family of commercial software products that will enable new types of interactions between health care providers and their patients who need long term home health care services.

The application focuses on the health care concerns of families that have a child with acute lymphocytic leukemia (ALL). ALL is a life-threatening disease with rapid onset. While the prognosis is good for many patients, aggressive inpatient treatment begins immediately following diagnosis. Parents need to quickly absorb a large quantity of complex, distressing information at a time when their ability to do so is impaired due to the enormous emotional stress resulting from the disease and its treatment.

After a month or more of hospitalization, patients are treated intermittently as inpatients and outpatients over a two year period. During this time parents become active members of the health care team, monitoring their child's progress and performing routine health care procedures. Typically, information resources at home are limited, while the questions and concerns are not. Many parents are reluctant to 'hound' staff, and so many questions go unanswered. On the other hand, because of the difficulties in retention, many questions are asked of the staff repeatedly. For the providers, visibility into the patient status at home is poor. Problems reported over the phone are described under stress and from memory making phone consultations difficult.

The current applications address these issues and provide access to a variety of resources. The system offers information sharing and education, patient monitoring, and peer and provider communications. Its user interface is designed for a broad range of patient/users including those who can't type or have little or no computer experience. The interface is easy to navigate using touch and supports a variety of task-appropriate media including audio and video.

System workstations are tailored to the various people participating in patient care. The home system consists of a personal computer with a touch screen color display. A modem connects the system to a central server in the hospital by means of a telephone line. The system supports voice capture and playback and includes a keyboard, though all functions can be performed without it. High capacity disks are used to store patient data, the knowledge base for the system, and the media objects (text, audio, images and video).

The hospital system consists of a server, which is the central repository for patient data and multimedia objects, and connections to participating workstations. The terminals in the hospital provide a patient interface for in-hospital use and a medical provider workstation to access patient related data.

In addition to communications between the patient and provider, the system also interconnects participant patient workstations. It is anticipated that peer communications among patients and their families will be a key factor, perhaps the critical factor, in computer mediated emotional support.

Information sharing and education

The system contains a multimedia library on ALL, covering the disease, its treatment, hospital procedures, home care and emotional support. Information coverage is broad, deep and specific to the needs of the users. Information can be accessed hierarchically through a table of contents, as well as through an index using key words and phrases. Author designated keywords are lexically and morphologically augmented so that users can draw on their own vocabulary to access system content.

The information resource includes a facility to train caretakers to perform procedures used at home. Procedures use a minimalist strategy [2] that directs the user to only those activities essential for procedure performance and lets the user focus immediately on the critical task. Elaborations and parenthetical material are available on demand, but are not interwoven into the primary instruction. An overview of the procedure is always visible to help maintain perspective, and the user can review the entire procedure or go through it a step at a time.

Patient monitoring

The patient monitoring component of the system, called 'Guardian' [4], allows a parent to describe the symptoms their child is experiencing. Through a series of guided questions Guardian attempts to identify the causes of the problem. As the dialogue unfolds, it provides multimedia feedback to the parent on home therapy and the probable meaning of the symptoms in light of patient's history.

Guardian is a knowledge-based component, driven by a set of rules defined by a domain expert. The questions and the order in which they are asked depends on the current condition of the patient and the expert knowledge base defined by the physician. Patient information is kept current both in the hospital and at home.

Guardian can also be used to consider hypothetical symptom scenarios. The parent might want to know what to do if the temperature rises above its current level or what the meaning of hip pain might be even if his or her child is currently pain free. It does this by pursuing the dialog with 'dummy information' without sending a report to the clinic.

Peer and provider communications

Problems encountered by the patient are reported in real time and transmitted directly from the home to the hospital, where there is a running log of problem reports and patient e-mail. This should improve quality and efficiency of care at home by providing the hospital staff with detailed and up to the minute information on the patient.

At the clinic workstation, physicians and nurses review and archive reports and mail, as well as update the patient medical model and administrative data. Facilities are also provided for medical information providers to edit and augment system content.

ACKNOWLEDGEMENTS

Software for the system was developed by the Home Health group at the TJ Watson Research Center. The content was developed by the Home Health group in conjunction with the staff and patient families at the Pediatric/Hematology/Oncology Division of the Floating Hospital at NEMC, under the direction of Dr. Larry Wolf.

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2. Carroll, J.M. The Nurnberg Funnel. Cambridge: The MIT Press, 1990.

3. Gustafson, D.H., Bosworth, K, Hawkins, R.P., Boberg, E.W. and Bricker, E. CHESS: A computer-based system for providing information, referrals, decision support and social support to people facing medical and other health-related crises. In AIMIA's Proceedings, Sixteenth Annual Symposium on Computer Applications in Medical Care, November 8-11, 1992, Baltimore, MD, 161-165.

4. Kim, M. Guardian: A knowledge-based home health-care system for children with leukemia, IBM Research Report, RC19858, 12/94.
5. Wheeler, M. 'Soft wall' technologies coming closer to home. Health Management Technology, March, 1994, 22-24.