University of Quebec in Montreal
succ. Centre-ville, Montreal H3C 3P8
Research assistants: Maryse Rivard, Yves Bougault, Jean-François Garneau
Aging society, state deficits and increasing social demand on health services bring up pressures to raise productivity by use of new communication technology. The Internet and home automation already offer interesting possibilities such as better health care services provided more and more on a home basis, implying closer links between different organizations (e.g., hospitals, public home care service providers, private agencies, emergency services, and rehab centers).
An ongoing project with a local community services center, the University of Quebec in Montreal, a general hospital, a rehab center and other institutions will be described here. This research project directed toward the home maintenance of dependent people is trying to combine the use of home automation, Internet services, architectural changes, and telemetry and other telemedicine devices in order to create a new sociotechnical environment for patients with handicaps as well as post-op, multiple sclerosis, Alzheimer's and other types of profiles. A study followed by a 10-dwelling experiment is under way.
To develop such an environment, we first need to define a conceptual framework and a methodological framework. The latter includes two momentums: a study part, implying the acquisition of knowledge on the subject, and an experiment planning and evaluation part.
Our conceptual model is based on systemic theory and structuro-functional theory. The first considers relations and feedback in a chain of interrelated events; the second considers the link between synchronic structure and diachronic process directed toward the achievement of new goals. In our case study, the main goal is autonomy maintenance of the individual. Autonomy is being defined as the possibility to decide to act and also of that action being performed on the environment in order to obtain a specific result. For home care patients, this means, in more operational terms, being able to reestablish a link with their usual environment or even with an entirely new one if necessary.
We already know that some events can break the link between the individual and the individual's physical and social environment. Sickness or injuries are such events. Characterizing our target population starts by looking at the statistical distribution of these link-breaking causes and also by looking into how it affects the relation between patient and environment through the activities the individual can no longer perform or the result he or she can no longer achieve through these actions. To reestablish a proper link means using compensation methods through human and technical services. These services can be seen as a vast sociotechnical prosthesis.
Starting from this conceptual standpoint, to create an adequate sociotechnical environment capable of restoring autonomy means developing a methodological model directed toward knowing what is needed and, from there, knowing how this new environment can be created, holding into account what already exists (human or machine assistance possibilities). Thus, it is necessary to investigate the following:
The first part of our study is oriented toward defining and investigating the nature of the person's disability, its cause, what type of activities it affects and what is needed to allow the restoration of at least the usual results of the person's actions. We call this "patient profiles."
Once we know what is needed, if we want to improve or create a proper sociotechnical environment for autonomy reestablishment, it is important to know what care and assistance practices (by the individual's social network or by external services) and what technical support devices are already involved to restore autonomy. This study is not limited to home care. It has to look into the institutionalized patient's world because some institutionally based care practices and techniques could eventually be applied in a home environment, given the proper technological and organizational support.
Reestablishment of the individual-to-environment link is most of the time partially reinstated by compensating practices or devices that are already in place. What is left to be done to complete this link is what we are concerned about here. A fulfilled need by some external action no longer requires development of a, for the time being, nonexistent type of response. But we need to identify at the same time the needs already responded to and the ones that are not fulfilled. This is important in order to create a new technological assistance combined with a new organization of human assistance and care practices in the home environment.
Once we know about the fulfilled and unfulfilled needs and about already developed means of response, we have to look at the possibilities offered by new technologies and at the organizational implications of their implementation. We also have to look into the new organizational modes and new practices that might emerge from these new settings when they will be implemented.
Here is where the Internet, home automation, medical telemetry and other telemedicine devices come into play. We have to interrelate these new possibilities with actual needs and actual assistance or care practices and devices. It is also important to look over the cost-advantage aspect of using these new possibilities.
Following this general introduction we will briefly present some preliminary work done toward applying the methodological framework previously explained.
Since we are at the beginning of the research process, for the moment, we only have characterized our target population in global statistical terms. Since our project implies an experimental aspect that will follow the preliminary detailed study, we have to investigate a specific target population. This population is located in the center of Montreal in a sector called Plateau Mont-Royal (PMR). Globally, it is a lower-middle-class, partially gentrified area.
PMR population has decreased by 7.5 percent between the two census years 1986 and 1991. The vast majority of the home health care and assistance clientele (approximately 2,000 cases per year) of the local public home health care (and other community services) center commonly called CLSC are over 65 years of age. Of the Plateau Mont-Royal's population of 50,000, the elderly population represents 13.1 percent. This subgroup is living primarily in private rented dwellings (88%), mainly three-story plexes. Twelve percent of the population live in institutions.
Also, 45 percent of the elderly population is composed of single-person households compared to 24.6 percent in the rest of Canada (Canadian mean). This isolated elderly population in central urban settings is usually considered to be more vulnerable than other subgroups. Since 1981, the population living alone in this area has considerably increased by more than 10 percent. Mean income is $24,537 compared to $31,068 in the rest of the Montreal region. The number of people living on welfare and other government subsidies is almost 25 percent greater than in the rest of the metropolitan area.
Home health care services include medical care, nursing, special services like physiotherapy and ergotherapy, and home assistance (domestic work and the like). Plateau Mont-Royal's Local Community Service Center serves over 2,000 distinct individuals each year. These individuals receive approximately 40,000 home care service acts. The CLSC deals with about 500 cases simultaneously.
The nature of health problems being dealt with on a home care basis by the PMR CLSC is distributed in the following manner:
Circulatory diseases 20% Diseases of the endocrine system 15% Traumas and poisonings 15% Osteo-articulary system diseases 5% Respiratory diseases 5% Mental health problems 4% Skin and tissue diseases 4% Tumors 4% Total 100%
Most home care patients are elderly long-term-care cases. In the last two years, with cuts in the health sector, there has been an important increase in the home care of post-op patients and an increase in the use of private home care agencies paid by the public service center, even under a universal free government health plan regime, introducing therefore new service management problems. The planned study will have to take these new circumstances into account.
Each type of problem has to be addressed in terms of type of human or technical intervention. The health problems are statistically divided as follows (by percentage of total number of interventions):
Nursing and medical 30% Home assistance 57% Social and psychological services 12% Specialized services (ergoth., etc.) 1% Total 100%
Also, human care and assistance not only depend on institutional services, but also a lot on the individual's social network. The planned study is currently looking into the help offered by family, friends and neighbors. Additionally, each patient profile by the nature of the problem must be examined in technological terms: technical devices used and the like.
Once the previous study parts are completed, we will be looking into the patients' unfulfilled needs and also into new ways of dealing with the currently fulfilled ones.
Here is where the Internet, home automation and telemedicine technique possibilities come into consideration. During our research, there has to be an interactive movement between present reality and new technological possibilities. On this issue, we first need to inventory what the Internet and other technologies can offer for home health care services before trying to find new solutions to create a better sociotechnical environment favorable to the increase of autonomy.
As you will see next, the Internet is not only a technology that can be used for that purpose, but it is also a powerful research tool.
Let's change the mood for a few seconds. Picture the great ocean scenery in your mind. At sunrise, you're sitting in a fishing boat, but you have no net, no harpoon and no line. Suddenly inspired, you shout the name of a fish that's just perfect for sushi and, a few seconds later, it jumps out of the sea into your lap.
On the Internet, you will find these dream-like conditions, with the fish answering to its name. You are doing the fishing, your computer is the boat, and the information coming to you almost by itself is the overachieving fish.
By the way, the vocabulary of the Internet already picks a lot from the marine lexicon words, which convey in cyberspace context interesting ideas, the first one being the word "net" in fact, with its double meaning of fishing gear and network. One can "surf" the Internet, navigate on it, but also dive in, which alludes to the sensation of being totally immersed, or even drowned, in information. On the Net, all you have to do is name a tiny parcel of what you're looking for to make a huge catch of knowledge.
For example, to meet our project's purposes, we threw the word "telemedicine" in the ocean of the WWW, under the Health & Medicine title, and received in the following minutes a list of lists from government and university sites in the United States, France, Canada, and Quebec and from the U.N. World Health Organization. There was for instance a 1,634-feature bibliography.
Other words as well gave interesting results. A glance at the collected information allowed us to classify it under five great categories, each divided into subcategories:
The Internet offers hundreds of health-related sites belonging to special interest groups (SIGs) who exchange information about topics such as AIDS, community health care, or performance evaluation of new medical instruments. One of the best features of these "meeting places" is the holding of "asynchronous conferences" involving specialists from around the world who participate on certain topics at the time of their choice and receive a summary of the proceedings later.
Finding one's way among these numerous sites can be made easier by looking at listings. It's a good idea to subscribe to a few updated lists in order to follow one particular field's developments. Once you participate, you can receive advice from experts worldwide, without thinking about distances or time zone changes.
Many specialized important health organizations have sites offering useful information and access to many other sites. For example, government or paragovernment agencies publish clinical reports, evaluation of new medical technologies, lists of cancer-fighting or toxicity prevention resources, and so on.
Community health networks offer important information about subjects such as vaccines, sickness and accident prevention and about health policies for schools or day care centers. On similar sites, people with disabilities will find many tools to improve their level of participation in any aspect of social life.
The medication and biotechnology industries are sponsoring research projects that have sites linking multinational companies, scientists and the general public--a growing trend that can greatly impact the managing of health care services.
On top of providing a link with more and more medical databanks and the national health report of several countries, the Internet now includes multimedia accesses, complete with sound, moving images and real-time interactivity, offering educational tools such as virtual hospitals or clinics that have manuals both for students in medicine and certain patient categories.
Numerous medical libraries open their files to browsers, providing for a small fee contents that are hard to find locally or that don't belong to the public domain.
On the Internet, there are sites designed to offer or to seek health-related jobs, either among the SIGs or among specialized agencies, some of which claim to represent the fastest-growing job sector of the next century, a claim backed by the general statistics on population aging.
Otherwise, consultants assist health care providers in their efforts to improve care for their patients and for their staff morale and organizational profitability.
A subject more directly linked with our practical purposes is telemedicine. Telemedicine can be defined as the use of telecommunications for medical diagnosis and patient care. It involves the use of telecommunications technology as a medium for the provision of medical services to sites that are at a distance from the provider. The concept encompasses everything from the use of standard telephone service through high-speed, wide-bandwidth transmission of digitized signals in conjunction with computers, fiber optics, satellites, and other sophisticated peripheral equipment and software.
Telemedicine can be divided into three areas: (1) aids to decision-making, (2) remote sensing, and (3) collaborative arrangements for the real-time management of patients at a distance. As an aid to decision-making, telemedicine includes areas such as remote expert systems that contribute to patient diagnosis or the use of online databases in the actual practice of medicine. This aspect of telemedicine is the oldest in concept.
Remote sensing consists of the transmittal of patient information, such as electrocardiographic signals, x-rays, or patient records, from a remote site to a collaborator in a distant site. It can also include transmittal of grand rounds for medical education purposes or teleconferences for continuing education.
Collaborative arrangements consist of using technology to actually allow one practitioner to observe and discuss symptoms with another practitioner whose patients are far away. This raises important issues of referral and payment arrangements, staff credentialing, liability, and licensure potentially crossing state lines. Two-way work stations that provide smooth digital motion pictures have been integral to the long-distance, real-time treatment of patients. As new technology is found, collaborative arrangements are the future of telemedicine.
The project is planning to use all of those resources and aims at creating other types of Internet uses for home health care practices. It also plans to combine the Internet with the use of other technologies and with the experimentation of new organizational and managerial modes of service-rendering if proven cost-effective.
As we said before, the final stage of this project will focus on trying to implement these new sociotechnical modes and to evaluate them on an experimental basis in order to use them on a more regular basis, which is the final aim of this project.
Even though there is no miracle solution to encourage autonomy, introducing new organizational practices and new technological support tools through the Internet and other technologies can certainly help. It must be done with a perspective that increases health service quality--for example, by opening ways of offering better service coordination and faster provision of medical or nursing acts while at the same time reducing health costs.
The project will lead to the definition of a new methodology and new electronic tools and will encourage cultural change in the health sector directed toward the use of new methods and tools.
During the project, a special electronic feedback process with service providers in the field and some home care patients and/or their families will be trialed on the project's Internet site.
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