The complexity and challenges of diagnosing, treating, and living with Lupus is the concern of individuals with Lupus, their families and friends, the Lupus Erythematosus Society of Alberta, and health professionals dedicated to their care.

It is recognized that knowledge is power in managing this illness and significant strides are required in deepening and sharing this knowledge and disseminating it in a more timely fashion amongst all parties.

The goal of the Lupus HealthNet is to serve the individual with Lupus and their families, with programs and services in a supportive communication network that brings together the expertise of all those individuals and groups who participate in their care: family physicians, rheumatologists, other specialists, physiotherapists, pharmacists, psychologists health care has developed from experiences gained from the Lupus clinic at the University of Calgary, a vision of future health services proposed by the dedicated Rheumatologists of this Clinic, and a five year strategic plan that the Lupus Erythematosus Society of Alberta has initiated.

The Lupus Clinic at the University of Calgary currently combines clinical care, diagnostic and laboratory services, and research programs. The clinic closely tracks over 150 individuals with Lupus in Southern Alberta. Similar clinics are in operation throughout Canada and the United States, and in 1990, Calgary joined with eight other North American Lupus Clinics under the umbrella of the Arthritis, Rheumatism, and Aging Medical Information System (ARAMIS) to develop a common database of over 2000 individuals with Lupus.

This database provides the opportunity to perform longitudinal studies, and through questionnaires that are mailed out twice a year, such issues a health, disability, well-being and treatments can be tracked. It provides an invaluable tool to develop new programs and services from the insights gained in this information.

The results from past and upcoming questionnaires, along with verbal input from patients has helped us evolve the concept of the Lupus HealthNet. Our hope is the HealthNet will serve the estimated 2500 individuals with Lupus in Southern Alberta and expand to further 2500 located in Northern Alberta.

EDUCATION PROGRAMS

One of the principal goals of the HealthNet is to educated individuals with Lupus and their families, as well as the health care professionals involved in their care.

In a recent phase of the Lupus Pool questionnaire, participants were asked to rate their level of knowledge about three different aspects of Lupus: tests, medications, and disease outcome. In all three categories, just over 50% of the 641 respondents claimed to have some knowledge about Lupus; approximately 20% said they have a lot of knowledge; but a significant 30% indicated the had very little or no knowledge of Lupus. The same patients were also asked to indicate which typed of educational tools would be most helpful to them in order to increase their knowledge about Lupus. Approximately 80% of the respondents indicated that educational computer programs and/or video presentations would be helpful ways to learn - a high indication that technology is a key to effective education. Many patients also prefer traditional educational methods such as brochures and lectures. Over 60% were interested in interactive styles of learning, such as workshops and self management classes.

Armed with this information, we are looking to perform further needs assessment and develop interactive education programs, such as self management workshops, and utilize technology to a much higher degree. However, we a cognizant of various challenges that present themselves in developing education programs.

The growth of Canada, with an increasing number of people and ethnic backgrounds, emphasizes the importance of providing quality, accessible health services to all people with Lupus. This is all the more important as a higher incidence of SLE among aboriginal, asian, and black populations has been reported. Language aside, patients with different cultural backgrounds and religious affiliations will have varying attitudes and expectations about health care, as well as different needs.

To address these issues, as well as problems posed by geography and mobility, we will be investigating outreach programs, distant education programs, and utilizing other community resources to help us deliver these programs and services.

We are also targeting education programs to health services professionals involved in Lupus care. A primary focus will be Family Physicians. Through various educational media we hope to increase their knowledge and understanding of Lupus, its treatment and management, medication use, and which specialists to refer the patient to. Continuing Medical Education programs are also being explored for both Family Physicians, Rheumatologists and other Specialists. Again, technology will play a key role in the delivery of this education in order to deal with remote geographic areas, and the busy schedules of all doctors.

ADVANCED DIAGNOSTIC AND LABORATORY SERVICES

Due to the nature of Lupus, laboratory tests are a key element in diagnosing and understanding the course the disease is taking. However, tests such as the Anti Nuclear Antibody (ANA) requires interpretation by both the lab technician and the doctor, and can be subject to error. One of the objectives is to provide the best tests at the right time, and ensure superior quality of services through better coordination and standardization of testing. Centralized historical data will also be maintained on each patient, which provides a historical view of the disease, but is also invaluable in conducting new and exciting research related to antibodies, genetics, and immunological testing. The Lupus Clinic has been collecting sera since the early 70’s, and with funding support from LESA, over 7500 samples are being catalogued on computers for easy retrieval.

CLINICAL PROGRAMS

Coordination of clinical visits, medical records, and referrals is required to ensure that the individual is seen by the appropriate doctor at the appropriate time. The clinical coordinator is key to ensuring that individuals are directed to the education programs, that follow-up occurs after a clinical visit, and that standard records and effective communication occurs from referral visits.

RESEARCH AND REFERRAL NETWORKS

Exchange of knowledge and expertise is critical to the success of managing Lupus and potentially creating significant break-throughs. Research on SLE and related conditions, such as immunological mechanisms, clinical drug trials, and diagnostic tools will be more easily exchanged between major research sites. Currently the Lupus Clinic has links with Saskatoon, Toronto, Montreal, Chicago, Pittsburgh, Nashville, Stanford, Sacramento, Houston, La Jolla, Tokyo, Italy, and France, and we wish to develop further network connections provincially, nationally, and internationally.

A referral network will also be implemented, which not only includes doctors specializing in Lupus care, but other health services professionals and organizations, and community resources.

INFORMATION SERVICES

Underlying all of these programs is the use of new and innovative technologies. Information services will select and implement these technologies and networks to provide the infrastructure for achieving the goals of the HealthNet. With technology we are no longer limited to a location or facility, we can interconnect many people and organizations to bring the expertise together to serve each individual and their particular needs.

In order to implement this ambitious undertaking, people with skills and expertise in these areas are required, along with the necessary technology. Five years operation is required to perform proper needs assessments, develop the programs and implement them, fine tune them , as well as to perform evaluations and test their transferability to other centres. Ongoing evaluation will ensure accountability for all programs and services; it will also be means of identifying areas of needs that are not being met. Thus we will create a cost-effective, innovative model for managing immunological disorders.

Although faced with many challenges, through networking on both a human and technological level we can make a difference in the quality of life of those suffering with Lupus.