Contact Louise Bergeron louise383@sympatico

1. Working to Create Partnerships in HealthCare Management: A Look at “Empowering Patients as Active Partners in their Care: Lupus Interactive Navigator (LIN)” L.E. Bergeron, P. R. Fortin, D. DaCosta, M. Rochon, C. Neville, E. Aghdassi6 Results Study Aim & Background Systemic Lupus Erythematosus (SLE) is an inflammatory autoimmune disease that affects primarily young women that leads to high morbidity and unacceptable mortality. In Canada, the prevalence of systemic lupus erythematosus (SLE) is 51 persons per 100,000 or 1 person in 2,000 Canadians, with a predominance of 9 women having lupus to 1 man.(7) It is believed that between 10-15 percent of people with lupus will die prematurely due to complications of lupus. Many factors come into play that may impede patients in becoming active partners in their care and proper management of lupus has been shown to improve health outcomes. Access to best treatments and timely information can also be instrumental for improved health outcomes. We will research how lupus patients can become active partners in their care and explore what obstacles impede these partnerships as well as what factors nurture these partnerships. The LIN research partnership consists of rheumatologists, psychologists, allied health professionals, consumers and industry partners working together to empower consumers and health care teams to work in partnership and improve health outcomes for people with Lupus. The focus groups will identify the gaps in care and obstacles for patients that prevent them from engaging as active partners with their health care team. The Lupus Interactive Navigator, which is a Lupus management tool for patients, rheumatologists, general practitioners and allied health professionals will be developed and used in practice for the management of Lupus. Those in remote and isolated regions of Canada will have access to best treatments and up to date information on Lupus. The act of engaging all stakeholders in identifying gaps in care will ultimately create a tool which is relevant for all who use it. The Lupus Interactive Navigator will empower patients to be active partners in their care and lead to improved health outcomes. Conclusion The Partnerships for Health System Improvement (PHSI) grant from the CIHR is an integrated KT program that supports a collaborative approach to applied health systems and services research that is useful to health system managers and/or policy makers. Through the active participation of consumers, rheumatologists, general practitioners, allied health professionals and industry, the Lupus Interactive Navigator (LIN) will be developed to create active consumer partnering with their health care team.   The following quote best illustrates the spirit of the contribution of the consumer in this partnership. From an epistemological (knowledge) standpoint consumer’s "experiential knowledge" of their disease and illness can be of value. Such knowledge can be seen to complement researcher’s perspectives: for example, there is a tendency in traditional health research to adopt a strictly scientific approach or to rely upon the biomedical model which tends to neglect psychosocial, cultural and spiritual dimensions of health and illness. Consumer engagement, however, has the potential to enhance the validity of the research by incorporating key insights and experiences that might be (and often are) otherwise overlooked. By extending perspectives beyond the medical and/or scientific mode, opportunities arise to understand the "lay" view of what it is like to live with illness and what it means to incorporate consumer priorities when setting the research agenda.(8) Objectives To identify gaps in care and obstacles faced by patients in creating partnerships with their health care team. To identify gaps in care and obstacles faced by rheumatologists, general practitioners and allied health professionals in creating partnerships with patients. Development of an online Lupus Interactive Navigator as a tool for the management of Lupus which addresses these gaps in care and obstacles in creating partnerships. Empower patients in becoming active partners with their health care team through the use of the Lupus Interactive Navigator. Methods • To identify gaps in care the research team will conduct focus group interviews with the following groups. • Patients living with Lupus • Rheumatologists • General Practitioners • Allied Health Professionals  • Once gaps and obstacles are identified we will proceed in the development of the Lupus Interactive Navigator (LIN) with Jack Digitals Productions, an industry partner and a company which has successfully developed the Oncology Navigator for patients with Cancer.   References Consumer Advisory Council /Canadian Arthritis Network, Toronto, On Université Laval, Québec, Qc McGill University, Montréal, Qc Jack Digitals Productions, Toronto, On McGill University, Montréal, Qc University Health Network, Toronto, On Bernatsky S, Joseph L, Pineau CA, Tamblyn R, Feldman DE, Clarke AE. A population-based assessment of systemic lupus erythematosus incidence and prevalence: results and implications of using administrative data for epidemiological studies. Rheumatology 2007; 46(12):1814-1818. Maeve Cooke, "Five Arguments for Deliberative Democracy" (2000) 48 Political Studies 947. Acknowledgements Thank-you to CAN and especially to Katy Miller for all her help with the poster. Contact Louise Bergeron louise383@sympatico.ca