The goal of the Saskatchewan Bleeding Disorders Program (SBDP) is to improve the health of patients living with Bleeding disorders in the province of Saskatchewan. The program is designed based on several principles of care including patient safety, access, and quality of care. The SBDP has focused on developing a sustainable model for including patients and families in program design and quality improvement initiatives.

The provincial program funding began in October 2001; SBDP’s program descriptions and goals were developed at our first Planning Day on November 30, 2001. We included two staff/representatives from Hemophilia Saskatchewan (the provincial chapter of the national CHS advocacy group) and two consumers- one adult urban patient and one pediatric (mother) rural patient. This Planning Day also included medical staff and transfusion medicine staff from Regina and Saskatoon, and the Blood Bank staff. A veteran Hemophilia nurse from Winnipeg also attended. During the second Planning Day, four specific committees were set up; “Service Co-ordination”, “Education”, “Therapeutic Intervention” and “Blood Products”. Each committee included the patient voice. Over time, the first three committees amalgamated into the present day SET committee (Service Co-ordination, Education, Therapeutic Intervention). The focus remains on supporting multidisciplinary care, planning and education, with guidance and input from consumers.

In 2007, our program came under the Saskatoon Health Region umbrella of Chronic Disease Management (CDM), since it fit well with the CDM model of self-management (Wagner’s model) and was aligned with the Saskatoon Health Region’s (SHR) Client Centered Care model. We are now a provincial service that operates out of one site. The service also travels to provide clinics in Regina with plans to expand to Prince Albert. The intent is to shorten the distance a consumer needs to travel to attend clinic follow ups. As well the team communicates with other emergency and family physician providers throughout the province (Humboldt, Yorkton, and Prince Albert); with an emphasis on teaching and supporting home treatment (97% of treatment is now at home). Annual Planning Days have evolved to be half educational and half planning. Each year there is a theme, based on new research or care developments. Consumers/patients are involved as well as the whole multidisciplinary team, and service providers from any involved departments or services.

Over the last 4 years patient involvement has increased with the inclusion of patient representative panels, of 6-8 patients, to make sure we hear and are guided by their stories. Patients are more comfortable to speak out, if their experiences are solicited and if there are a greater number of them present. They are provided with questions in advance, and compensated with an honorarium for their time/expenses to travel. Recent Planning Day themes include: Women and Bleeding Disorders, Transitions, Mild Hemophilia, Pediatric Care (urban and rural), and Access to Care. The outcome of each planning day is the creation of actionable items that “joint teams of staff and consumers” work on through the year and report back at the next year’s Planning Day.

Some examples of team projects include: improvements to Factor First cards; transportation support/funding in conjunction with HSK; extended hours nursing coverage on evenings, weekends and holidays ; a follow up guide, a specific Women with Bleeding Disorders clinic with a Hematologist and an obstetrician and gynecologist.

For the past 12 years the service provided by the Saskatchewan Bleeding Disorders Program has been developed and shaped by the joint project work involving consumers and staff. This has affected all aspects of program care and delivery.

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