The 9 th Global Forum of Bioethics Research 03 December 2008

1. Overview of SCIPPS: the process of inclusion of vulnerable populations Masoud Mirzaei, MD PhD On behalf of SCIPPS team The 9th Global Forum of Bioethics Research 03 December 2008

2. SCIPPS • The Serious and Continuing Illness Policy and Practice Study (SCIPPS) is a multi-staged study designed to develop and test policy and systems level interventions to improve outcomes for people with chronic illness in Australia. • Data to inform the development of interventions come from four main sources: qualitative research with patients, carers and health care providers; literature review; policy analysis and expert groups.

3. Setting: Sydney West Area Health Service & the Australian Capital Territory • Target population (purposively sampled): • Patients: 45-85 years (total=52 including 12 CALD and 7 ATSI) • Family carers (n=14 including 5 CALD) • Focus groups with 63 health professionals • Reference group discussions with service providers working in the area of Indigenous and CALD health.

4. AUSTRALIA Study Setting New South Wales SWAHS

5. Demography of CALD and Indigenous populations • 41% of SWAHS residents age 45 and over born overseas. • 1.5 % of SWAHS residents are Aboriginal or Torres Strait Islander reaching 14,674 in 2001. • 29.2% of Australia’s Indigenous population live in NSW.

6. SCIPPS

7. Recruitment process Indigenous population: - The CEO of the Aboriginal Medical Service was consulted at the design stage. - Ethics approval sought from AHMRC - Volunteers who were interested in participating in the study recruited by AMS staff - All interviews were conducted in the Mt Druitt AMS in a space that was familiar to the participants.

8. Recruitment process cont. • SWAHS Multicultural Health Network connected SCIPPS with multi-cultural health service providers. • The Australian Institute of Health and Welfare definition for CALD was used (i.e. born overseas in non English speaking countries). • Census data were used to identify the main CALD groups in the area.

10. CALD population in SWAHS aged 45 and over Source: ABS, Census 2006 Community Profiles for the LGAs of Blacktown, Blue Mountains, Hawkesbury, Penrith, Parramatta, Holroyd, Auburn, Baulkham Hills and Lithgow

11. CALD recruitment process • The SCIPPS team met various CALD groups in Community Centres. • Brief presentations were given about the aims of SCIPPS and its likely outcome for people with chronic illness (translator assisted). • SCIPPS team scheduled interview times for those who were interested. • People from some CALD communities refused to participate (e.g. Russian and Croatian). • Why didn’t they participate?

12. Summary • It was part of SCIPPS’ original proposal to include vulnerable population in the study in order to reflect their needs and wants to policy makers. • Vulnerable populations are those with poorer overall health outcomes who may have poorer access to care because of language and cultural differences. • SCIPPS used census data to identify vulnerable populations in SWAHS. • SCIPPS recruited the main vulnerable populations purposefully and interviewed them.