The Serious and Continuing Illness Policy and Practice Study (SCIPPS) is an NHMRC funded program conducted at The Australian National University and University of Sydney and administered by The Menzies Centre for Health Policy Serious and Continuing Illness Policy and Practice Study (SCIPPS) The 9 th Global Forum of Bioethics Research 03 December 2008 Masoud Mirzaei, MD PhD On behalf of SCIPPS team Overview of SCIPPS: the process of inclusion of vulnerable populations

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.

Setting: Sydney West Area Health Service & the Australian Capital Territory Target population (purposively sampled): –Patients: 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.

AUSTRALIA SWAHS New South Wales Study Setting

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 % of Australia’s Indigenous population live in NSW. Demography of CALD and Indigenous populations

SCIPPS

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.

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.

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

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?

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. Summary