Serious and Continuing Illnesses Policy and Practice Study (SCIPPS)

About

The Menzies Centre for Health Policy was awarded a $3.5 million National Health and Medical Research Council grant in 2006 to research cardiovascular disease, diabetes and chronic obstructive pulmonary disease. The Serious and Continuing Illnesses Policy and Practice Study (SCIPPS) examined the experiences of older Australians to find out what problems they really face in managing their health, and what might be done to help using policy and systems interventions.

Health professionals and people affected by chronic conditions as patients and carers - and many people are both - took part. Indigenous people and people from diverse cultural and language backgrounds were included in the study. An in depth study of a collaboration to improve chronic condition outcomes was conducted in Western Sydney. We carried out two national surveys of older Australians to establish the economic and other costs of chronic conditions, and the time spent on health care with a chronic condition, as well as how well care coordination works on the ground.

The main findings of the research program show that:

  • People are affected by the costs of health care and medicines to the point where many avoid filling prescriptions or attending services; we estimate that around 250,000 older Australians are spending more than 20% of their available income on meeting out of pocket health care costs;
  • Carers need help so they can help their family members who need them: they need help understanding what to do, when to do it, and where to find more formal help; of all older people caring for a person with a chronic condition, most have a chronic condition themselves;
  • Indigenous people with chronic conditions find great support in their families and culture and the holistic support they receive in aboriginal medical service, which contrasts with their continued perception of racism in mainstream services;
  • People with multiple chronic conditions find that the lack of communication and connection between people who are responsible for their care causes problems, delays, and unnecessary time spent on getting care;
  • Most people spend less than an hour a day looking after their health, but the top 10% spends about 2 hours a day- every day; and carers with a chronic condition themselves are spending up to four times that amount;
  • The unique element in highly diverse patterns of illness and health services use is the patient experience, and to ensure that the best use of resources and best outcomes are possible, this needs to be reflected in new policies and practices.

SCIPPS set up discussions with policy makers, practitioners, consumer groups and researchers to look at three areas of findings that were complex, and difficult to address from a policy and systems perspective; the complexities associated with multiple morbidity; the economic impact of chronic illness; and health literacy of individuals and their communities. From these workshops, further dialogue with a range of stakeholders, consumers, researchers, public and private providers and policy makers identified potentially useful approaches to address issues brought up as part of the research, which are in the attached report.

The value of the SCIPPS project is its foundation in user experience and the developing dialogue with a range of groups and people with both interest and expertise in an area that is both complex and increasingly costly.

Findings

Snapshots

Awards & Recognition

The Serious and Continuing Illness Policy and Practice Study (Western Sydney Local Health District, Mount Druitt Aboriginal Medical Service Wununga, Nimmityjah Aboriginal Medical Service, ACT) won the "Closing the Gap in Aboriginal Health Through Excellence in Research, Evaluation and Building Evidence Award" at NSW Health's 2012 Aboriginal Health Awards.

As part of their commitment to closing the gap on Indigenous disadvantage, the research team conducted a sub-study in which they recruited 19 Aboriginal and Torres Strait Islander people with at least one of the chronic illnesses of interest. The project was conducted in a manner that was culturally responsive and holistic in partnership with two Aboriginal Medical Services – Mount Druitt (NSW) and Winnunga Nimmityjah (ACT). Staff at both services played a vital role in the project which seeks solutions to the increasing burden placed on Aboriginal and Torres Strait Islander people affected by chronic illness.

Publications

Financial Pressure and Economic Hardship

  1. McRae I, Yen L, Jeon YH, Herath PM, Essue B. The Health of Senior Australians and the Out of pocket costs they face. National Seniors Australia Productive Ageing Centre, November 2012. The survey discussed in this report was funded by Menzies Centre for Health Policy as part of the Serious and Continuing Illness Policy and Practice Study, and was managed by staff at the Australian Primary Health Care Research Institute.
  2. McRae I, Yen L, Jeon YH, Herath PM, Essue B. Multimorbidity is associated with higher out-of-pocket spending: a study of older Australians with multiple chronic conditions. Aust J Prim Health. 2012 May 24. doi: 10.1071/PY12035. [Epub ahead of print]
  3. Jan S, Essue BM, Leeder SR. Falling through the cracks: the hidden economic burden of chronic illness and disability on Australian households. Med J Aust. 2012 Jan 16;196(1):29-31.
  4. Essue B, Kelly P, Roberts M, Leeder S, Jan S. We can't afford my chronic illness! The out-of-pocket burden associated with managing chronic obstructive pulmonary disease in western Sydney, Australia. J Health Serv Res Policy. 2011 Oct;16(4):226-31. doi: 10.1258/jhsrp.2011.010159. Epub 2011 Sep 27.
  5. Yen L, Gillespie J, Rn YH, Kljakovic M, Anne Brien J, Jan S, Lehnbom E, Pearce-Brown C, Usherwood T. Health professionals, patients and chronic illness policy: a qualitative study. Health Expect. 2011 Mar;14(1):10-20. doi: 10.1111/j.1369-7625.2010.00604.x.
  6. Jeon YH, Essue B, Jan S, Wells R, Whitworth JA. Economic hardship associated with managing chronic illness: a qualitative inquiry. BMC Health Serv Res. 2009 Oct 9;9:182. doi: 10.1186/1472-6963-9-182.

Indigenous Health

  1. Aspin C, Brown N, Jowsey T, Yen L, Leeder S. Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study. BMC Health Serv Res. 2012 Jun 8;12:143. doi: 10.1186/1472-6963-12-143.
  2. Jowsey, T., Yen, L., Ward, N., McNab, J., Aspin, S., Usherwood, T. (2012), It hinges on the door: time, spaces and identity in Australian Aboriginal Health Services. Health Sociology Review. 21(2), 196 - 207.
  3. Ward NJ, Jowsey T, Haora PJ, Aspin C, Yen LE. With good intentions: complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study. BMC Public Health. 2011 Sep 4;11:686. doi: 10.1186/1471-2458-11-686.
  4. Jowsey,T., Yen, L., Aspin, C., Ward, N.J & the SCIPPS Team. “People I can call on”: Aboriginal and Torres Strait Islander experiences of chronic illness. Community Report. Serious and Continuing Illness Policy and Practice Study, Menzies Centre for Health Policy 2011: Canberra.

Chronic Illness: Health literacy, time usage and self management

  1. Jowsey T, McRae I, Gillespie J, Banfield M, Yen L. Time to care? Health of informal older carers and time spent on health related activities: an Australian survey.BMC Public Health. 2013 Apr 22;13(1):374. [Epub ahead of print]
  2. Yen L, Jowsey T, McRae I. Consultations with complementary and alternative medicine practitioners by older Australians: results from a national survey, BMC Complementary and Alternative Medicine 2013, 13:73
  3. Jowsey T, McRae IS, Valderas JM, Dugdale P, Phillips R, Bunton R, Gillespie J, Banfield M, Jones L, Kljakovic M, Yen L. Time's Up. Descriptive Epidemiology of Multi-Morbidity and Time Spent on Health Related Activity by Older Australians: A Time Use Survey. PLoS One. 2013;8(4):e59379. doi: 10.1371/journal.pone.0059379. Epub 2013 Apr 1.
  4. Yen L, McRae IS, Jowsey T, Gillespie J, Dugdale P, Banfield M, Mathews P, Kljakovic M. Health work by older people with chronic illness: how much time does it take? Chronic Illn. 2013 Mar 5. [Epub ahead of print]
  5. McNab, J., Report of the Evaluation of HealthOne Mount Druitt, Menzies Centre for Health Policy, University of Sydney, February 2013.
  6. Corcoran KJ, Jowsey T, Leeder SR. One size does not fit all: the different experiences of those with chronic heart failure, type 2 diabetes and chronic obstructive pulmonary disease. Aust Health Rev. 2013 Feb;37(1):19-25. doi: 10.1071/AH11092.
  7. Jowsey T, Yen L, W PM. Time spent on health related activities associated with chronic illness: a scoping literature review. BMC Public Health. 2012 Dec 3;12:1044. doi: 10.1186/1471-2458-12-1044.
  8. Corcoran, K; McNab, J; Girgis, S; Colagiuri, R. Is transport a barrier to healthcare for older people with chronic diseases? Asia Pacific Journal of Health Management, Volume 7 Issue 1 (Jun 2012).
  9. Serious and Continuing Illnesses Policy and Practice Study, International Innovation, May 2012.
  10. National Seniors Productive Ageing Centre. Improving Health Literacy in Seniors with Chronic Illness, April 2012. The authors of the study on which this report is based are James Gillespie and Justin McNab from the Menzies Centre for Health Policy at the University of Sydney.
  11. Jeon Yun-Hee, Black Annie, Govett Janelle, Yen Laurann, McRae Ian (2012) Private health insurance and quality of life: perspectives of older Australians with multiple chronic conditions. Australian Journal of Primary Health 18, 212–219.
  12. Jowsey T, Pearce-Brown C, Douglas KA, Yen L. What motivates Australian health service users with chronic illness to engage in self-management behaviour? Health Expect. 2011 Nov 10. doi: 10.1111/j.1369-7625.2011.00744.x. [Epub ahead of print]
  13. Yen L, McRae I, Jeon YH, Essue B, Herath P. The impact of chronic illness on workforce participation and the need for assistance with household tasks and personal care by older Australians. Health Soc Care Community. 2011 Sep;19(5):485-94. doi: 10.1111/j.1365-2524.2011.00994.x. Epub 2011 Apr 1.
  14. Jowsey T, Gillespie J, Aspin C. Effective communication is crucial to self-management: the experiences of immigrants to Australia living with diabetes. Chronic Illn. 2011 Mar;7(1):6-19. doi: 10.1177/1742395310387835. Epub 2010 Nov 15.
  15. Jowsey T, Yen L, Wells R, Leeder S. National Health and Hospital Reform Commission final report and patient-centred suggestions for reform. Aust J Prim Health. 2011;17(2):162-8. doi: 10.1071/PY10033.
  16. Essue BM, Jowsey T, Jeon YH, Mirzaei M, Pearce-Brown CL, Aspin C, Usherwood TP. Informal care and the self-management partnership: implications for Australian health policy and practice. Aust Health Rev. 2010 Nov;34(4):414-22. doi: 10.1071/AH09795.
  17. Aspin C, Jowsey T, Glasgow N, Dugdale P, Nolte E, O'Hallahan J, Leeder S. Health policy responses to rising rates of multi-morbid chronic illness in Australia and New Zealand. Aust N Z J Public Health. 2010 Aug;34(4):386-93. doi: 10.1111/j.1753-6405.2010.00571.x.
  18. Jeon YH, Kraus SG, Jowsey T, Glasgow NJ. The experience of living with chronic heart failure: a narrative review of qualitative studies. BMC Health Serv Res. 2010 Mar 24;10:77. doi: 10.1186/1472-6963-10-77.
  19. Jeon YH, Jowsey T, Yen L, Glasgow NJ, Essue B, Kljakovic M, Pearce-Brown C, Mirzaei M, Usherwood T, Jan S, Kraus SG, Aspin C. Achieving a balanced life in the face of chronic illness. Aust J Prim Health. 2010;16(1):66-74.
  20. Jowsey T, Jeon YH, Dugdale P, Glasgow NJ, Kljakovic M, Usherwood T. Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study. Aust New Zealand Health Policy. 2009 Sep 8;6:22. doi: 10.1186/1743-8462-6-22.
  21. Glasgow NJ, Jeon YH, Kraus SG, Pearce-Brown CL. Chronic disease self-management support: the way forward for Australia. Med J Aust. 2008 Nov 17;189(10 Suppl):S14-6.
  22. James A. Gillespie, Laurann Yen, Yun Hee Jeon and Robert Wells. The Diffusion of Health Service Innovations to Manage Chronic Illness: Comparing Two Australian Urban Regions, Accepted Full Papers, Population Health Congress 2008 A GLOBAL WORLD – Practical Action for Health and Well-being, Brisbane, Australia, July 2008.
  23. Laurann E Yen Robert W Wells James A Gillespie Stephen R Leeder.The search for better financing of health care, including that for people with chronic illness Med J Aust 2007; 186 (9): 438-439.
  24. Essue B, Mirzaei M, Leeder SR, Colagiuri R. Epidemiology of diabetes. The Serious and Continuing Illness Policy and Practice Study (SCIPPS), The Menzies Centre for Health Policy, 2007.
  25. Mirzaei M, Yen L, Leeder SR. Epidemiology of chronic heart failure.The Serious and Continuing Illness Policy and Practice Study (SCIPPS), The Menzies Centre for Health Policy, 2007.
  26. Essue B, Yen L, Usherwood T, Leeder SR. Epidemiology of chronic obstructive pulmonary disease. The Serious and Continuing Illness Policy and Practice Study (SCIPPS), The Menzies Centre for Health Policy, 2007.
  27. Gourlay, K., Jowsey, T. and the SCIPPS team. Practice Nursing Development: Implications and Opportunities in the Management of Continuing Illness,The Serious and Continuing Illness Policy and Practice Study (SCIPPS), The Menzies Centre for Health Policy, 2007. URL: (access date: 30.10.2007).