Chronic disease self-management education programs Where should Victoria go

1. Good morning, my presentation focuses on viewing chronic disease self-management education programs in the broader policy and program context to assess where should Victoria proceed with these programs? This research was funded by a DHS Public Health Research grant. Funded by DHS Victoria as part of public health research grantGood morning, my presentation focuses on viewing chronic disease self-management education programs in the broader policy and program context to assess where should Victoria proceed with these programs? This research was funded by a DHS Public Health Research grant. Funded by DHS Victoria as part of public health research grant

2. Focus To determine the value of and potential for the integration of chronic disease self-management education programs into the care continuum International policy review Local (Australian centric) policy review Interviews with key stakeholders, GPs and consumers

3. Background Impact of chronic disease in Australia: >70% of disease burden Health system geared to acute conditions Deficiencies in patient care Lack of education & support for self-management Lack of ongoing and proactive care

4. Background Seeking alternative ways to improve treatment quality and patient satisfaction Policy shift: Medical didactic model ? Patient centred care Patient centred care has evolved against several influences including:Patient centred care has evolved against several influences including:

5. What is self-management? Consideration of: the individual with the chronic condition their family and carers health professionals Involves a holistic approach and acknowledging medical psycho-social cultural aspects Aims to empower individuals Through proactive and adaptive strategiesThrough proactive and adaptive strategies

6. Putting self-management into context Self-management is 1 component within chronic disease management Focus on formal self-management education programs to help assist patients to engage in self-care

7. Self-management education interventions Different types – one of the predominant is the group based Stanford course. However these have traditionally worked on the fringes of the health sector, largely community based and not operationalised in any structured way. So what has changed for self-management becoming a focus within the health sector?Different types – one of the predominant is the group based Stanford course. However these have traditionally worked on the fringes of the health sector, largely community based and not operationalised in any structured way. So what has changed for self-management becoming a focus within the health sector?

8. Policy focus: National Chronic Disease Strategy (NCDS) Self-management identified as one of four key action areas Self-care is important to manage chronic disease and supports need to be implemented at all levels of the health system Need for programs, initiatives to develop and enhance self-management

9. Program focus: Sharing Health Care Initiative Demonstration Projects $36.2 million initiative (2001-2004) Explored suitability of chronic condition self-management models within Australian setting

10. Policy focus cont… Australian Better Health Initiative (COAG) $500 million over 4 years for chronic disease prevention & management Focus on programs to actively encourage patients to self-manage their condition $14.8 million over 4 years to fund awareness & education self-management of arthritis and osteoporosis

11. The way forward?

12. Integration of CDSMP into the care continuum

13. International trends in CDSMP Focus on generic programs UK government leader in field “Expert Patients Programme” Anglicised version of Stanford CDSMP implemented throughout National Health Service £40 million spent since 2001 Canada, Germany, Sweden, Denmark less advanced re: policy and programs

14. Self-management policies Stand alone e.g. Expert Patients Programme (UK) Incorporated as part of a chronic disease management strategy generic e.g. British Columbia (Canada) disease specific e.g. USA Arthritis Action Plan Legislation e.g. Germany Disease Management Programs What’s the German approach? What’s the German approach?

15. International challenges with the integration of CDSMP Recruitment of consumers Engagement with health professionals Workforce sustainability Challenges with the integration of generic programs into the care continuum – focus on 2 of the key challenges that have emerged now., let’s deal with some of these issuesChallenges with the integration of generic programs into the care continuum – focus on 2 of the key challenges that have emerged now., let’s deal with some of these issues

16. Recruitment of consumers Recruitment and retention of a critical mass of individuals has posed challenges Social marketing time and resource intensive reach a small proportion of the target population *concern that some programs might increase health disparities EPP moving to Community Interest Company develop, market and deliver new and diverse s-m programs The key challenge with the integration of these programs is the recruitment and retention of a critical mass of individuals interested and able to participate in these programs. Social marketing strategies have chiefly been employed to market these programs in the health care system with little engagement with primary health care practitioners. Subsequent evaluations indicate that such strategies result in limited reach of the program – those who tend to participate are highly health literate with minimal interaction from traditionally hard to reach groups within the community. This has led to concern that some programs might increase health disparities.The key challenge with the integration of these programs is the recruitment and retention of a critical mass of individuals interested and able to participate in these programs. Social marketing strategies have chiefly been employed to market these programs in the health care system with little engagement with primary health care practitioners. Subsequent evaluations indicate that such strategies result in limited reach of the program – those who tend to participate are highly health literate with minimal interaction from traditionally hard to reach groups within the community. This has led to concern that some programs might increase health disparities.

17. Health professional engagement Health professionals crucial to the viability of programs Primary conduits for patients with chronic conditions to enter self-management programs Gatekeepers to the health system It is increasingly being recognised that engagement with health professionals, particularly GPs is crucial to the recruitment of this critical mass, given the role practitioners play as gatekeepers to the health system. But it also should be stressed that needs to be a balanced approach, the acute sector is also critically important in terms of recruitment of participants, particularly as chronically ill patients often engage with specialists in the early diagnosis or management of their condition. It is increasingly being recognised that engagement with health professionals, particularly GPs is crucial to the recruitment of this critical mass, given the role practitioners play as gatekeepers to the health system. But it also should be stressed that needs to be a balanced approach, the acute sector is also critically important in terms of recruitment of participants, particularly as chronically ill patients often engage with specialists in the early diagnosis or management of their condition.

18. Barriers to health professional engagement Wariness of new initiatives Lack of structured and uniform referral mechanism Uncertainty of benefits to patients Need for local evidence relating to patient outcomes and sustainability of programs

19. Workforce Sustainability Complexities with peer led programs Position of peer leaders and trainers in the health sector Administration/resources/support Peer leaders are patients resulted in workforce requiring high level of emotional and physical support from organisations and clashed with monitoring, implementation and managerial roles organisations were also expected to perform Peer leaders are patients resulted in workforce requiring high level of emotional and physical support from organisations and clashed with monitoring, implementation and managerial roles organisations were also expected to perform

20. Summary: Issues at the international level Integration of CDSMP into the health sector is in its infancy Recruitment and retention of a critical mass of individuals (patients and leaders) has posed challenges Programs only reach a small proportion of the target population Discuss with JJ What does this mean? 3. Is a bit rhetorical Discuss with JJ What does this mean? 3. Is a bit rhetorical

21. Engagement with health professionals Translation of community programs to the health sector Workforce issues Target ? 7 – ‘poses significant issues’ – not sure about this oneTarget ? 7 – ‘poses significant issues’ – not sure about this one

23. Australia Policy Initiatives Strong policy direction National Chronic Disease Strategy Sharing Health Care Initiative Demonstration Projects Australian Better Health Initiative

24. State policy overview

25. Comparison of State Policies Focused on states – mention NT & ACT NSW – Respiratory, cardiovascular and cancer VIC – HARP: focus on specific cohorts including COPD, diabetes, chronic heart failureFocused on states – mention NT & ACT NSW – Respiratory, cardiovascular and cancer VIC – HARP: focus on specific cohorts including COPD, diabetes, chronic heart failure

26. What is the extent of integration of CDSMP within Australia? Short term trials or demonstration projects e.g. Sharing Health Care Initiative

27. Sharing Health Care Initiative (SHCI) 1999 Enhanced Primary Care Package Shift from acute to primary care SHCI considered a range of generic CDSM models for integration into wider health care system 12 demonstration projects (8 focused on for SHCI evaluation) Where do sub-dot points 1 come from? Where do sub-dot points 1 come from?

28. Sharing Health Care Initiative (SHCI) Evaluation (DHA) A lot enthusiasm: contribution GP engagement limited Inability to capitalise on MBS / EPC items relating to chronic disease to assist with referral process Social marketing strategies predominant Engagement with GPs tended to only be successful where existing networks or relationships had already been established. Recognition that other health professionals, particularly practice nurses, allied health can make valuable contributions Engagement with GPs tended to only be successful where existing networks or relationships had already been established. Recognition that other health professionals, particularly practice nurses, allied health can make valuable contributions

29. SHCI Evaluation: Barriers & Enablers Barriers to patient participation dissemination of information transport ill health too busy/disinterested Successful strategies targeted specific groups and modified content/delivery to suit needs e.g. CALD Lack of transport – younger age group being too busy or disinterested 4 - Lack of transport – younger age group being too busy or disinterested 4 -

30. Integration themes – international & local Profile of self-management needs to be raised within health sector Engagement of health professional is essential Structured referral pathways and networks across the care continuum are required Programs need to be flexible in both content and delivery

31. To integrate or not to integrate? Self-management has the potential to make a profound contribution to health and wellbeing across the care continuum However it is currently unknown if programs are meeting the needs of consumers & health professionals in terms of: content, accessibility, and reach

32. Feedback at the grassroots level Consultation with Victorian GPs & Consumers Given this issue with the recruitment and retainment of a critical mass, we consulted GPs and consumers to gain insights into what are the enablers and barriers to engagement with self-management education programs with a focus on generic programs. This work was funded by the Department of Human Services in Victoria.Given this issue with the recruitment and retainment of a critical mass, we consulted GPs and consumers to gain insights into what are the enablers and barriers to engagement with self-management education programs with a focus on generic programs. This work was funded by the Department of Human Services in Victoria.

33. Qualitative study Methods Interviews : 17 GPs and 43 consumers Purposeful sampling employed Consumers : GPs, Rheumatologists and existing research database GPs recruited via 3 Div of General Practices (Northern, Dandenong & South Gippsland)

34. Common Barriers (GPs & Consumers) In terms of common barriers for both GPs and consumers, lack of awareness and knowledge about these programs was paramount. This is not surprising because these programs have traditionally worked on the fringes of the health care setting. However for any future integration, the profile of these programs need to be raised. This barrier was reinforced by comments from consumers that felt HP were in the best position to spread information about these programs and therefore lack of knowledge is a subsequent problem. A quite different barrier was the indication that health status of a consumer plays a significant role in whether they are happy to participate in self-management activities and often a generic group based program did not cater to the various needs of patients. This reinforced the need for a range of different types of programs to be made available.In terms of common barriers for both GPs and consumers, lack of awareness and knowledge about these programs was paramount. This is not surprising because these programs have traditionally worked on the fringes of the health care setting. However for any future integration, the profile of these programs need to be raised. This barrier was reinforced by comments from consumers that felt HP were in the best position to spread information about these programs and therefore lack of knowledge is a subsequent problem. A quite different barrier was the indication that health status of a consumer plays a significant role in whether they are happy to participate in self-management activities and often a generic group based program did not cater to the various needs of patients. This reinforced the need for a range of different types of programs to be made available.

35. Barriers (GPs) For GPs, For GPs,

36. Common Enablers (GPs & Consumers)

37. Enablers (GPs) With convenient and structured referral process also include assistance of practice nurses/allied health (which are already made provision for in MBS chronic care items)With convenient and structured referral process also include assistance of practice nurses/allied health (which are already made provision for in MBS chronic care items)

38. Enablers (GPs) With convenient and structured referral process also include assistance of practice nurses/allied health (which are already made provision for in MBS chronic care items)With convenient and structured referral process also include assistance of practice nurses/allied health (which are already made provision for in MBS chronic care items)

39. Enablers (Consumers) With convenient and structured referral process also include assistance of practice nurses/allied health (which are already made provision for in MBS chronic care items)With convenient and structured referral process also include assistance of practice nurses/allied health (which are already made provision for in MBS chronic care items)

40. What needs to be done to take self-management forward? - In Victoria- In Victoria

41. Framework – 4 elements

42. Policy integration Key actions

43. Health service delivery Key actions

44. Self-management interventions Key actions Between setting, not “from” Between setting, not “from”

45. Evaluation & Quality Assurance Health Education Impact Questionnaire (heiQ) Piloted as national quality and monitoring system across self-management programs in Australia Broad range of self-management education interventions Benchmark and provide national data on effectiveness of programs

47. Community Key actions What does this mean? Need to discuss each What does this mean? Need to discuss each

48. Framework – 4 elements

49. Policy Recommendations

50. Acknowledgements Joan Nankervis Bella Laidlaw Dr Caroline Brand (principal investigator) Dr Richard Osborne (principal investigator)

51. Thank you jjordan@unimelb.edu.au