Are Consumer Held Routine Outcome Measures the Next Step?

1. Are Consumer Held Routine Outcome Measures the Next Step? Dr Roderick McKay June 2013 Psychiatry

2. Disclaimer Material presented does not represent the views of the National Mental Health Information Development Expert Advisory Group, or any other organisation ……….but informed by the shared experience and expertise of many

3. Why Routine Outcome Measurement? Goals may include: To improve care Through improving services and policy Through improving direct care

4. Key components of routine outcome measurement in Australian specialist mental health services ADMISSION REVIEW DISCHARGE Outcome measure(s) Outcome measure(s) Outcome measure(s) Broader information systems ( e . g . , decision support tools ) . . , Other data about the consumer and their care . Data linkage (Adapted from McKay, Coombs and Pirkis 2012)

5. Why routine outcome measures?

6. Building evidence of impact on outcomes of ROM if feedback is provided Carina Knaup, Markus Koesters, Dorothea Schoefer, Thomas Becker and Bernd Puschner Effect of feedback of treatment outcome in specialist mental healthcare: meta-analysis. The British Journal of Psychiatry2009 195: 15-22 Feedback requires familiarity with the measures, or their interpretation By both sharing the information

7. Two of the measures used in Australia Health of the Nation Outcome Scales Collection of 12 clinician rated scales Covers common problems in symptoms and function found in consumers of mental health services 0 to 4 rating against glossary on each scale Score of 2 or above clinically significant (Burgess et al 2009) Possible Total scores 0-48

8. The HoNOS scales 1. Overactivity, aggression 2. Non-accidental self-injury 3. Problem drinking or drug-taking 4. Cognitive problems 5. Physical illness or disability problems 6. Problems associated with hallucinations or delusions 7. Problems with depressed mood 8. Other mental and behavioural problem 9. Problems with relationships 10. Problems with activities of daily living 11. Problems with living conditions 12. Problems with occupation and activities

9. HoNOS glossary extract (from www.amhocn.org)

10. Kessler 10 Consumer rated measure 10 items focussed on psychological distress Possible scores 10 to 50 rated over 4 weeks or 3 days (from www.amhocn.org)

11. A good starting place to improving care In clinical care is to consider how the measures assist with the questions Have we adequately assessed the consumer? Has anything changed? Is there agreement between the consumer and clinician?

12. Using pattern recognition to move beyond…. Consumer A and consumer B both score 21 on the HoNOS What does that mean? They may have similar overall impairment, but for very different reasons The scales provide further information That can be used with clinically informed interpretation

13. Is there an adequate assessment? (McKay and Coombs 2012) Application depends on applying to the right questions at the right time

14. Has anything changed? Selectively focus on parts of the HoNOS can assist a longitudinal view of a person presenting at a point in time

15. Is there agreement? Discussion of HoNOS scales at a point in time, or total score compared with Kessler 10 (McKay and Coombs 2012)

16. Why consumer held routine outcome measures?

17. Personal trial

18. Key issues in ROM in Australia Varied familiarity with measures, esp by senior clinicians Concerns re inconsistent focus upon rating accuracy by clinicians Limited engagement with consumers/carers around clinician rated measures Limited offering of consumer rated measures Only covers contact of people with public clinical specialised services

19. Why consumer held ROM? Encourage more consistent rating by clinicians Consistent with recovery orientation Overcome data linkage issues for individual consumers using different services Open alternate options for data linkage to answer questions that cannot be answered currently Force some critical thinking regarding What everyone should be familiar with What are critical factors to ‘report’

20. Mental health care is becoming more complex There are increasing numbers of providers of mental health care Specialised clinical mental health service (NGO operated) Specialised mental health service GP Private psychiatrist Many consumers have more than one provider of mental health care …..and may want to monitor their own mental health outcomes (including with their carer or parent) ...and many people with mental illness do not seek assistance

21. Communicating between sectors, and over time Service A Service B Service C Consumer

22. Key reasons for consumer held outcome measures • Need to be told by all consumers, potential consumers, their carers, and those professionals who support them • May be • So I can understand • my mental health better • What mental health professionals think of my mental health • what influences my mental health • So I can communicate about • How I feel about my mental health • How my perspectives are similar and different to your perspectives • My goals in relationship to my mental health and life • So you can partner with me in regaining the ability to achieve my goals • Not tell me how to ‘get better’

23. Key components of consumer held routine outcome measurement FIRST MEASURE REVIEW REVIEW Outcome measure(s) Outcome measure(s) Outcome measure(s) Web based information to assist interpretation and use . . , Other data and knowledge about the consumer and their care and experiences (on record or in memories) . Data linkage (consumer opt in either/ both ways) Service held routine outcome measurement systems National interpretation

24. And we have no accepted mental health ‘Pulse, BP,ECG’ • What isn’t measured and understood across those who deliver and receive healthcare isn’t accepted as important • Pulse: • current psychological distress • BP: • is that distress appropriate or over a crucial level, persistent or unusual • ECG • What does expert evaluation show? (need to be understand the report, even if cannot read the test itself or understand how it works)

25. Maybe we aren’t so far from a psychological ‘pulse’ ....if we communicate • Psychological distress • Kessler 10 used in Australia • Within some state mental health services • By GPs to assist access to services • By some psychologists • For web based ‘self checks’, and some web based mental health services • In studies of population health • But no agreement across users about how to communicate consistently about what it means • How should you respond if you are told someone’s pulse is 100? • How should you respond if you are told someone’s K10 is 30? • How should you respond if you are told someone’s pulse is 60 • .....and temperature 40? • How should you respond if you are told someone’s K10 is 10 • .....and have command hallucinations to harm someone?

26. Mental health BP • Could be the consistent plotting of psychological distress over time Event 1

27. Then it becomes more complex • ECG, ECHO, Stress Test? • Different people with mental illnesses need • different services, • focussed on different aspects of a person health and function

28. Shared understanding by whom? From McKay, Coombs & Pirkis 2012

29. Then it becomes more complexAspects of Function ICF: From WHO 2002

30. Aspects of Function Emotional and cognitive function, physical health Activity capacities and behaviour Social inclusion, occupational and vocational inclusion Accommodation, Service access and experience Recovery, Quality of Life,

31. Which may vary by user eg What does a NUM, psychiatrist or service manager need to know about the function of consumers on the ward? ‘everything’ One or two aspects of function? Relating to risk? Relating to ???? And how does this relate to what a consumer wants to know?

32. Personal trial

33. Need simple presentations that everyone can understand

34. Need simple presentations that everyone can understand

35. Need simple presentations that everyone can understand

36. Communicating between sectors, and over time Service A Service B BP, Pulse and ?? Service C Consumer

37. Key reasons for consumer held outcome measures • Need to be told by all consumers, potential consumers, their carers, and those professionals who support them • May be • So I can understand • my mental health better • What mental health professionals think of my mental health • what influences my mental health • So I can communicate about • How I feel about my mental health • How my perspectives are similar and different to your perspectives • My goals in relationship to my mental health and life • So you can partner with me in regaining the ability to achieve my goals • Not tell me how to ‘get better’

38. Conclusions There are many obstacles to implementing consumer held outcome measures Privacy, technology, consensus Mental Health needs to move to consumer held outcome measurement because it should improve routine outcome measurement within specialised mental health services assist the change in power balance within services required for recovery to be a reality give consumers more of the information they need to maximise their opportunity to recover help to move mental illness from being ‘some one else’s business’ (that I don’t understand, and hope I never have to)

39. Thank you References McKay T, Coombs T &Pirkis J. 2012 A framework for exploring the potential of routine outcome measurement to improve mental health care Australasian Psychiatry 20:127-133 McKay R & Coombs 2012 T. An exploration of the ability of routine outcome measurement to represent clinically meaningful information regarding individual consumers Australasian psychiatry 20:433-437 World Health Organisation2002 Towards a Common Language for Functioning, Disability and Health ICF