Pip Brennan, Executive Director, Health Consumers’ Council

1. Pip Brennan, Executive Director, Health Consumers’ Council A/Professor Michael Greco, Founder and CEO, PO

2. Key Points • We are about building relationships through a public, online feedback platform. • But we are not a TripAdvisor for health. • We are about supporting ‘change’ not so much about choice’. • And our focus is on ‘staff learning’ in addition to being a management tool • Our motto is about connecting people (staff/patients) for change • Our metrics are more relational – listening, responding, change • We want to see patients as more than ‘data sources’ but as ‘change-agents’

3. ‘Change-agents’ require a ‘person-centred’ feedback system Starts with seeing the feedback ‘donor’ not simply as a data source, but as someone who cares about how their feedback is used. It would encourage people to feed back about the issues that matter to them. It would enable people to see whether their feedback has been read, and by whom. It would allow a person giving feedback to communicate with those who are interpreting and acting on it. It would allow a person (and indeed everyone else) to see whether their feedback made a difference, and how. It would encourage everyone who can learn from and act on feedback to participate openly. Such learning can be internal (across all staff) and external (between health services).

4. What is Patient Opinion? • We are not-for-profit, both here and in other countries • Our mission is to make it safe and simple for people to ‘share their experience’ in a way that makes it easy for busy staff to connect with the authors of stories, and to learn from this type of feedback to help improve care.

5. Engaging on whose terms? Easy for services to use OUTPUTS OPAQUE TO THE PUBLIC OUTPUTS TRANSPARENT TO THE PUBLIC F & F Test Patient Opinion Care Opinion Surveys Focus Groups Hard for the public to use Formal Complaints Easy for the public to use Blogging Our Health Facebook YouTube Flickr Twitter LITIGATION Hard for services to use

6. Patient expectations of online feedback • Independent – of being skewed • Safe – stories are in ‘good hands’ • Responsive – opportunity for response • Anonymous – care won’t be affected • Public – more difficult to ignore • Constructive – it’s about service improvement • Accessible – easy to use

7. What makes Patient Opinion so different? • We aim to share stories with as many people as possible who can learn from it, and use it to make a difference. • What patients/carers should know is that: • they shouldn't have to tell their story more than once • their story should be shared across the local health economy • their story should be available to people improving healthcare, whether locally, regionally or nationally • their story should help future healthcare professionals too • Not only sharing stories, but seeing who has read them • The more widely a story is read, the more impact it can create, and the more learning and change can result.

8. Service User Patient Organisations Safety and Quality Orgs Primary Health Networks Automatic notification Service improvement Relevant staff Story Response Comment 1 Comment 2 Comment from patient Local Hospital Networks National and State governments, and MPs Conversations on Patient Opinion

9. Patient Feedback Response Framework Laura Sheard, Claire Marsh and colleagues at Bradford Institute of Health Research, based on observing 17 ward-based staff teams

10. So what? The authors concluded that: “Until ward staff are given robust organisational support to implement changes then the value of hospitals collecting patient feedback is questionable."

11. Example conversations leading to change • Patient Advocacy that led to a change: https://www.patientopinion.org.au/opinions/62034 This story from Kimberley Health led to changes being planned to the appointment system. A series of responses from two organisational roles.

17. Story swarm – WACHS Progress

18. Story swarm – WACHS Criticality

19. 9-stages of organisational culture to public online feedback Resistance/defensiveness Controlling/organisation-centric Acceptance Engagement Initial commitment Widening staff involvement as recipients Widening staff involvement as active participants Everyday Patient Opinion Absence of fear

20. “At times it also helps to actually reduce complaints. We can get in touch with a user straight away and we can avoid a lengthy complaint response.” Dr Arne Rose, consultant in emergency medicine “We're now seeing it starting to catch on… there's some ward areas who are now taking this on. They want to take over and respond to their own postings.” Dr Arne Rose, consultant in emergency medicine

21. What are patients saying about sharing their stories on PO? • 42 authors out of 250 found the response to their story helpful • 7 authors found the response unhelpful • Surveyed 100 patients across our platform – 37% response rate • Where did they hear about PO? • Health service 41% • Family and friends 14% • Media 11% • Other 35% (colleagues, health professional, twitter, consumer org) • Did they find it easy writing their story? • Extremely and very easy 74% • Moderately easy 15% • Not so easy 9% • Not at all easy 2%

22. What are patients saying about sharing their stories on PO? • If you received a response, was it helpful? • Yes 50% • No 20% • Did not get a response 30% • Do you think the organisation appreciated your story? • Yes 50% • No 17% • Don’t know 33%

23. What are patients saying about sharing their stories on PO? • Do you think your story will make a difference to you and/or other people using the service? • Yes 23% • No 20% • Don’t know 57% • Would you write another story on PO? • Yes 70% • No 2% • Maybe 28%

24. WA: 250 stories with 100,000 views • Who are writing the stories? • 60% patients • 20% parents and guardians • 9% relatives • 4% carer • 2% volunteer • 2% staff posting on behalf of patient • 1% service user • 1% friend • 1% staff

25. WA: Criticality ratings • 6% - high criticality (4s and 5s) • 9% - moderate criticality (3s) • 13% - mild criticality (2s) • 21% - minimally criticality (1s) • 51% - positive or neutral (0s)

26. WA: staff email alerts • East Metro – 34 + 9 Board • CAHS - 79 • Goldfields – 24 • Great Southern – 14 • Kimberley – 59 • Midwest – 8 • Pilbara – 17 • South West – 71 • Wheatbelt - 40

27. How quickly are patient stories being responded to? Of the first responses posted to these 180 stories with responses:

28. Who is responding from the health services? • East Metro (5) – CEO and Executive Directors • CAHS (5) – CEO, Executive Directors and Chair (Consumer Adv Council) • Goldfields (1) – Regional director • Great Southern (2) – Regional director and PO coordinator • Kimberley (11) – Clinical staff including Regional medical director, regional director of nursing, senior medical officer and consultant psychiatrist, Operations managers, PO coordinator • Midwest (3) – Project officer, Program support officer and Coordinator Exec services • Pilbara (1) – Patient safety team • South West (2) – Regional director and Manager • Wheatbelt (2) – Regional director and Clin Gov support officer

29. What improvements have been undertaken?

30. What improvements have been undertaken? 21 improvements from 250 stories • Recruitment of clinician to help with wait times • Recruitment of clinician to help with access (antenatal care) • Strategy for removing cigarette butts at front of hospital • Implementing a strategy for effective surgical discharge summaries • Improving information for visiting surgeons to reduce waiting in the unit prior to surgery • Better information about availability of private rooms • Privacy issue – clear glass replaced by opaque glass • Noise issue – fixed automatic door hinge to stop banging • Better phone access • Pregnancy hand held records given to the patient • Antenatal care documented guideline

31. Group Discussion: Question 1 What are the ways your health organisation collects patient feedback, and how does it ensure that patients/carers have been involved in these methods of data capture?

32. Group Discussion: Question 2 How has your health organisation worked with patients/carers to ensure that their feedback improves the quality of care? What are your challenges here?

33. Group Discussion: Question 3 What would help your health organisation from a whole system perspective to successfully capture feedback and make the best use of this information?

34. Key points • We seem to be collecting a lot of data on patient experience (focus more on metrics) with little evidence of change • Many of our feedback systems are one-way (it’s about what the system wants) rather than two-way where consumers ‘feel heard’ and can see the outcome of their feedback • If you are collecting patient feedback and not sharing it with all staff, then you will struggle to change culture. • Feedback should be more about staff learning rather than driving consumer choice (different from TripAdvisor approach)

35. Key point Empowering our patients does not mean that we disempower our staff