Understanding patient, staff and family experience And transforming care through design

1. Understanding patient, staff and family experience And transforming care through design HQSC, Partners in Care, Show & Tell Symposium, June 2014 Lynne Maher and Hilary Boyd

2. Plan for today At the end of the workshop participants will: • Understand how to work closely with patients and staff to co-design health services • Be introduced to a range of tools and methods to support co-design in practice • Recognise the value patients bring to improving quality, safety and experience of care • Know where to go to find out more information

3. i. About co-design

4. The co-design approach is... • …about using experience to gain insights from which you can identify opportunities for improvement • …about experiences not attitudes or opinions

5. Experience Based Design is about designing better experiences

6. Healthservice Co-Design: framework www.healthcodesign.org.nz/about.html

7. Health Service Co-design phases 01 Engage: Establish and maintain meaningful relationships. 02 Plan: Work with patients and staff to establish project goals and how to achieve them. 03 Explore: Capture and understand patient experiences of services and identify ideas for change. 04 Develop: Work with patients to turn ideas into possible improvements. 05 Decide: Decide which improvements to make and how to make them. 06 Change: Implement the changes. www.healthcodesign.org.nz/about.html

8. Terminology • Feeling informed and being given options • Patient experience • Patient engagement • Patient involvement? • Patient satisfaction? • Patient- and family-centred care? • PFCC? • Person-centred care? • Co-design?

9. But why? “We need to move from a service that does things to and for its patients to one where the service works with patients and whaanau to supports them with their health needs.”

10. When you start to work closely with patients to understand their needs and support them to achieve their health goals you cannot go back to your old way of working.

11. “Stories from patients are inspiring, insightful, humbling, uplifting, reassuring and above all remind us of why we are here.” [Liz Goldie, Partners in Care Programme, 2014]

12. “Those that believe patient experience is simply about making people happy have simply missed the point.” [James Merlino, Chief Experience Officer, Cleveland Clinic]

13. Positive patient experience is associated with higher quality care Hospitals with high levels of ‘patient care experience’ reported by patients provide clinical care that is higher in quality across a range of conditions. [Jha A et al (2008) N Engl J Med 2008; 359:1921-1931]

14. Improved patient experience is positively associated with… • Objectively measured health outcomes • Adherence to medications and treatments • Health resource usage • Technical quality of care & adverse events [Doyle C et al BMJ Open Jan 20, 2013]

15. We need to move away from this...

16. Weas clinicians and managers worry about this...

17. We think patients want this...

18. What Matters to Patients (England, 2011) • Feeling informed and being given options • Staff who listen and spend time with me/patients • Being treated as a person, not a number • Being involved in care and being able to ask questions • The value of support services, for example patient and carer support groups • Efficient processes [Robert, Cornwall, Brearley et al., 2011]

19. A quick survey What did you think of your journey this morning? A B C D E Very Poor Very Good

20. A QUICK SURVEY • Work in two’s or ‘threes’ • One person tell their story of their journey here today- take 5 minutes • The ‘listeners’ do just that; and particularly ‘tune in’ to any words that could depict emotion.

21. FEEDBACK - TABLES Discuss what was the difference between doing a survey and telling your story.

22. Understanding the needs of people living with Multiple Sclerosis

23. Conversations that count • How can we encourage conversations about planning for death and dying amongst and in communities so that people can get the care they want at the end of their lives? • [Auckland District Health Board]

24. What we did • Held several consumer workshops to understand their experiences of advance care planning and find out what they would like done differently. • Received HQSC funding to implement the peer-education idea. • Recruited consumer representatives. • Held four practical co-design workshops to understand how to structure a peer education programme and how the resources would look. • Produced a 52-page modular-based toolkit and a 2-day training package. • Trained 27 volunteers who held 19 community sessions with 172 people.

25. “I found our sessions very enlightening! I was amazed at the many topics we discussed, they truly opened my eyes as to what is available to people facing end-of-life. Not knowing what is available can lead to fear and isolation. It would be wonderful to get this information out to the community so people could make decisions for themselves, how to best look after themselves and face this phase of their life positively without fear.” [Community session participant]

26. II. Co-design in practice

27. If I had an hour to save the world, I would spend 59 minutes defining the problem and one minute finding solutions.”[Albert Einstein]

28. How can you do this? • As a regular way to understand patient and staff experiences • In an area where you have challenges- perhaps where you know you have a number of complaints • As part of an improvement project • All of the time • Looking at services, product design, the technology design, facility design and tackling big issues

29. Public Spaces Project How can we understand people’s experience of public spaces at Auckland City Hospital? • How staff, patients and visitors use the space • What people use the space for…existing entry points, foyers and retail spaces • How people access care, services and information • What kinds of services we provide • How the entry points, foyers and public spaces work and the qualities they portray [Auckland District Health Board]

30. Public Spaces Discovery Week • A week of discovering what people thought • Developed three new tools for intercept interviews: journey, services and qualities • Over one weekend and three weekdays had teams doing interviews • Two co-design workshops: staff and community • Online staff survey • Daily debriefing sessions to compile results [Auckland District Health Board]

31. How can working with Very High Intensity Users help us solve the readmission problem? Agnes became unwell and went to the ER. She was admitted to hospital and responded well to treatment. Agnes was discharged home with medications and information. Agnes became unwell and went to the ER. She was admitted to hospital and responded well to treatment. Agnes was discharged home with medications and information. Agnes became unwell and went to the ER. She was admitted to hospital and responded well to treatment. Agnes was discharged home with medications and information. Non-compliant patient?

32. Insanity: Doing the same thing over and over again and expecting different results.” • [Albert Einstein]

33. Agnes and two blue pills

34. "There comes a point you have to stop pulling people out of the river, get upstream and find out why they're falling in."[Desmond Tutu]

35. iii. Capture and engage

36. Engaging patients and whaanau • You do not need high numbers of patients • Develop information about what you are planning to do and the role patients can play • Use methods of engagement that are relevant to the patient group. • Talk to patients / whaanau and ask if they would like to be involved • Identify patients /whaanau who have recently had cause to complain • Clinical staff might identify patients/whaanau

37. Ways of Gathering experiences • Collect stories and thoughts from both patients and staff • Structured conversations • Shadowing • Still photography and film provides compelling illustration • Creation of story boards • Diaries • Intercept interviews • Observe patients and staff delivering and receiving the service

38. observation • People do not always do what they say they do • People do not always do what they think they do • People do not always do what you think they do • People cannot always tell you what they need • Observation lets you find out what people really do and need [IDEO, 2006]

39. The story of the toilet roll holder

40. Intercept interviews One-one-one, short interviews ‘on location’. Useful for gathering immediate impressions of a large number of people. Can be used in conjunction with visual aids.

41. Service Selection

42. Experience of services

43. IV. Explore, understand and develop

44. 3. Map the emotions (highs and lows) to the touchpoints 2. Find the touchpoints 1. Identify emotions Understand the experience

46. Identifying emotions • Watch this film and write down the emotions that the patient talks about. • Write positive emotions above the line and negative emotions below the line. • Remember that they may not be ‘pure’ emotion words but that you are gathering the emotions and memories from the patient story to understand the experience.

47. Video showing emotions • Movie: Sheila shares her experience (1:30)

49. Experience questionnaire This is a tool that can be used on its own or as a starting point for understanding which part of the pathway you might want to focus on.

50. Using Words [Developed by the NHS Institute for Innovation and Improvement; adapted by many.]