Using Experience-based Co-design to improve patient experience and staff wellbeing. approach. Professor Glenn Robert King s College London

Transcription

1 Using Experience-based Co-design to improve patient experience and staff wellbeing Lessons so far and adapting the approach Professor Glenn Robert King s College London

2 Origins Development, Adoption, Adaptation, Future directions 2014 onwards

3 ORIGINS

4 Patient experience as the weakest link in the Quality tripod? Clinical effectiveness Patient experience Safety But since 2005 evidence base emerging that: Organisations that are more patient-centred have better clinical outcomes and are safer Improved doctor-patient communication leads to greater compliance in taking medication and can enable greater self-management for people with long-term chronic conditions Individuals anxiety and fear can delay healing Source: Jocelyn Cornwell, The King s Fund

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6 Design theory draws its inspiration from a subfield of the design sciences such as architecture and software engineering distinctive features are: direct user and provider participation in a face-toface collaborative venture to co-design services, and a focus on designing experiences as opposed to systems or processes (thereby requiring ethnographic methods such as narrative-based approaches and in-depth observation)

7 What makes a good service: designing experiences Performance Engineering The Aesthetics of Experience Is it efficient? Lean Is it safe and reliable? Safer Patients Initiative What does it feel like? Physical environment EBCD Human environment Berkun, 2004 adapted by Bate

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9 Healthcare quality improvement from a design perspective must obviously fulfilthe core task and be safe (performance and functionality) must appeal at the emotional and sensory level (aesthetic) patients & carersneed to be active rather than passive, using their specialist form of knowledge (experience)

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11 DEVELOPMENT,

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13 A participatory action research approach that combines: a user a user-centred orientation (EB) and a collaborative change process (CD) 13 ANZAM

14 Where user and provider can work together to optimise the content, form and delivery of services. At its most highly participative extreme, this process is referred to as codesign and entails service development driven by the equally respected voices of users, providers and professionals. DEMOS, 2008

15 celebration event setting up small co- design teams Online EBCD toolkit engaging staff and gathering experiences co-design meeting engaging patients and gathering experiences

16 Staff: a deep dive

17 Experience sa sfac on Patient survey Overall, did you feel you were treated with respect and dignity while you were in hospital? Yes, always Overall, how do you rate the care you received? Excellent The other thing I didn t raise and I should have done because it does annoy me intensely, the time you have to wait for a bedpan..elderly people can't wait, if we want a bedpan it s because we need it now. I just said to one of them, I need a bedpan please. And it was so long bringing it out it was too late. It s a very embarrassing subject, although they don't make anything of it, they just say, Oh well, it can't be helped if you re not well. And I thought, Well, if only you d brought the bedpan you wouldn't have to strip the bed and I wouldn't be so embarrassed. 17

18 Emotional mapping exercise

19 What to do with these experiences? Identifying touchpoints Touchpoints critical points big moments (good and bad) moments of truth emotional hotspots

20 Some typical touch points of head and neck cancer patients

21 A touchpoint: radiotherapy planning

22 celebration event setting up small co- design teams engaging staff and gathering experiences co-design meeting engaging patients and gathering experiences

23 Co-design event patients and staff together watch film of patient interviews hear what the patients have prioritised hear what staff have prioritised patients and staff agree on priorities form working codesign groups to make these improvements

24 6 co-design teams 70 actions 43 improvements weighing scales staff training needs analysis patient information: PEG feeding tube physical environment in outpatient clinic

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26 ADOPTION,

27 EBCD in Australia EDs in seven hospitals in NSW 3 EDs (stage 1) 4 EDs partnered with another department (stage 2) variation in implementation: patient interviews (mean 24) staff interviews (mean 37) 0-41 hours of observation (mean 10)

28 Reception patient experience 28

29 Reception staff experience 29

30 Common improvement priorities in all 7 EDs: patient & carer comfort and privacy physical space for staff & patients communication & information flow For example: designated nurse to manage waiting room and communicate with patients informed waiting training for all staff ED redesignedto ensure both triage nurse and clerical staff have clear view of the waiting area

31 The primary strength of EBCD over and above other service development methodologies was its ability to bring about improvements in both the operational efficiency and the inter-personal dynamics of care at the same time.

32 EBCD teaches project staff new skills; it enables frontline staff to appreciate better the impact of health care practices and environments on patients and carers; it engages consumers in deliberative processes that were qualitatively different from conventional consultation and feedback.

33 Breast & lung cancer services, London Knowledge & skills transfer: trained 2 in-house QI specialists mentored through the process Fieldwork involved: 36 filmed narrative patient interviews 219 h of ethnographic observation 63 staff interviews a facilitated EBCD process over 12-month period Mapped quality improvements and studied sustainability 7 co-design groups 56 quality improvements implemented months after initial implementation, 66% of improvements sustained Quick fix solutions: 28 with 24 sustained Process redesign solutions: 9 with 5 sustained Cross service or interdisciplinary solutions: 14 with 8 sustained Organisationallevel solutions: 5 with 2 sustained Crucial role of facilitators in determining staff experiences of the EBCD approach

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37 EBCD toolkit views and EBCD toolkit video views (August 2011 to June 2012)

38 Survey summer

39 Thinking about your project/s, what were the strengths of the EBCD approach? Answered: 41 Skipped: 20 It really engaged patients/carers It really engaged straff It allowed discussion of difficult topics in a supportive environment It led to clear improvement priorities It really made a difference to the way we do things around here 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

40 Thinking about your project/s, what were the weaknesses of the EBCD approach? Answered: 41 Skipped: 20 It took too long It was too compilicated It cost too much Staff did not engage with the project Patients/carers did not engage with the project 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%

41 Survey findings Training and support: 50% of those who have led EBCD projects did not receive any formal training Role of non-participant observation: relatively under used as an approach Role of film: 50% of projects included filming patients The scale of change: sweating the small stuff Co-design: a complex social intervention that is challenging to implement & whose impact and outcomes are difficult to evaluate Evaluation: less than half were aware of the costs of their project(s); no formal cost-benefit or costeffectiveness studies of EBCD have been undertaken

42 ADAPTATION, 2011 ONWARDS

43 Examples of adaptation of approach EBCD as an integral part of development and evaluation of a complex intervention: enhancing the role of carersin the outpatient chemotherapy setting, Guys & St Thomas NHS Foundation Trust Adapting EBCD to mental health care settings: acute mental health ward, OxleasNHS Foundation Trust Faster and cheaper: accelerated EBCD in Intensive Care Units and lung cancer services

44 Carers of patients receiving outpatient chemotherapy Leaflet DVD Group consultation

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46 Intervention Control Mean difference Baseline Baseline Followup Followup 95% CI p value Practical advice about managing cancer symptoms to 39.1 <.001 Information to <.01 Needs Scale Confidence in supporting patient if their health gets worse to

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48 EBCD process Recall lived experience Produce video statement from lived experience Present video and lived experience to professionals Potential stress points in acute mental health Re-traumatisation Reify the identification of person and the worst point in their life in a context of stigma Fear of loss of control over confidentiality Fear of whistle-blowing but potentially needing to go back Fear of real power dynamic Rekindle legacy of provideruser antagonism Resolution factors Structured recall within a preexisting group Explicit linking of process to improving services, back up by senior management involvement. Control of all aspects of consent, data protection, video production and dissemination. Intense support from pre-existing group prior to joint meeting. Open sharing of frustration by all involved. Senior managers demonstrating authority as a means of keeping the project safe for all.

49 Staff questions to service users What does a well conducted admission look like? How can staff apply blanket rules (such as removing shoelaces, razors and personal items) whilst still attempting to build an alliance with new patients? What are the basic needs of a ward patient? How can conflict be dealt with well?

50 Actions ward put in place daily patient experience groups led by the ward manager structured around asking patients for their experience of the emotional touch points identified in the films feedback could then be dealt with speedily if needs be; consistent concerns fed back into staff supervision continued link between ResearchNeton ward ( Ask me anything sessions, Good practice in restraint sessions, DVD of what to expect from admission). DVDs used for management planning of admission processes

51 Outcomes (intervention was July 2012) Jan Feb Mar Apr May Jun July Aug Sept Oct Nov Dec

52 On a personal level this has been a memorable journey. When I was on the ward I would never had imagined being part of this work. If I could have seen myself in the future I would never had believed it. I thought my life was over. Now I m alongside the ward manager as a colleague not a patient. To turn a terrible experience into something productive has been fundamental to my recovery and more importantly challenges stigma which needs to be challenged hard. (service user)

53 Getting to the CORE: testing a co-design technique to optimisepsychosocial recovery outcomes for people affected by mental illness A$1.8 million cluster RCTled by Dr Victoria Palmer, University of Melbourne Research partners: Victorian Mental Illness Awareness Council; Victorian Mental Health Carers Network: and 8 community health centres across Victoria investigating the impact of consumer and staff co-design of mental health services at a range of community health centresacross Victoria expected to improve the recovery outcomes of people affected by mental illness

54 Accelerated EBCD retained all six components of EBCD but shortened the time frame national trigger films rather than locally collected patient narratives employed local facilitators halved the overall cycle from 12 to 6 months 2 ICUs and 2 lung cancer services observed how this affected the change process & outcomes

55 celebration event setting up small co- design teams engaging staff and gathering experiences co-design meeting engaging patients and gathering experiences

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58 48 co-design activities across 4 pathways ICU examples: ipadapplications to assist ventilated patients communicate information for staff and patients on experience and impact of hallucinations correct application of CPAP masks Lung cancer examples: transfer of patient belongings from theatre to recovery ward private rooms for receiving support after diagnosis link nurse scheme to improve cross-site working

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60 for me this is about Oh God, they re our patients aren t they? when people watch the film they might think, I remember that lady, they know they re our patients -they can t get away from the fact -but it actually makes it more real for them. Whatever way they re captured, it s about capturing it so that people recognise these are patients I have cared for, nursed, met, who are saying this and I think that s what is do different from other improvement work in terms of things like discovery interviews and focus groups: it s that direct connection between them. It was one of the most meaningful things I ve ever done in my entire career I think. That s sounds really trite, but I really do mean it, it was wonderful. I am glad I had the opportunity even though I felt like an emotional ragdoll by the end of it. It was a great experience. If we could do more of it I think it would really help. It s the level of engagement that we should do, but we just don t invest the time, and the energy, and the money. We wait for complaints...

61 The biggest untapped resources in the health system are not doctors but users. We need systems that allow people and patients to be recognisedas producers and participants, not just receivers of systems At the heart of [codesign]users will pay a far larger role in helping to identify needs, propose solutions, test them out and implement them, together. Design Council, 2004

62 FUTURE DIRECTIONS

63 launch of revised toolkit (November 2013) & LinkedIn group piloting of accelerated version of EBCD, developed in response to practitioner wishes for a quicker path to identifying co-design improvement priorities and implementation of solutions inclusion of an introduction to EBCD in NHS Leadership Academy online programme to be delivered to 4000 health and social care staff in England in the next 3 years NHS England funding for a new train the trainers course in EBCD hosted and facilitated by the Point of Care Foundation more rigorous and robust studies of the effectiveness of EBCD, ranging from PhD theses, through feasibility trials of co-designed interventions and onto large-scale cluster randomised controlled trials evaluating impact on patient outcomes

64 Further information Online EBCD toolkit: LinkedIn group: ased-codesign Point of Care Foundation EBCD training course: