For 20,000 days Programme October 2013 Date: October 2013 Created by: Dr. Lynne Maher Gathering, Understanding and acting upon patient and family experiences Dr. Lynne Maher Director for

Plan Demonstrate how you can improve health services by focusing on the actual experiences of patients, carers and staff Introduction to a few tools and techniques that teams find helpful Share some stories There will be some interaction and table work

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 to supports them with their health needs”

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) What Matters to Patients (England 2011)

Interactions are really important

Patient experience does affect clinical outcomes Catheter-related bloodstream infections occur 56% more frequently in hospitals with low patient ratings for nurse or doctor communication Reed K. (2012) Health Grades Patient Safety and Satisfaction

We need to learn from …The Garling Report “Patient experience and satisfaction is one of the most important indicators alongside access to hospital services, clinical performance, safety and quality of the clinical care, costs associated with the provided clinical care, staff experience and satisfaction and sustainability”. Special Commission of Inquiry into Acute Care Services in NSW Public Hospitals (Commissioner Garling, 2009)

We need to learn from–Mid Staffordshire, UK Need for a common culture of ‘putting patients first’ “Every single person serving patients needs to contribute to a safe, committed and compassionate and caring service” Need for strong, patient centred healthcare leadership

© NHS Institute for Innovation and Improvement 2009

The ebd approach is… …about using experience to gain insights from which you can identify opportunities for improvement …about experiences not attitudes or

The components of good design Berkun, 2004 adapted by Bate Performance Engineering The aesthetics of experience How well it does the job /is fit for the purpose How safe, well engineered and reliable it is How the whole interaction with the product/service ‘feels’/is experienced Functionality Safety Usability + +

How might you use patient experience methods As a regular way to understand patient experiences In an area where you have challenges- perhaps where you know you have a number of complaints As a critical part of an improvement project

“The biggest untapped resources in the health system are not doctors but users (of the service). We need systems that allow people and patients to be recognised as producers and participants, not just receivers of systems … At the heart of the approach users will pay a far larger role in helping to identify needs, propose solutions, test them out and implement them, together.” Source: Design Council, 2004 Oh gosh, is this yet another thing I need to add to my workload?

3 Ways to do service improvement 1.Don’t listen very much to our users and we do the designing 2. Listen to our users then go off and do the designing 3. Listen to our users and then go off with them to do the designing (Professor Paul Bate 2007) © NHS Institute for Innovation and Improvement 2009

Understanding the needs of people living with Multiple Sclerosis

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

Experience Based Design is about designing better experiences… © NHS Institute for Innovation and Improvement

You do not need high numbers of patients Develop information about what you are planning to do and the role patients can play Talk to patients Identify patients who have recently complained Clinical staff might identify patients Use methods of engagement that are relevant to the patient group. Engaging patients

Collect stories and thoughts from both patients and staff –Structured conversations –Story boards –Still photography and film provides compelling illustration –Diaries Observe patients and staff delivering and receiving the service Getting patients and staff involved Helping people tell their stories Getting patients and staff involved Helping people tell their stories Gathering experience…

Ruth Wickens and Nick White: Understanding and improving patients’ experience of the radiotherapy mask 4 in depth conversations

Norman “ There were two things that surprised me: one was the size of it. When you think about a mask you think quite small, just covering your face, whereas the mask that was produced was a big mask that went right down covering the shoulders. The other thing was that I didn’t expect it to be attached to a horizontal position – that was a surprise. Those two things made it hard to cope with initially, from being told I needed a mask to the actual reality of what that meant.”

Judy “ Once again when that silence would kick in I’d be saying to myself, “What’s happening? Someone please talk to me”. It might seem a very short time to someone who’s on the other side of the wall and working on the machine, but that silence can be a very long time when you’re lying there and wondering what on earth’s going on.”

Cheryl & Phil “ You’re in, you’re bang, you’re on the table, your mask is put on, I never had the chance to look around the room.... Your head is fighting to say I want to get out of this, I want to get away.” “Your head is fighting to say I want to get out of this, I want to get away, being nauseated, held down, having something in your mouth – it was horrible.”

Patient pictures/storyboards can be highly impactful © NHS Institute for Innovation and Improvement 2009

Rather than asking…. “What’s the matter with you” Try asking ….. “What matters to you” Maureen Bisognano IHI

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

Film....an example coming later

Experience Questionnaire This is a tool that can be used on it’s own or as a starting point for understanding which part of the pathway you might want to focus on…

Experience questionnaire- developed by the NHS Institute for Innovation and Improvement adapted by many © NHS Institute for Innovation and Improvement 2009

Numbers, numbers… Breadth Depth Conversations Shadowing Filming Observation Emotion questionnaire Focus groups Observation

Experience Based Design is about designing better experiences… © NHS Institute for Innovation and Improvement

“It is more important to know what sort of a person has a disease than to know what sort of disease a person has”. Hippocrates

Understand the experience This part of the patient experience approach is where you really begin to understand your service in terms of how patients, carers and staff experience

Understand the experience There are three phases– they are closely linked and one leads naturally on to the other: Identifying emotions Emotions how people feel through their journey e.g. scared

Understand the experience 2) Finding the ‘touchpoints’ Touchpoints moments of engagement How I feel at stages of my journey e.g. finding a car parking space/ going into surgery/going home

Understand the experience 3) Mapping the emotions (highs and lows) to the touchpoints. Going home Arriving Safe Angry Delighted Anxious Confused

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

Shelia- video showing emotions

Patient waits to sees consultant Patient goes to different department for investigations (X- Ray/Pathology Patient sees consultant Patient arrives at car park Patient navigates to clinic Patient arrives at clinic Patient registers with reception Patient navigates to department +ve -ve frustrated relieved anxious informed nervous worried unsure pleased upset It took ages to find a car parking space and then I found it was a 15 minute walk to the outpatients clinic. How frustrating! The room was cluttered with out of date magazines and notices on the walls and I was already feeling really nervous I wasn’t sure where to go – the signs were difficult to follow Emotional mapping

Emotion mapping and flow mapping- Christchurch New Zealand

Themes from emotion mapping – Christchurch New Zealand

Experience Based Design is about designing better

Improve the experience “Experience based co-design positions patients as active partners with staff in quality improvement” (Tsianakas et al

Involve patients/carers and staff Create ‘co-design’ teams Be clear about actions needed and impact desired Use improvement tools and techniques Co-design - turning experience into action Improve the experience

Planning an experience event Working in partnerships with patients can create some apprehension, but it has the potential to transform health services Plan the date in advance Make sure everyone can get to the event Use ‘simple English’ Staff are often as nervous as patients/family members Staff may try to ‘take control’ facilitation is important Do not leave without next action steps

Action Planning A personal responsibility… Hugh McGrath-Patient Julie - Clinic Receptionist John Pickles-Consultant

What do we learn from our experiences? Bust the myth – Patients do not want a ‘gold plated service’ They want a good experience Patients and staff see each other in a different way…as people Confidence for improvement action grown for all

Experience Based Design is about designing better experiences… © NHS Institute for Innovation and Improvement

Measurement: Key to all improvement work AIM CHANGE MEASURE RAPID CYCLE IMPROVEMENT Langley et al. “The Improvement Guide: A Practical Approach to Enhancing Organizational Performance.” What are we trying to accomplish? How will we know if a change is an improvement? What changes can we make that will result in improvement? PLAN DO STUDY ACT

Reduction in Time Reduction in duplication Reduction in steps Increase in Safety: reduction in error and cost Improve Patient Experience: Reduction in handoffs Reduction in complaints Increase in Effectiveness Adherence to standards/protocols; reduction in variation Measure the improvement: the quantitative perspective

Measuring “ what matters more than raw data is our ability to place these facts in context and deliver them with emotional impact” Daniel Pink –A whole new mind 2008 “ the point is to emphasize that each of the cases involved an actual human being. Describing them as a percentage would dehumanize the physical impact on a real person, someone's mother, father, sister, or brother” Paul Levy CEO 2008 © NHS Institute for Innovation and Improvement 2008

Measure improvement: the qualitative perspective Collect stories Observe Use mapping techniques Before and after – from and to

One word to depict how patients feel about your care (before)

How patients felt about care after improvements

Use Quantitative and Qualitative reporting together FROMTO Registration: frustrated, nervous Registration: calm, understanding

“Nothing about me, without me”

@LynneMaher1

Further Reading Bate, SP. Robert, G. (2007) Towards more user-centric organisational development: lessons from a case study of experience-based design. J Appl Behav Sci 43(1):41–66 Boyd, H. McKernon, S. Mullin,B. Old, A. (2012) Improving healthcare through the use of co- design. NZMJ, Vol 125 No 1357 Dewar B et al (2009) Use of emotional touchpoints as a method of tapping into the experience of receiving compassionate care in a hospital setting. Journal of Research in Nursing. Sage Publications Doyle. C, Lennox. L, Bell. D. (2013) A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open 2013;3:e doi: /bmjopen Luxford, K. Piper, D. Dunbar, N. Poo,e. N. ( 2011) Patient Centered Care Improving quality and safety through partnerships with patients and consumers. Australian Commission for Quality and Safety in Healthcare.

Further Reading Maben et al ( 2012) ‘Poppets and parcels’: the links between staff experience of work and acutely ill older peoples’ experience of hospital care. International Journal of Older Peoples Nursing. Blackwell Publishing Piper, D. Iedema, R.(2010) Emergency department co-design stage 2 evaluation—report to health services Performance improvement branch, NSW Health, Centre for Health Communication. University of Technology, Sydney Reeves, R. West, E. Barron, D. ( 2013) Facilitated patient experience feedback can improve nursing care: a pilot study for a phase III cluster randomised controlled trial BMC Health Services Research 2013, 13: /13/259http:// Tsianakas et al (2012) Implementing patient-centred cancer care: using experience-based co-design to improve patient experience in breast and lung cancer services. Support Cancer Care. DOI /s Weiner, S. et al (2013) Patient-Centered Decision Making and Health Care Outcomes. Annals of Internal Medicine Volume 158. Number 8.p573