Measuring what matters most – PROMs, PREMs and experience

1. Measuring what matters most – PROMs, PREMs and experience Dominique Allwood Public Health Registrar Innovation Fellow, UCL Partners E: Dominique.allwood1@nhs.net T: DrDominiqueAllw

2. PICH Objectives for this session • Understand the importance of patient experience • Different ways of collecting patient experience • Understand how to use patient experience and co-production to improve services

3. Experience Outcomes Safety 1. Why is it important? • Quality of care • Darzi Definition – ‘Clinically safe, effective and personal’

4. Process Experience Outcomes Types of measures Processes are what happenedto people such as how long they waited or stayed, or about whether aspects of care were provided. They are often proxies for outcomes or experience Experience is about how people felt during their care, for example being treated in a caring way, or being involved in decisions or feeling informed Outcomes are about results that patients get when seeking treatment, for example improvement in functioning or the ability to live ‘normal’lives

5. Quality Measures • Process Measures • Waiting times • Admissions/readmissions • Use of protocol or guidelines • Experience measures • Patient satisfaction • FFT • PREMs • Outcome Measures • Clinical measures such as improvement in HbA1c • Reduced mortality • PROMs - Improved symptoms, QoL, functioning

6. PROMs and PREMS • There has been a national move to the development and application of patient-reported outcome and experience measures (PROMs and PREMs) as a means of increasing patient-led assessment of their health (i.e. PROMs) and healthcare (i.e. PREMs) • Measuring what matters most • Individual service users, capturing data at the level of the individual • Self reported • ‘Measures’ – so generally survey based • Children aged eight years and above believed to be competent to complete questionnaires

7. PROMs • Define what children and young people and parents think is important • Develop ways of measuring these – usually through surveys • Frequently developed PROMs to assess change in outcomes on: • communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, behaviour, toileting and safety have been identified as important by parents

8. PREMs • Define what children and young people and parents think is important • Develop ways of measuring these – usually through surveys • Frequently developed PREMs to assess experience include…..

9. Patient Experience:Have you ever been a patient? What were the most memorable aspects of the service other than being ill?

10. Some ‘domains’ of Experience • Access to the service – opening times, parking • Information given – format, content, • Involvement in care • Co-ordination/Organisation of clinic service • Caring, respectful • Follow- up – The most important in integration: who to contact with further queries, knowing what to expect about the next step in care as this is often a source of great anxiety for patients and it has been shown if you score highly on this you are much more likely to reduce 'inappropriate' use of services.

11. Picker Paediatric PREMs Surveys ED, Inpatients, Outpatients • Booking, arrival and wait • Care from Doctors, care from other healthcare professionals • Information and communication • Privacy • Involvement in decisions • Environment • Overall impression

13. 2. Collecting patient experience Usually quantitative – numbers, counting, % who answered… • Friends and Family Test • PREMs – usually surveys • Shadowing/observations • EBD - often video interviews • Photographs • Focus groups, events • Complaints Usually qualitative – descriptions, explanations, emotions Difference between experience vs. Satisfaction

14. PICH Objectives for this session • Understand the importance of patient experience • Different ways of collecting patient experience • Understand how to use patient experience and co-production to improve services

15. Experience Based Co-Design

16. Origins of Experience Based Co-Design Draws experience from design science • Making sense of users world and finding solutions • Modeling, prototyping • Direct user involvement • Focus on designing experiences rather than systems or processes • Performance – effective, functional • Engineering– Safe and reliable • Aesthethetics of experience – how does it feel, how is it experienced

17. Example of QI Methods - EBD NHS Institute Tool - Experience Based Co-Design Capture – surveys, interviews Understand – emotional mapping Improve – co-design Measure – is the intervention working https://www.youtube.com/watch?v=V0XI3C0eLo0

18. How to capture Step 1. Capture information through • Observing patients and staff in the service • Interviewing patients and staff • Videos • Photos • Focus groups • Events • Patient journeys, shadowing

19. How to understand Step 2. Understand through • Emotional mapping • Using videos • Bringing patients and staff together to reflect on experiences • Look at emotions • Emotions that are good that we want to keep, enhance amplify • Emotion that you want to change • Identifying ‘tough points’ and areas to focus on

20. How to Co-design Approaches • Don’t seek input from patients and families • Listen to patients and families and go off and design • Design together Stages • Set up • Engage staff ad gather experience • Engage patients and families and gather experiences • Bring patients and staff together to share experiences, identify touch points • Begin prioritization and co design • Detailed co-design activities • Come back together for reviews, celebrate, renew

21. Video on intro to EBCD http://www.institute.nhs.uk/quality_and_value/experienced_based_design/the_ebd_approach_%28experience_based_design%29.html

22. Examples of Patient Journeys – capture and understand

23. The experience based bit….. Audit of general paediatric outpatient attendances at Whittington in Jan 2012 highlighted constipation amongst the top five presentations that may be more ‘appropriately managed’ in a different setting in order to improve experience and outcomes

24. Aims Objectives of this part of the project Capture patient pathways for constipation Understand patient/family experience Identify areas for improvement in care pathway Capture baseline to look at improvements To feed into wider aims To improve integration of care To improve communication between services and families To improve patient access Bring care closer to home

25. Patient Journeys • patients who had presented in a variety of ways with constipation (via 10-12 clinic, ED, GP referral to OPD) • Interviewed 6 patients in different settings • Patient experience interviews – 2 examples • Journey 1. Mum of a 2 year old with constipation visited in family home • Journey 2. Mum of an 11 year old with chronic constipation visited at Whittington

26. Patient 1 Walk-in Centre OPD 10-12 clinic GP 2 year old baby presenting with blood in nappy – health service contacts A & E Home Ward

27. Patient 2 11 year old boy with chronic constipation – contacts with services

28. Key Themes

29. ’Have been coming every three months for the past 4 years’ Had to wait more than 1 month for appt after discharge Have to come back every 4 weeks – ‘hell’ ‘Not seeing much progress’ 3 months is quite long to wait if things aren’t working. Can’t speak to anyone earlier My son has confidence in Dr Robbins Really impressive service, Dr apologized Nice waiting area Experiences Very nice on the ward, offer dinner Staff very good Whilst IP, happy Drs took it seriously Son hates going to ward as knows he will have an enema No discharge letter Ward OPD GP Wendy is helpful, ‘explains things’ Can also call her Seen 3 different psychologists, not all nice – ‘they change all the time’ ‘One of them wanted to give up, said she couldn’t do anything. Not really helpful’ ‘Given sticker chart but not really caring about it… something more motivational – 11yrs old Psychologist Had to ask the GP ‘too many times’ to go to be referred to the hospital Given liquid, not helpful Contradictory 3 month referral time – expected time to see a specialist ED School Red = negative Blue = positive Community Paediatrician Seen by 3 different doctors – all said different things ‘Waited 4 hours, to be told to come back the next day to 10-12 clinic ‘Testing my story’ having to keep repeating myself, felt like I was in court Happy they took me seriously Took Dr Robins to A&E ‘I took all the therapist reports to the SENCO but no response’ Referred to community pediatrician in Islington but lives in Hackney. ’We got a letter to say we can’t be seen’

30. Emotional Mapping – Constipation in Children

31. Experience Journey:Your turn to have a goDescribe a time…..When you were a patient That you went to workThat you went on holiday

32. EBD – Colorectal Pathway

33. EBD – DVT Pathway

34. Staff were invited to take photos of the hospital and tell us what it means to them. Women waiting in ante-natal Ward and invited workshop participants were then invited to view the photos and comment

35. What do you like to see? What isn’t working? What do you like to see? What is working? “Baby pictures on Murray Ward” “Bland colours” “Babies, mums with babies” “Babies of 2013, women’s experiences” “Very little on wards” “Thank you cards, Positive experiences” “Information giving” “Need to centralise information” “2013 babies –very personal”

36. Foetal Medicine - scanning How does this make you feel? “Too clinical” What do you think women need in this environment? “See scan during procedure” “Comfortable couch” “Tea & coffee, good facilities” “Temperature cooler/air con” “To feel comfortable” “Automatic doors e.g. women and buggies” “Good facilities” “Toys/TV for toddlers” “This is the scan room that is being used for Foetal Medicine ………….I believe women that encounter potential problems with their pregnancies and need to be seen in Foetal Medicine deserve a better environment, in any case something that does not look like a construction site” Consultant in Obstetrics & Foetal Medicine

37. Women were invited to view the whole maternity pathway and highlight their experiences and how the environment impacted on their personal journey

38. Women & Staff Workshop “Effective & efficient admin” “”Consistency of Service & advice” Values - What participants highlighted on the day “Accessibility” “Clear guidance” “privacy” “low lighting” “”Friendly staff” Service & staff “Competent staff” “Quiet” “Cleanliness” Environment “Confidence in staff “”Share what’s Happening” “homely” “Ability to sleep” “”Consistency of care” “Good equipment support” “Practical spaces” “Visit anytime” Processes “Links between Services” “Streamlined discharge – avoid delays” “Good information” “Good IT support”

40. We applied EBD techniques Emotional mapping in maternity How did you feel? Identifies ‘touch points’

41. Emotional mapping summary How did you feel? Identifies ‘touch points’ Touch point

42. Emotional Mapping:Your turn to have a goDescribe a time…..When you were a patient That you went to workThat you went on holiday

43. How we started co-design - priorisation Essential Significant benefit to staff or women Nice to have “Storage facilities” “Mum, baby, family friendly environment” “Staff rooms – we want happy staff!” “Large midwives station, better designated to view all beds” (the phones can be disturbing – patient) “Proper nursing station” “Decorated in calming, neutral colours” “Toys for children in waiting areas” “Lots of windows to prevent jaundice and depression” “Showers (showers on labour ward are awful)” “Treatment room” “Access to drinks/snacks” “Women involved in planning, managing expectations, informed choice” “Chairs that convert into beds – women would be prepared to hire” “Double beds” “Somewhere to lock valuables” “Toilets for relatives on wards or nearby” “Breast pumps for women to hire” “TVs” “Base for breastfeeding with storage for equipment and leaflets (staff think it will be nice rather then women asked)” “Create a visual and warm environment” “Parent room/soft space” “Get rid of all curtains and replace with clean ones” “Separate designated spaces on Murray Ward for women in labour and those not in labour” “Ward Mangers office” “Dads showers” “Designated visitors area (one woman ‘dead against it’) “Get rid of Bounty Pack” “Area for patients to relax/quiet rooms” “Client dining area” “Better access to vending machines” “Healthier meals for clients”

44. QI methods I use – ‘Last 10 patients’ • ‘Last 10 patients’ method • Following and timing patients - indicated where hold ups in pathway were. • Shows how long patients actually spent waiting - purple and orange • Powerful when added with ‘patient stories’

45. Emotional Mapping • Your turn to have a go • Describe a time….. • When you were a patient • That you went to work • That you went on holiday

46. Examples of EBD in an improvement project

47. What we did to understand patients experience…….

48. What we did to understand staff experience…….

49. Model for Improvement What are we trying to accomplish? How will we know if change is an improvement? What changes can we make that will result in improvement?

50. Model for Improvement Improve patient experience and shorten waiting times for diagnosis for patients presenting to ED with possible DVT by: • Reducing time spent in ED by at least 30 minutes • Preventing ‘admission’s to CDU What are we trying to accomplish? • Process measure: reduction in time between arrival and discharge • Process measure: reduction in ‘admissions’ to CDU • Outcome: Improvement in patient experience measured through interviews and surveys (quant and qual) • Balancing measure: no sig increase in number of USS requested How will we know if change is an improvement? • Trial booking appointments for USS scan • Remove d-dimertesting for pts with suspected DVT • Simplifying clinical guideline from 8 pages to less than 3 • Experience Based Co-design of patient passport What changes can we make that will result in improvement?