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Glyn Elwyn presentation WSPCR 2011

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  • 1. Option Grids: tools that make shareddecision making easier for clinicians andpatientsProfessor Glyn ElwynInstitute of Public Health and Primary Care
  • 2. MAGICImplementing shared decision makinginto practice in the UK
  • 3. Newcastle CardiffRichard Thomson Glyn Elwyn Acknowledgements: The Health Foundation, Cardiff and Vale Health Board, Newcastle upon Tyne Hospitals NHS Foundation Trust, and most importantly all staff and patients involved across both sites
  • 4. Background:The Health Foundation - An independent charity working to improvethe quality of healthcare in the UK • Leadership and organisations • Patient safety • Changing relationships between people and health services • Engaging healthcare professionals 18 months project: started August 2010 Further 18 months funding agreed February 2012
  • 5. Are patients involved? 100 90 80 70 60 46 46 47 47 48 49 48 48 50 40 30 20 10 0 2002 2003 2004 2005 2006 2007 2008 2009 Wanted more involvement in treatment decisions Source: NHS inpatient surveys
  • 6. I prefer thisoption …
  • 7. Shared decision makingShared decision making occurs when clinicians andpatients communicate together using the best availableevidence when faced with the task of making decisions
  • 8. Shared decision makingShared decision making occurs when clinicians andpatients communicate together using the best availableevidence when faced with the task of making decisions,where patients are supported to deliberate about thepossible attributes and consequences of options
  • 9. Shared decision makingShared decision making occurs when clinicians andpatients communicate together using the best availableevidence when faced with the task of making decisions,where patients are supported to deliberate about thepossible attributes and consequences of options, toarrive at informed preferences in making a determinationabout the best action and which respects patientautonomy, where this is desired, ethical and legal.
  • 10. Patient decision support / decision aids: The evidenceIn 86 trials addressing 35 different screening or treatmentdecisions, use has led to:• greater knowledge• more accurate risk perceptions• greater comfort with decisions• greater participation in decision-making•F ewer people remaining undecided• fewer patients choosing major surgery.Stacey et al. Cochrane Database of Systematic Reviews, 2011
  • 11. MAGIC Making Good Decisions in Collaboration with PatientsThe MAGIC Framework: Action learning with indicator feedback, located in a social marketing contextand supported by organisational level leadership. Indicator ENT Feedback Breast Surgery Project Start Primary Care Obstetrics Social Urology Marketing Senior Management Clinical Leadership
  • 12. • Evidence-based patient decision MAGIC Making Good Decisions in Collaboration with Patients support The MAGIC Framework: Action learning with indicator feedback, located in a social marketing context and supported by organisational level leadership. Indicator ENT• Social marketing Feedback Breast Surgery• Clinical skills development Project Start Primary Care Obstetrics• Organisation and clinical team Social engagement Urology Marketing• Measurement with rapid feedback, Senior Management Clinical Leadership Plan Study Do Act cycles.• Patient and public engagement
  • 13. Early learning from MAGIC
  • 14. Challenges of implementing shared decision making• Response to change• Clinical complexity• Medical culture • Paternalism • Clinical care pathway• Time and resources
  • 15. Identifying challenges
  • 16. OptionGrid Lumpectomy with Radiotherapy Mastectomy Which surgery is best There is no difference There is no difference for long term survival? between surgery options. between surgery options. Breast cancer will come Breast cancer will come back in the breast in back in the area of the What are the chances about 10 in 100 women in scar in about 5 in 100 of cancer coming back? the 10 years after a women in the 10 years lumpectomy. after a mastectomy. The cancer lump is The whole breast is What is removed? removed with a margin of removed. tissue. Possibly, if cancer cells remain in the breast after Will I need more than No, unless you choose the lumpectomy. This can one operation breast reconstruction. occur in up to 5 in 100 women. How long will it take to Most women are home 24 Most women spend a few recover? hours after surgery nights in hospital. Unlikely, radiotherapy is Will I Yes, for up to 6 weeks not routine after need radiotherapy? after surgery. mastectomy. Some or all of the lymph Some or all of the lymph Will I need to have my glands in the armpit are glands in the armpit are lymph glands removed? usually removed. usually removed. Yes, you may be offered Yes, you may be offered chemotherapy as well, chemotherapy as well, Will I usually given after usually given after need chemotherapy? surgery and before surgery and before radiotherapy. radiotherapy. Hair loss is common after Hair loss is common after
  • 17. OptionGrid Lumpectomy with Radiotherapy Mastectomy Which surgery is best There is no difference There is no difference for long term survival? between surgery options. between surgery options. Breast cancer will come Breast cancer will come back in the breast in back in the area of the What are the chances about 10 in 100 women in scar in about 5 in 100 of cancer coming back? the 10 years after a women in the 10 years lumpectomy. after a mastectomy. The cancer lump is The whole breast is What is removed? removed with a margin of removed. tissue. Possibly, if cancer cells remain in the breast after Will I need more than No, unless you choose the lumpectomy. This can one operation breast reconstruction. occur in up to 5 in 100 women. How long will it take to Most women are home 24 Most women spend a few recover? hours after surgery nights in hospital. Unlikely, radiotherapy is Will I Yes, for up to 6 weeks not routine after need radiotherapy? after surgery. mastectomy. Some or all of the lymph Some or all of the lymph Will I need to have my glands in the armpit are glands in the armpit are lymph glands removed? usually removed. usually removed. Yes, you may be offered Yes, you may be offered chemotherapy as well, chemotherapy as well, Will I usually given after usually given after need chemotherapy? surgery and before surgery and before radiotherapy. radiotherapy. Hair loss is common after Hair loss is common after
  • 18. OptionGrid Lumpectomy with Radiotherapy Mastectomy Which surgery is best There is no difference There is no difference for long term survival? between surgery options. between surgery options. Breast cancer will come Breast cancer will come back in the breast in back in the area of the What are the chances about 10 in 100 women in scar in about 5 in 100 of cancer coming back? the 10 years after a women in the 10 years lumpectomy. after a mastectomy. The cancer lump is The whole breast is What is removed? removed with a margin of removed. tissue. Possibly, if cancer cells remain in the breast after Will I need more than No, unless you choose the lumpectomy. This can one operation breast reconstruction. occur in up to 5 in 100 women. How long will it take to Most women are home 24 Most women spend a few recover? hours after surgery nights in hospital. Unlikely, radiotherapy is Will I Yes, for up to 6 weeks not routine after need radiotherapy? after surgery. mastectomy. Some or all of the lymph Some or all of the lymph Will I need to have my glands in the armpit are glands in the armpit are lymph glands removed? usually removed. usually removed. Yes, you may be offered Yes, you may be offered chemotherapy as well, chemotherapy as well, Will I usually given after usually given after need chemotherapy? surgery and before surgery and before radiotherapy. radiotherapy. Hair loss is common after Hair loss is common after
  • 19. PRACTICE VARIATION 1938 10-fold variation in tonsillectomy 8-fold risk of death with surgical treatment “…these strange bare facts of incidence…” “… tendency for the operation to be performed for no particular reason and no particular result.” “…sad to reflect that many of the anesthetic deaths… were due toJ Allison Glover, 1938 Report unnecessary operations.”to Royal Academy of Medicine
  • 20. VARIATION 2009 – 80 YEARS LATER Even for some operations whose effectiveness has been questioned, variations in treatment between PCTs are widespread. The removal of tonsils in children has been queried since the 1930s, yet the rate of tonsillectomies in Coventry PCT in 2009/10 was ten times higher than the rate in Kingston PCT for example.
  • 21. Meet Jennifer…
  • 22. JENNIFER’S TONSILS You are Tracy / Terry Collins, 36 - mother / father of Jennifer, aged 10. You work as a technician at a busy dental practice and rely on your mother for after school care. Jennifer was doing well at school. However. over the last two years she has had what seem like endless colds and tonsillitis. She has an episode every few months. She does not sleep well. She has missed a lot of school and you are worried that she will do badly in her tests. Your mother struggles when she is ill. She also, believes that Jennifer needs to have her tonsils out. You are not quite so sure. But you are beginning to wonder if your mother isn’t right. You have booked an appointment to discuss your daughter and you are going without her. When you left Jennifer at your mothers’ place on the way to the doctors, she told you not to take no for an answer .
  • 23. 29
  • 24. An approach to measuring the quality ofbreast cancer decisions. Sepucha K,Ozanne E, Silvia K, Partridge A, MulleyAG. Patient Education and Counseling.2007: 65(2):261-9. 30
  • 25. Decision Quality Measure • Knowledge • Readiness to decide “DelibeRATE” • Preference • Intention 31
  • 26. Decision Quality Measure Knowledge at diagnosis Knowledge at home visit N=28 N=20 100 100 90Percentage of Patients 90 Percentage of Patients 80 80 70 70 60 60 50 50 40 40 30 Unsure 30 Unsure 20 Correct 20 10 Correct Incorrect 10 0 0 Incorrect Question number Question Number
  • 27. DelibeRATE Scale “readiness to decide” At diagnosis (DQM1) At home visit (DQM2) 100 100 90 90 Percentage of PatientsPercentage of patients 80 80 70 70 60 60 50 50 40 40 30 30 Unsure Unsure 20 20 10 No No 10 0 Yes Yes 0 Question Number Question Number
  • 28. Decision Quality Measure Intention at diagnosis (DQM1) Intention at home visit (DQM2)100 100 90 90 80 80 70 70 60 60 50 50 40 40 30 30 20 20 10 10 0 0 Strong Leaning Not sure Leaning Strong Strong Leaning Not sure Leaning Strong preference towards towards preference preference towards towards preference for mastectomy lumpectomy for for mastectomy lumpectomy for mastectomy lumpectomy mastectomy lumpectomy
  • 29. “Decision Quality – it’s nothing to dowith MAGIC any more – it’s what we doin the breast care team...” Helen McGarrigle Breast Care Nurse Cardiff.
  • 30. Social Marketing• Social marketing to patients• Shift from implementation team to clinical teams• Clinicians and managers - awareness raising and profile
  • 31. Three simple questions to increase information about treatmentoptions and patient involvement in healthcare consultations.Shepherd, HL; Barratt, A; Trevena, LJ; McGeechan, K; Carey, K;Epstein, RM; Butow, PN; Del Mar, CB; Entwistle, V; Tattersall, MHNPatient Education and Counseling 2011. 37
  • 32. Ask three Questions 38
  • 33. Ask 3 QuestionsSometimes there will be choices to make about your healthcare. If you are asked tomake a choice, make sure you get the answers to these 3 questions:What are my options? What are the possible benefits and risks of those options? How likely are the benefits and risks of each option to occur? We want to know what’s important to you
  • 34. Implementation into practice - Lessons learnt so far• Needs multi-faceted, multi-level, sustained strategy• Most important learning to date: • Simple tools Option Grids act as catalysts • DQM: measurement that has clinical relevance • Quality Improvement methods are helpful but not well understood • Importance of policy drivers and incentives