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Isn't this about me? The role of patients and the public in implementing evidence- based healthcare (21 10 15)


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Master Class, led by Professor Richard Thomson- focusing on the role of patients and public in implementing evidence-based healthcare- including shared decision making

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Isn't this about me? The role of patients and the public in implementing evidence- based healthcare (21 10 15)

  1. 1. Collaborating for Better Care Partnership Improving patient care by implementing evidence- based guidance including NICE Guidance,Technology Appraisals & Quality Standards in the North East and North Cumbria
  2. 2. MASTER CLASS ‘Isn’t this about me?’The role of patients and the public in implementing evidence-based healthcare 21st October 2015 9:30am- 4:30pm The Core, Science Central, Bath Lane, Newcastle Upon Tyne
  3. 3. Welcome Ian Renwick Chair, Collaborating for Better Care Partnership Chief Executive Gateshead Health NHS Foundation Trust
  4. 4. Today’s objectives are for you to: • gain an improved awareness and understanding of the value of patients and the public in supporting evidence-based implementation • explore practical implementation using a range of PPI approaches including SDM • gain an improved understanding of how to address your own challenges through working case studies and sharing experience • collaborate in dedicated workshops which will enable you to initiate action plans.
  5. 5. Collaborating for Better Care Partnership Pathways to Impact - Public and Patient Involvement in Research Dr Lynne Corner Director of Engagement Faculty of Medical Sciences, Newcastle University NIHR Diagnostic Evidence Co-operative (DEC) NIHR Newcastle Biomedical Research Centre (BRC) on Ageing and Chronic Disease
  6. 6. Make it clear: the public are important to research excellence
  7. 7. NIHR leadership in public involvement in research • Core principle of National Institute for Health Research (NIHR) • Clear expectation set with research community that it is important to research excellence • £ Investment and practical support • Partnership approach
  8. 8. “I have always taken the view that public involvement in research should be the rule not the exception.” Professor Dame Sally Davies Chief Medical Officer (CMO)
  9. 9. Improving the quality of what we do ‘Only 9% of patients wanted more research on drugs, yet over 80% of randomised controlled trials in patients with osteoarthritis of the knee were drug evaluations.’ ‘Relations between the agendas of the research community and the research consumer’ Tallon et al, Lancet 2000 as cited by Iain Chalmers and Paul Glasziou, The Lancet, 2009
  10. 10. Setting research priorities
  11. 11. Public as Partners “I don’t actually think of the patients who work with us as PPI members: they’re colleagues, they’re people with good ideas. To me, they’re part of the team like the statistician or the qualitative researcher or the clinician. I don’t see a boundary. Patient and public involvement is essential, integral and natural to what we do.”
  12. 12. Increasing effectiveness and efficiency ‘The aim of patient and public involvement is to improve the quality, feasibility and translational value of research...[This] is the first time we can see that patient involvement is linked to higher likelihood of reaching recruitment target – and as a result, study success.’ Professor Til Wykes, Director, MHRN ‘Patient involvement in research boosts success,’ The Guardian, 16/09/13 Paper reference: Ennis, L. et al. ‘Impact of patient involvement in mental health research: longitudinal study’ British Journal of Psychiatry (Sept 2013) doi: 10.1192/bjp.bp.112.119818 Design
  13. 13. Ensuring public confidence • 77% of people said that knowing a Research Ethics Committee had reviewed a study would increase their confidence in it. • 44% of respondents thought that involving patients….would increase their confidence in the study. Ipsos MORI study for HRA: 2013 involvement-increases-public-confidence-health- research/#sthash.x3fCMNWj.dpuf
  14. 14. Public appetite • 82 per cent of people believe it is important for the NHS to offer opportunities to take part in healthcare research. • 3% said they would never take part in a clinical research study. NIHR Clinical Research Networks Survey Oct 2014 • Over 70% of patients look for information about clinical trials ecancer 5 235 2011 ‘Information needs of cancer patients’ Patient experience • National Cancer Patient Experience Survey 2012/2013/2014 – 1 in 3 patients had a discussion about research with a health professional • Discussion much less likely if happening at all for patients with other conditions (i.e. 1 in 5 for type 1 diabetes) • 91% of Trusts do not provide information to support patient choice in research: NIHR CRN CC Mystery Shopper 2013 From willing to active patients
  15. 15. Patient Involvement: Pathways to Impact “I want to help, I want to help good research get done because without the volunteers they won’t progress as quickly. We need studies to report so that the findings can be adopted. But we need them to be asking the right questions, focused on our priorities in the first place. For me, public involvement has never mattered more” Voice North member and stroke patient
  16. 16. Public Involvement: Pathways to impact • Putting the public together with research and innovation is the way to ensure the NHS meets future challenges • Voice North: “Research Literate Citizens, Innovation Savvy Partners”
  17. 17. • Future design and delivery of public involvement • Setting Research Priorities and questions • Co-design of research and implementation strategies • Knowledge of service design • Delivery and Innovation Patient and public involvement in the implementation of evidence into practice
  18. 18. ‘We stand on the cusp of a revolution in the role that patients – and also communities – will play in their own health and care. Harnessing what I’ve called this renewable energy is potentially the make-it or break-it difference between the NHS being sustainable – or not.’ Simon Stevens, NHS CEO, NHS Confederation Annual Conference, June 2014
  19. 19. Contact details: Dr Lynne Corner 0191 208 1288
  20. 20. Annie Coppel Implementation Consultant, NICE Field Team 8 February 2013 PPI in guidance development – the NICE way Laura Norburn Public Involvement Adviser, Public Involvement Programme
  21. 21. What is NICE? • Set up 1999 (special health authority) to reduce variation in the availability and quality of NHS treatments and care • 2005 additional remit to support public health • April 2013: established in primary legislation (Health and Social Care Act 2012) and given responsibility for developing guidance and quality standards in social care • Accountable to DH as our sponsor but operationally independent of government
  22. 22. NICE guidance and advice NICE guidance NICE advice • NICE guidelines: o clinical o public health o social care o medicines practice • Technology Appraisals • Highly Specialised Technologies • Interventional Procedures • Medical Technologies • Diagnostics • Evidence summaries – Unlicensed or off-label medicines • Evidence summaries – New medicines • Evidence summaries – Medicines and prescribing briefings • Medtech innovation briefings • Key therapeutic topics • Local government briefings
  23. 23. • A concise set of 5-8 quality statements o designed to drive priority quality improvements within a particular area of care o offering key markers of high-quality cost-effective care o derived from best available evidence - NICE guidance and other accredited sources • Accompanied by measures that aim to improve the processes of care that link to outcomes Designed to drive quality improvement in a defined care or service area What are NICE Quality Standards?
  24. 24. Why should we involve patients in guidance development? • New evidence and information • Challenges to evidence/conventional wisdom e.g. outcomes • Qualitative context to quantitative data • Challenges to professional assumptions • The ‘so what’ question • Value to the patients in being involved • Completing the ‘triangle’
  25. 25. Public Involvement Programme (PIP) Supports the involvement of patients, service users, carers and the public across NICE work programmes Advises NICE & its collaborating centres on methods of involvement Identifies participants (organisations and individuals) Provides information, training and support to lay people who engage with NICE (as individuals or organisations) public-involvement-policy
  26. 26. How do we involve patients and public? • NICE committees and other advisory groups – individual patients, carers, users of social care services, and other members of the public with relevant experience – at least 2 ‘lay’ members on each committee – plus patient / community testimony • Organisations representing patient and public interests – consultation at key stages of NICE work • Citizens Council – members of public advise on society’s values
  27. 27. Opportunities for lay involvement • Research literature: peer reviewed and grey literature – from studies at all levels of the hierarchy of evidence – both quantitative and qualitative information • Consultation – with national organisations on the scope and draft recommendations • Direct input – lay membership of guidance development groups & committees (minimum 2, often 3, can be 6!) • Lay experts – personal testimony
  28. 28. NICE guidance: what kinds of people are involved? • People with personal experience of the topic under consideration • Relatives and unpaid carers • Members of and those who work for organisations representing the interests of patients, people who use services and their carers, and the wider community • Advocates and other relevant staff from organisations representing public interests
  29. 29. What do lay members add to NICE guidance? • Different expertise, but equal status, and should have the ability to provide a broad service user perspective (‘single issue’ people not likely to be effective in the deliberative work of a NICE committee) • Not a single or unique view – but they are the only people on the NICE committee just bringing the patient, service user, community or carer perspective • Raising issues of importance to people who use services and their carers, such as views on outcomes that matter to them and insights into information and support needs • A commitment to work within the framework of NICE processes, including the NICE equality scheme
  30. 30. Taking part in guidance development – benefit for patients • Empowers patients to be more involved in managing their condition • Empowers patients to become more involved in choices about their care and treatment • Patients have reported developing new skills and confidence which has helped them in their day-to-day life • Ensures that health interventions and treatments are relevant to patients and meet their needs
  31. 31. How patients can support putting guidance into practice • Community member – Walking and Cycling – article in London Cyclist magazine • Atrial Fibrillation Association – promoting Atrial Fibrillation guideline and decision aid on their website • JDRF, Diabetes UK & INPUT – developed a guide for young people and families about technology for type 1 diabetes based on the NICE guideline on Diabetes in Children and Young people
  32. 32. ‘I’m a patient – share your evidence with me!’ The role of shared decision making (SDM) in implementation Richard Thomson Professor of Epidemiology and Public Health Associate Dean for Patient and Public Engagement Decision Making and Organisation of Care Research Programme Institute of Health and Society Newcastle upon Tyne Medical School
  33. 33. Key Messages • There is good evidence to support SDM, so we should implement it • SDM creates evidence-based decisions, hence supports implementation.
  34. 34. What is shared decision making (SDM) ?
  35. 35. Paternalistic Informed Choice Shared Decision Making “When we want your opinion, we’ll give it to you”
  36. 36. Paternalistic Informed Choice Shared Decision Making “I’m sorry doctor, but again I have to disagree”
  37. 37. Models of clinical decision making in the consultation Paternalistic Informed Choice Shared Decision Making Patient well informed (Knowledge) Knows what’s important to them (Values elicited) Decision consistent with values SDM is an approach where clinicians and patients make decisions together using the best available evidence. (Elwyn et al. BMJ 2010)
  38. 38. 38 Sharing Evidence Clinician • Diagnosis • Disease aetiology • Prognosis • Treatment options • Outcome probabilities Patient • Experience of illness • Social circumstances • Attitude to risk • Values • Preferences
  39. 39. Cochrane Review of Patient Decision Aids(O’Connor et al 2014): Improve knowledge More accurate risk perceptions Feeling better informed and clear about values More active involvement Fewer undecided after PDA More patients achieving decisions that were informed and consistent with their values Reduced rates of: major elective invasive surgery in favour of conservative options; PSA screening; menopausal hormones Improves adherence to medication (Joosten, 2008 and more) Better outcomes in supported self-management (SSM)/long term care “No decisions in the face of avoidable ignorance” Reduce unwarranted variation SDM – why should we do it?
  40. 40. Hoffmann, T. C., et al. (2014). "The connection between evidence-based medicine and shared decision making." JAMA 312(13): 1295-1296.
  41. 41. Conclusion Medicine cannot, and should not, be practiced without up-to-date evidence. Nor can medicine be practiced without knowing and respecting the informed preferences of patients. Clinicians, researchers, teachers and patients need to be aware of and facilitate the interdependent relationship of these approaches. Evidence- based medicine needs SDM, and SDM needs evidence-based medicine. Patients need both. Hoffmann, T. C., et al. (2014). "The connection between evidence-based medicine and shared decision making." JAMA 312(13): 1295-1296.
  42. 42. Resources • MAGIC programme (SDM Implementation Programme funded by the Health Foundation) – • Health Foundation patient-centred care resource centre – • Decision aids (links to several different sources)
  43. 43. Thank you: questions?
  44. 44. Best practice for whom? How can we integrate evidence-based guidance and shared decision-making? Victoria Thomas, Head of Public Involvement
  45. 45. Populations and individuals • Nature of evidence-based medicine to deal in averages and populations, and not individuals • Trial populations often unlike ‘real life’ populations • Evidence-based good practice recommendations – NICE’s core business • Likely to be suitable for 80% of people, 80% of the time • What about the other 20% of people, 20% of the time?
  46. 46. Implementation tensions Guidelines make recs about ‘best’ clinical outcomes Patients want the care the achieves the best outcome for them Clinicians want to deliver best care for their patients • These three factors may be at odds with one another • How can you implement guidance if you don’t think the recommendations are suitable?
  47. 47. Resolving these tensions in guidance • Clarity about a definition of preference sensitive care, and where decision support is needed • Identify and highlight preference sensitive decision points – part of guidance development and evidence reviews • Be explicit about uncertainty • Provide options within a cost-effective framework
  48. 48. What are the options for guidance developers? Describe explicit options for treatment Make additional recommendations for different population groups Tabulate risk and benefit information for different treatment options Make recommendations about the use of decision support tools Make recommendations about the need to develop decision support tools
  49. 49. The role of NICE in supporting SDM • Facilitation • convening the Shared Decision Making Collaborative • Development • (ad hoc) producer of patient decision support tools • Methodology • identifying ways that guidance developers can highlight preference sensitive decisions
  50. 50. NICE’s experience of decision aids so far • Atrial Fibrillation PDA – medicines to help reduce your risk of a stroke – what are the options?: -atrial-fibrillation-update-patient-decision-aid • Lipid modification PDA – taking a statin to reduce the risk of coronary heart disease and stroke: -lipid-modification-update-patient-decision-aid2 • Dyspepsia/GORD – option grid to help people make decisions about long term heartburn treatment: • -dyspepsiagord-option-grid-to-help-people-make- decisions-about-long-term-heartburn-treatment
  51. 51. The potential future role for NICE • Host o repository of patient decision aids and other decision support tools • Accreditor o determine a minimum quality standard for the development of PDAs • Signposter o use of evidence by third party developers • Leader o Guiding the wider H&SC system towards a culture change
  52. 52. The role of others? • Huge issue of culture change – need to encourage the sharing of uncertainty and the willingness to relinquish power • Role of education & training – ‘communication skills’ are not just about persuasion • Local leadership – role of individual boards, and the need for shared learning of good practice • Research – we know a lot about shared decision making but we need to know more
  53. 53. From the Collaborative’s consensus statement • Culture change must trump all • Shared decision making is no more patient decision aids than person centred care is personal budgets • From the SDM Collaborative’s consensus statement “ All NHS bodies and patient organisations should actively support a culture of shared decision making so that it becomes a routine expectation of patient and clinicians.”
  54. 54. Contact Victoria Thomas;
  55. 55. Workshop I : Sharing experience of patient/ public role in implementation Scribe on each table to capture on flipchart paper (provided). • Examples of effective PPI you have been involved in/aware of. What achieved? • Why successful? (facilitators/barriers addressed) • Lessons learned Feedback • One key example • Two lessons learned
  56. 56. Exploring the role for PPI in implementation Dr Sophie Staniszewska Royal College of Nursing Research Institute Warwick Medical School University of Warwick
  57. 57. Overview  PPI: An outline  Implementation: an overview  Role of PPI in implementation of evidence  Some conceptual thoughts!  An example: NICE Patient Experience Guidance  What does this mean for you and your action plan?
  58. 58. PPI  Active collaborative involvement of patients/public in research  Important progress made over last 10-20 years  Significant policy support  Significant organisational architecture developed  But, poor conceptualisation, theorisation, limited qualitative capture of impact and no robust quantitative measurement  An evolving evidence base, but poor reporting
  59. 59. Implementation  Implementation: putting evidence into practice to enhance the quality or effectiveness of care  A big challenge in healthcare  CLAHRC vision  Range of theoretical models eg. PAHRIS framework  Evidence, context, facilitation  Absorptive capacity: ability of an organisation to find and use new knowledge
  60. 60. Mapping the territory  PPI in research  PPI in implementation research  PPI in implementation of research  Which one are we interested in?  Hopefully PPI in implementation
  61. 61. Implementation and PPI  Where do PPI and implementation meet?  Territory mapping of concepts and theories (Lee Gunn)  Limited clarity in literature  PPI in implementation: The final frontier?  Few case studies that are described as examples of PPI in implementation
  62. 62. What do we mean?  Taking the INVOLVE definition of research and applying it to implementation  Patient and public involvement in implementation of evidence carried out ‘with’ or ‘by’ members of the public rather than ‘to’ or ‘about’ or ‘for’ them  What could this look like?
  63. 63. Roles: Expert by experience  Implementing research evidence into your own health care practice as a patient  Research engagement  Reading research studies  Active co-producer of care  Leader of your care  Shared decision-making
  64. 64. Role: Advocate  Speaking on behalf of another person  Advocate collecting all relevant evidence and applying it to the person’s context  Drawing from a range of experience and expertise  Campaigning for implementation of evidence?
  65. 65. Role: Consumer  Identifying relevant studies or systematic reviews or models of care  Critique eg. Extent of PPI in studies  Applying them to your own context  Eg. POPPY model of family centred care  Patient groups using consumerist approach, information, access, redress, safety
  66. 66. Role: Citizen  A wider role  Focus may be more general and less disease focused  A facilitator of evidence  More strategic  Involvement in CCG  A campaigner for PPI in implementation
  67. 67. Role of PPI in implementation?  Limited discussion of role of PPI and implementation in literature  Limited conceptual clarity  But enormous potential  Patients and the public as the greatest untapped resource? (Kings Fund)
  68. 68. The process of implementation  How do we move evidence into practice?  New studies with new evidence  Changes in protocols  Changes in guidance  Service re-design  Role for patient/public in these forms of implementation  Patients as facilitators of evidence into practice?
  69. 69. Developing conceptual thinking  Range of frameworks concerned with different aspects of implementation  Absorptive capacity (Zahra and George 2002).  Original definition : Absorptive capacity, the ability of a firm to recognize the value of new, external information, assimilate it, and apply it to commercial ends is critical to its innovative capabilities
  70. 70. Dimensions of ACAP  Identifying and accessing relevant knowledge through acquisition processes  Analysing and interpreting this information through assimilation  Integrating existing knowledge with the newly assimilated knowledge through transformation  Refining and developing existing organisational routines and behaviours through exploitation of the transformed knowledge
  71. 71. Patient role in ACAP  Identifying relevant evidence eg. Paper known to be important to a community  Analysing and interpreting evidence through a consideration of its relevance or appropriateness eg. Correct outcomes?  Integration evidence with existing knowledge: a consideration of how new knowledge adds to thinking  Contributing to considering what this means for the service
  72. 72. NICE Patient Experience Guidance  NICE Patient Experience Guidance (2012)  Evidence update 2014  PPI in development of NICE Guidance  Guidance to NHS on how to ensure a good patient experience  Drew on evidence base of patient experience  Well received but challenges around implementation
  73. 73. Implementing NICE Patient experience Guidance  NICE Guidance complex  Wide range of recommendations  Potential to transform experience of care  Who has responsibility for implementation?  Health care organisation, CCG, Patient, Public?  Maybe there is a gap?
  74. 74. Implementing NICE Patient Experience Guidance  Individual level: Take it with you, refer to it, use as standard, discuss with hcp’s, look for evidence of it, feedback.  Consumer level: Work with your local Healthwatch to support implementation  Advocate level: Support others  Citizen: Influence as different levels, CCG commissioning
  75. 75. Implementing NICE Patient Experience Guidance  Identify new experiences evidence that adds to guideline eg. Evidence update  Analyse and interpret new evidence  Integrate new evidence with existing knowledge  Consider implications for existing organisational routines and behaviours
  76. 76. Patient/public role in implementing NICE guidance  Spread the power and share implementation  Consider the potential for patients and public to have a more active role in implementation of guidance  From passive to active  Co-production of implementation strategy
  77. 77. What does this mean for your action plan?  Co-produce your implementation plan with patients/public/community, sharing power  Acknowledge complexity of implementation  Recognise implementation takes place outside of the health system  Recognise and define potential roles for patients/public with them  Recognise and define potential levels of activity for patients/public with them
  78. 78. What could public involvement in implementation look like in 10 years?  Public involvement in implementation of guidance is normal and accepted practice  Agreed framework and methods  Enhanced evidence base with better consensus on value of public involvement in implementation  Greater public awareness of the role of patients and public in research implementation  Global leadership in public involvement in implementation
  79. 79. Contact   Royal College of Nursing Research Institute, Warwick Medical School, University of Warwick
  80. 80. The Health Foundation Inspiring Improvement Nick Lewis-Barned, RCP Clinical Fellow for SDM and SSM Year of Care Partnerships ‘Hands off! It’s my decision’ - clinical partnership that change care AHSN / NEQOS Meeting Newcastle 21st October 2015
  81. 81. The Health Foundation Inspiring Improvement Starting with people What’s it like to be … Simesha?
  82. 82. The Health Foundation Inspiring Improvement • 65 years old • Type 2 diabetes, COPD, osteo- arthritis, high BP, BMI 35 kg/m2 • Currently taking Gliclazide 160mg bd, Metfomin 1g bd, Simvastatin 80mg, Aspirin 75mg, Ramipril 5mg, Bendroflumethiazide 2.5mg, Lansoprazole 15mg, Naproxen 500mg bd, Paracetamol prn, Flixotide and Ventolin inhalers • HbA1c 78 mmol/mol; chol 5.6; EGFR 68, FEV1 64% Simesha
  83. 83. The Health Foundation Inspiring Improvement Outcomes To be able to: • Identify the problem • Appreciate what partnership working is about for health decisions and plans • Recognise the benefits • Know where to go for more information
  84. 84. The Health Foundation Inspiring Improvement What’s the problem?
  85. 85. The Health Foundation Inspiring Improvement Feel satisfied with care? Respect and value HCPs? Feel listened to/involved? Do what they are told? Take tablets as prescribed? Have outcomes as good as could be?       Have relevant information? / Do our patients…?
  86. 86. The Health Foundation Inspiring Improvement Dilemma • ‘Diabetes’ (or COPD) is complex and dangerous / deadly • There are effective treatments to reduce risk • Only a minority take treatments Why?
  87. 87. The Health Foundation Inspiring Improvement How are we doing? …or… ‘…but we do that already!’
  88. 88. The Health Foundation Inspiring Improvement How are we doing in general? % Aus Can Fr Ger Neth NZ UK US Regular doctor always tells you about treatment options and involves you in decisions 58 56 43 56 63 62 51 53 Your clinician gives you a written plan to manage care at home 42 47 34 31 35 43 35 66 Commonwealth Fund International Health Policy Survey of Sicker Adults 2005&2008
  89. 89. The Health Foundation Inspiring Improvement … in hospital? Want more involvement in treatment decisions Source: NHS inpatient surveys 0 10 20 30 40 50 60 70 80 90 100 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 46 46 47 47 48 49 48 48 48 48 45 44 %
  90. 90. The Health Foundation Inspiring Improvement Listening to you Q21. Last time you saw or spoke to a GP from your surgery , how good was that GP at: Listening to you?
  91. 91. The Health Foundation Inspiring Improvement Involving you in decisions Q21. Last time you saw or spoke to a GP from your GP surgery , how good was that GP at: Involving you in decisions about your care
  92. 92. The Health Foundation Inspiring Improvement Confidence to manage health Q33. How confident are you that you can manage your own health?
  93. 93. The Health Foundation Inspiring Improvement Enough Support Q32. In the last 6 months, have you had enough support from local services or organisations to help you to manage your long-term health condition(s)? Please think about all services and organisations not just health services
  94. 94. The Health Foundation Inspiring Improvement … so what’s this partnership about?
  95. 95. The Health Foundation Inspiring Improvement ‘Insanity: Doing the same thing over and over again and expecting different results’ Rita Mae Brown ‘We cannot solve our problems with the same thinking we used when we created them’ Albert Einstein
  96. 96. Long Term Conditions are different Hours with healthcare professional = 4 hours in a year Self-management = 8756 hours in a year
  97. 97. The Wagner Chronic Care Model Community Health care system Resources and policies Health care organisation Self management support Delivery system design Decision support Clinical information systems Informed ‘activated’ patient Prepared proactive health team Improved outcomes Productive interactions Thinking differently for Long Term Conditions
  98. 98. The Health Foundation Inspiring Improvement … the decision / planning dilemma Poor decision quality Patients: unaware of treatment or management options and outcomes Clinicians: unaware of patients’ circumstances and preferences
  99. 99. The Health Foundation Inspiring Improvement … and the option Best decision quality Patients: Bringing experience, personal values, knowledge and preferences Clinicians: Bringing best evidence presented clearly and skillfully
  100. 100. The Health Foundation Inspiring Improvement ‘ After all, when you seek advice from someone it's certainly not because you want them to give it. You just want them to be there while you talk to yourself’ Sir Terry Pratchett
  101. 101. The Health Foundation Inspiring Improvement What does it mean for Simesha?
  102. 102. The Health Foundation Inspiring Improvement Learning from Year of Care ‘The key to good outcomes’ is Engaged empowered patient Organised proactive system Productive interactions Based on: NSF for Diabetes (UK) Wagner Chronic Care Model (USA)
  103. 103. The Health Foundation Inspiring Improvement The key aims of the Year of Care • It is firstly about making routine consultations between clinicians and people with long-term conditions truly collaborative, through care- planning • and then about ensuring that the local services people need to support this are identified and available, through commissioning Having better Conversations
  104. 104. Care planning – it’s a verb! ‘A care plan is at the heart of a partnership approach to care and a central part of effective care management. The process of agreeing a care plan offers people active involvement in deciding, agreeing and owning how their condition is to be managed’ Partnership working
  105. 105. The Health Foundation Inspiring Improvement
  106. 106.  Year of Care Engaged, informedpatient HCPcommittedto partnershipworking Organisational processes Commissioning - The foundation Person centred consultation
  107. 107. The Health Foundation Inspiring Improvement Engaged, informedpatient HCPcommittedto partnershipworking Organisational processes Commissioning - The foundation Collaborative care planning consultation Send test results beforehand Contact numbers and safety netting Consultation skills / attitudes Senior buy-in & local champions to support & role model Integrated, multi-disciplinary team & expertise Information/ Structured education ‘Prepared’ for consultation Emotional & psychological support Quality assure and measure Procured time for consultations, training, & IT Identify and fulfil needs IT: clinical record of care planning © Year of Care Partnerships Develop non- traditional support provision
  108. 108. The Health Foundation Inspiring Improvement …and does it work?
  109. 109. Clinical care…….. Improving too! Tower Hamlets 92% of registered population (Type 2 diabetes) taking part in care planning Patient perceived ‘involvement in care’ rose from 52-82% 72% received all 9 processes in National Diabetes Audit: Best in England (Average 49%)
  110. 110. Impact - Biomedical
  111. 111. Eaton et al. BMJ 2015;350:h181
  112. 112. The Health Foundation Inspiring Improvement For more information /shared-decision-making
  113. 113. The role of patient & public groups in implementation Trudie Lobban MBE FRCP Founder & CEO, AF Association
  114. 114. Atrial Fibrillation (AF) is the most common heart rhythm disturbance encountered by doctors. It occurs when chaotic electrical activity develops in the upper chambers or atria, and completely takes over from the sinus node. As a result, the atria no longer beat in an organised way, and pump less efficiently. The AV node will stop some of these very rapid impulses from travelling to the ventricles, but the ventricles will still beat irregularly and possibly rapidly. What is Atrial Fibrillation (AF)?
  115. 115. • 150,000 strokes per year in the UK • 410 per day • 17 per hour • Within the next two hours: – 30 patients with AF will have suffered a AF-related stroke – 24 would have been known to be at high risk of AF-related stroke – 18 should have been on an anticoagulant – 9 will go home – 15 will end up in residential care – 6 will die.... Today, during this meeting…
  116. 116. AF Association focuses on raising awareness of atrial fibrillation (AF) by providing support, information and education for patients and medical professionals We each have a 1 in 4 lifetime chance of developingAF By 2050, 1 in 2 of us will have AF If we don’t develop it, we will most certainly care for, or know, someone who has AF Association
  117. 117. Atrial Fibrillation Association provides support, information and guidance to anyone affected by atrial fibrillation (AF). AF Assoc works in partnership with patients and clinical experts to advance the education of both the medical profession and the general public on the risks, detection and treatment of AF. Atrial Fibrillation Association (AF Association)
  118. 118. “The arrhythmia is now with me 24 hrs per day, and while I am not unduly ‘ill’, it is ruining my life” A - Alone F - Frustrated  What is needed?  Timely & accurate diagnosis  Reliable & helpful information  Easy access to appropriate treatment Yet, despite greater devastation of AF-related stroke, wider choice in therapy and emphasis on appropriate management from a policy perspective – diagnosis and management of AF patients still remains poor A common message
  119. 119. Relief and hope Diagnosis, validation, control and hope Fear and confusion Pre diagnosis, long and anxious search for explanation of symptoms Despondency Uninformed and unsupported, dismissal of symptoms, no grasp of what future might hold Turmoil Emotional distress, fear of stroke, loss of hope, unpredictable and invasive symptoms McCabe PJ et al. J Cardiovasc Nurs 2011; Epub ahead of print Typical AF patient journey
  120. 120. Accurate and comprehensive information Advice about all options available Access to treatments not denied by local directive More streamlined care More choice Services that fit around the patient and not the patient fitting around the service Factors affecting patient experience
  121. 121. Arrhythmia Alliance organises an annual awareness week campaign which provides everyone with the opportunity raise awareness and promote better understanding of heart rhythm disorders • KnowYour Pulse campaign was the cornerstone of Heart RhythmWeek • Your Heart inYour Hands, promoting the importance of patient empowerment formed the theme of Heart RhythmWeek Heart Rhythm Week
  122. 122. Risk factors for AF AF-related stroke: This occurs because when a person is in AF, the atria (the top chambers of the heart) are fibrillating and not beating in a co-ordinated way.The lack of sufficient contraction means that the blood in parts of the atria becomes stagnant and can form clots. These clots can break off and travel anywhere in the body, but most worryingly, they can travel to the brain and cause a stroke.
  123. 123. • 2000 – NSF published on cardiology with virtually no mention of arrhythmias • A-A began sustained call for change • 2003 - Lobbying and letter writing began • 2004 creation of the A-A during inaugural Arrhythmia Awareness Week • Response from lobbying came 1 January 2004 • “Issue of arrhythmia and its management” under consideration • 2004 Health minister announces need for arrhythmia content and invitesA-A to assist drafting NSF Chapter 8
  124. 124. “The e e st thin s in li e th n de th” (Eileen, AF patient, 2013) “I nd t I h d AF te extensive tests p st st e ” (Chris, AF patient, 29, 2013) “One GP dmitted me t h spit l nd the the dismissed me ith spi in I lishly believed the sec nd GP’s pini n nd t ied t et n t my n m l life, but after time, once again, the dizzy spells returned. I decided to go through my private medical scheme at work and was referred to a senior cardiologist. He confirmed AF and put me on an oral anticoagulant and amiodarone ” (J s n, 41, AF p tient 2013) AF Experiences
  125. 125. At 40, we all have a one in four chance of developing AF. Having AF means that you are five times more likely to suffer from a stroke than someone without AF. Individual risk of stroke, however, will be determined by several contributory factors. If you’ve been diagnosed with AF please use this calculator to work out a personal estimate of your stroke risk: Protect AF
  126. 126. • AF Association's site The Heart of AF, is a central resource primarily for healthcare professionals to access the latest research, source information, share pathways/protocols and to be kept updated on established, new or innovative treatments and guidelines for atrial fibrillation (AF). • The Heart of AF
  127. 127. The AF infographic
  128. 128. Launched 2011 to champion awareness of AF from the heart ofWestminster Aims to improve treatment and diagnosis of AF and help prevent stroke Chaired by Barry Sheerman MP and Deputy Glyn Davies MP both impacted by AF • Raises awareness of AF to Parliamentarians and key decision makers • Brings together clinicians, commissioners and patients to discuss high quality AF care • Acts as a thought leader, publishing research like the Healthcare pioneers report • APPGs represent an effective, tried and reliable route to engagement and influence with healthcare policy makers • An effective APPG enables focus, generates credibility and provides cohesion and consistency for all efforts to pull policy levers The All-Party Parliamentary Group on AF (APPG AF)
  129. 129. The National Institute for Health and Care Excellence (NICE) have issued a new atrial fibrillation quality standard, NICE quality standard 93. The quality standard covers the treatment and management of atrial fibrillation (including paroxysmal, persistent and permanent atrial fibrillation, and atrial flutter) in adults (18 years and older). It will cover adults with both valvular and non-valvular atrial fibrillation. NICE Atrial Fibrillation Quality Standard
  130. 130. Who is involved? • MPs • Healthcare professionals • AF patients
  131. 131. Reports • The AF Report was launched in parliament. It discusses the importance of guidelines, the current challenges and the importance of preventing AF-related stroke • Grasp the Initiative Report found 8,000 AF-related strokes could be prevented in England every year.This could save the NHS £96m • Healthcare Pioneers booklet, which aims to contribute towards wider dissemination of successful local practice. • AF Association Patient Charter – for patients, by patients • Future of Anticoagulation Report An assessment of today’s challenges with recommendations for the future. • The Route map for Change & the European Atlas on the Prevention of AF-Related Stroke launch of a landmark report to raise awareness among policy makers of the growing burden posed by AF-related strokes.
  132. 132. • AF Association works closely with medical professionals, Department of Health, government, NHSTrusts, strategic health authorities, patients, carers, patient support group members and allied groups. • All information resources published by AF Association have been approved by medical advisory committee and endorsed by the Department of Health.The booklets currently available include titles on: Cardioversion of AF, DrugTreatments for AF, BloodThinning for AF, two Checklists and anAF Patient Information booklet. • AF Association is fortunate to have ProfA JohnCamm, Prof Richard Schilling, Dr Matt Faye and Mrs Jayne Mudd asTrustees andBaroness Smith of Gilmorehill as Patron. Working with HCP to make a difference
  133. 133. More information For more information, please read/download our patient information booklets:
  134. 134. Being diagnosed with AF, whether you or a loved one, can come as a big shock and learning how to cope with the diagnosis and symptoms can be difficult. However, there are many sources of information and support that you can draw on. • AF Association's website: has a wealth of information regarding AF as well as many publications to view and download • AF Association helpline: please call 01789 867502 we are more than happy to try to answer any queries or concerns you may have. • Email advice: please email with your query and we will respond as soon as we can. • HealthUnlocked: is an online forum with a growing community of people who have AF or care for someone with AF. It is a wonderful source of support and advice from a patient perspective. • Your clinicians: if you have any concerns regarding your AF or treatment this should always be discussed with your GP or consultant - please do not be afraid to ask. Many hospitals will also have Arrhythmia Nurses whom you can speak to. Support for AF
  135. 135. In conclusion Together we can make a difference!  Detect  Protect  Correct
  136. 136. Implementing SDM – from fancy extra to core behaviour Dave Tomson FRCGP GP, Freelance consultant and NT CCG lead on patient centred care
  137. 137. Summary • Implementing SDM in clinical practice is a way of getting evidenced based care into practice • Implementation requires several evidence based intervention stands • Implementation is not easy but we are learning about some of the more successful ways of making it happen • What can YOU do to make SDM a core activity?
  138. 138. Core ingredients for successful SDM You need • A skilled (health literate) conversation (patients/carers/ health worker) which allows informed preferences to emerge • Good quality, understandable evidence • Time and (re)organisation at multiple levels of organisations • An implementation strategy
  139. 139. Why is not happening every where? Multiple barriers - “We’re doing it already” - “It’s too difficult” (time constraints) - Accessible knowledge - Skills & Experience - Decision support for patients / professionals - Fit into clinical systems and pathways Lack of implementation strategy Multiple barriers in organisations and contexts • Power imbalance and lack of agency, permission • Health literacy gaps – Accessing information – Understanding information – Appraising information – Correct amount of information – Confidence to use the information – Navigating the health system – Being supported in using the information • Activation/ engagement
  140. 140. Key features of the MAGIC programme
  141. 141. Key elements • engagement of multidisciplinary clinical teams through Leadership, clinical champions, trained facilitators, and embedding change into clinical pathways and practice • Awareness, attitude, skills development • drawing upon what we know works in change management and professional behaviour change, • both decision-specific and generic decision aids • rapid action learning and feedback using measurement for change • patient and public engagement • Attention to commissioning, sustainability, context
  142. 142. Leadership, clinical champions, trained facilitators, and embedding change into clinical pathways and practice – Must have leadership and embedding into organisational priorities if you are to get whole systems change – Local champions at various levels inc. senior staff – Aligning with existing priorities, local and national – Non medical specialists are key but can be undermined – ‘Instead’ of rather than ‘as well as’ – Incentives and learning sets can both work
  143. 143. Awareness, attitude, skills development • Attitudes are all – for some this is a fundamental challenge to their way of operating as clinicians • Build on skills clinicians already have • You need some time – 2 hours is a minimum • Attitudinal work and micros skills work are critical • Practice with and without tools • Training is highly rated but insufficient dosage for most clinicians without follow up • Continual challenge to maximise dosage potency
  144. 144. Both decision-specific and generic decision aids KEY LEARNING: – Brief tools easier to develop and less resistance to implementation but You need skills to use tools. – You can do excellent SDM without tools
  145. 145. Measurement & rapid feedback Measurement and Patient experience data in particular are challenges • Validity, reliability, social acceptability bias • Role of decision quality measures • Who collects it and how to feed it back? • Act of measuring is an intervention • Use your local system’s model of QI • Driver diagrams, PDSA cycles, patient feedback, performance feedback all helpful at times • Teams need to own and be interested
  146. 146. Patient and public involvement • Role of patient narratives/stories • Role to challenge • “Patient activation”: PPI role • Patient materials design and content • Ask 3 questions –well received and adaptable • How to better support activated patients? • Challenge of PPI in clinical teams • Wider bi-directional PPI – range of stakeholders – External Advisory Group (Newcastle)
  147. 147. Ask 3 Questions A6 flyer for use in appointment letters, waiting areas, consulting rooms. Posters for use in waiting areas and consulting rooms. Short film to encourage patient Involvement: ‘So Just Ask’ Acknowledgement to Shepherd et al, School of Public Health, University of Sydney
  148. 148. Patients as co-producers • Work with Mark and Sally at TEWV – Designing education – Co facilitating education – The Recovery college and education for patients • Health advocates, SDM facilitators • The new thinking on Health Literacy – Richard Osborne and others is exciting
  149. 149. Attention to commissioning, sustainability, context • Not sure how many answers we have got here yet! • South Tyneside successfully incorporated into core business, but can easily slide off top table • Huge number of changes and organisations in very different places –We made need different languages/ guises –Ally SDM with other initiatives – i.e Recovery –Many tensions
  150. 150. • Discussion and questions
  151. 151. Resources • South London CSU • The Health Foundation and • Person Centred Care decision-making/implementing-shared-decision-making • AQuA Advancing Quality Alliance 14.pdf
  152. 152. Workshop II: Action planning - What can you do?/ What can your organisation do? Drawing upon today’s discussions/presentations…. • 40 minutes - General discussion. What could be done, in terms of patient/public role, to support better implementation in (your table topic/area) • 20 minutes - What can I do as next steps? Write your pledges on postcards. If you are working as a pre-defined team on your table, say what you will specifically do to contribute to the team’s plan. If not, think about what you might do in the next day, week, month in your role/organisation.
  153. 153. NB. Be creative! This may include actions to: (1) learn/explore more e.g. “I will find out more about…..”; “I will review….”, but if so, be specific or, (2) tasks that will make progress in your personal role or your team/organisation e.g. “I will take the lead for X on…..”; “I will engage my patients more in decision making…”; “I will use a patient decision aid….”; “I will talk to my practice PPI group to see how they can help…”; “I will discuss the PPI role in implementation at the next board meeting….”).
  154. 154. Close