Shared Decision Making in Practice: An Overview of MAGIC Richard Thomson On behalf of MAGIC Cardiff and Newcastle

Newcastle Richard Thomson Cardiff Glyn Elwyn/Maureen Fallon Acknowledgements: The Health Foundation, Cardiff and Vale Health Board, Newcastle upon Tyne Hospitals NHS Foundation Trust, staff and patients involved across both sites.

What is shared decision making (SDM) ?

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)

Examples of preference – sensitive decisions Breast conserving therapy or mastectomy for early breast cancer Repeat c-section or trial of labour after previous c-section Watchful waiting or surgery for benign prostatic hypertrophy Statins or diet and exercise to reduce CVD risk Diet and weight loss or medication in diabetes

“Shall I have a knee replacement?” “Shall I have a prostate operation?” “Shall I take a statin tablet for the rest of my life?” “Should I use insulin or an alternative?” “I would like to lose weight” “I would like to eat/smoke/drink less” Spectrum of SDM to SSM TOOLS SKILLS

Cochrane Review of Patient Decision Aids(O’Connor et al 2011): 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) Better outcomes in long term care SDM – evidence

Are patients involved?

So why aren’t we doing it? 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

Key features of the MAGIC programme

Key elements: Phase 1 effective engagement of multidisciplinary clinical teams through clinical champions, skills development, 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, whilst testing some additional innovative elements used decision aid tools both decision-specific and generic tools rapid action learning and feedback (implementation monitoring) patient and public engagement

MAGIC – Phase II  Moving implementation from pilot departments and general practices to hospitals and health communities: embedding and sustainability  Leadership and organisational engagement, including working with new commissioning structures (Newcastle) and Welsh Govt (Cardiff)  Expanding and accelerating clinical engagement and impact, by testing learning from Phase 1  Enhanced patient and public involvement, including an emphasis on patient activation and the wider community.  More efficient ways of delivering education and training  Quality metrics: demonstrating value to commissioners and primary and secondary care organisations. 12

Key learning from the MAGIC programme: headlines. “When we want your opinion, we’ll give it to you”

Evidence-based decision support Timely and appropriate access for clinicians and patients Needs facilitation In consultation or outside? Value of brief in-consultation tools (Option Grids and Brief Decision Aids) Fit to clinical pathways Adapt pathway or tools? (VBAC, BPH)

Brief Decision Aids/Option Grids Heavy Menstrual Bleeding (Heavy Periods) Management Options [1] A Brief Decision Aid There are four options for the management of heavy menstrual bleeding: Watchful waiting - seeing how things go with no active treatment. Intrauterine system (IUS) – a hormonal device placed in the womb that lasts five years. Medication - tablets taken before and during periods, the combined oral contraceptive pill, or progestogens either as tablets or a 3 monthly injection. Surgery - endometrial ablation or hysterectomy. These are hospital procedures that are usually considered only if other options have not worked well or have been unacceptable. [1] Only for use once other causes of HMB such as fibroids or polyps have been excluded

Benefits and Risks of Intrauterine System (IUS) Treatment option BenefitsRisks or Consequences Intrauterine system (IUS) Involves a minor procedure done in the GP practice/sexual health clinic. Majority of women say that the fitting is similar to moderate period discomfort Blood loss is normally reduced by about 90% About 25 in every 100 women will have no periods at 1 year It lasts five years but can be removed at any stage. It is more often considered if the treatment is wanted for longer than a year. It usually reduces period pain. It is an effective contraceptive.(see separate leaflet) Bleeding can become more unpredictable especially in the first 3-6 months. This usually, but not always, settles down At the time of fitting, an IUS may rarely be placed through the wall of the uterus (about 1 in 1000 fittings). IUS falls out 5 times in every 100 times it is put in. (this is usually obvious at the time) Treatment option BenefitsRisks or Consequences Watchful waiting - no active treatment No side effects or hospital treatment – can choose another option at any time. Your periods will eventually disappear – average age of menopause is 51. It is already having an impact on your life and wellbeing. It is possible that periods will get worse running up to the menopause Menorrhagia BDA

Lumpectomy with Radiotherapy Mastectomy Which surgery is best for long term survival? There is no difference between surgery options. What are the chances of cancer coming back? Breast cancer will come back in the breast in about 10 in 100 women in the 10 years after a lumpectomy. Breast cancer will come back in the area of the scar in about 5 in 100 women in the 10 years after a mastectomy. What is removed? The cancer lump is removed with a margin of tissue. The whole breast is removed. Will I need more than one operation Possibly, if cancer cells remain in the breast after the lumpectomy. This can occur in up to 5 in 100 women. No, unless you choose breast reconstruction. How long will it take to recover? Most women are home 24 hours after surgery Most women spend a few nights in hospital. Will I need radiotherapy? Yes, for up to 6 weeks after surgery. Unlikely, radiotherapy is not routine after mastectomy. Will I need to have my lymph glands removed? Some or all of the lymph glands in the armpit are usually removed. Will I need chemotherapy? Yes, you may be offered chemotherapy as well, usually given after surgery and before radiotherapy. Will I lose my hair?Hair loss is common after chemotherapy. Option Grid

Patients’ knowledge post diagnostic consultation Measuring impact of change in clinical practice (Option Grid)

Clinical skills development Cornerstone of implementation Attitudes and awareness critical Interactive, advanced skills-based training is core Eye opening and valued – moving from “we do this already” to “I think we do this, but we could do it better” What is important to patient (values) is key learning Challenge of getting senior clinicians to attend Role of the model of the consultation Attitudes and skills trump tools Needs resourcing - MAGIC-Lite model: possible to deliver more efficiently

SDM model for clinical practice 20

Clinical team engagement Leadership and champions Team of champions (including non-clinical) Learning sets (in primary care) Importance of medical leadership & role of nurse specialists Different facilitators for different teams Keeping SDM on the agenda of the team Patient experience – decision quality Support new developments (place of birth) Support for model of delivery (MDT in head and neck cancer) Practice payments Peer pressure/CCG and national initiatives (1000 lives)

Measurement & rapid feedback Action learning model Regular meetings to share good practice and experiences Measurement for monitoring, research or QI? History and experience Local skills Driver diagrams and PDSA in Cardiff Role of rapid testing locally and ownership Patient experience data a challenge Validity, reliability, social acceptability bias Role of decision quality measures

Readiness to decide, using DelibeRATE (Feb 2011 – Jan 2012) Measuring patients’ readiness to decide

Choice of treatment (Feb 2011 – Jan 2012) Measuring patients’ choice of treatment

Quality Improvement & MAGIC Cardiff used the model for improvement (known as QI) as the basis for implementing SDM. This methodology is adopted on a pan-Wales basis. The PDSA (Plan, Do, Study, Act) cycle is ideally suited to SDM implementation as it allows you to test a change in the work setting by planning it, trying it, observing the results and acting on what is learned e.g DQM changes in Breast; Surescore use in Mental Health

Patient and public involvement Role of patient narratives/stories Role to challenge “Patient activation”: PPI role Patient materials design and content – MAGIC or SDM 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)

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

Commissioning Challenging in rapidly changing systems and new organisations alongside efficiency savings!! MAGIC Lite: possible to deliver training to large numbers quickly Link to other priorities – e.g. referral management, long term conditions

Key learning: Summary SDM is so much more than tools; more to do with skills and new ways of consulting (aided by decision support) Complex PDAs have a role, but also need simpler in-consultation support (Option Grids/Brief Decision Aids). Need to embed within clinical pathways (or adapt) and show value to clinicians Need for wider PPI at all levels

Key learning: Summary Important emerging role of patient activation (provided service is ready to respond) Measurement of patient experience hard at local level, but local measures likely to be of value if they stimulate change and inform clinical practice (e.g. DQM) Link to QI/service improvement – local context

Wider policy and systems issues SDM needs to be incentivised within the system (e.g. key metrics/performance management; national/ professional body support; commissioner buy in; board buy in) Tensions exist –Rapid progress through cancer care pathways –QOF ( e.g. for hypertension treatment targets) –Tendering processes within the English market –Criterion based models of referral management and NICE guidance may create tensions with SDM

Wider policy and systems issues Need for national coordination around education and training Coordination nationally between patient experience/SDM and LTC/SSM Access to resources at the time needed – e.g. within info systems Use of routine data for monitoring and QI Research needed (e.g. NIHR) to develop valid and reliable measurement of SDM

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