Improving Outcomes by Helping People Take Control The theory and practice of Co-creating Health

Care pathways: providing specific interventions Care planning: A system of regular scheduled appointments, providing proactive structured support NB : People may also be accessing a wide variety of other support e.g. from within their communities Life with a long term condition: the person’s perspective Interactions with the service: planned or unplanned Problem solving: Time limited consultation/s providing motivational support Why support self-management?

3 “ Self management support can be viewed in two ways: as a portfolio of techniques and tools that help patients choose healthy behaviours; and a fundamental transformation of the patient- caregiver relationship into a collaborative partnership.” Bodenheimer T, MacGregor K, Shafiri C (2005). Helping Patients Manage Their Chronic Conditions. California: California Healthcare Foundation. What is supported self-management?

4 ©The Health Foundation Co-creating Health Achieve measurable improvements in the quality of life of people living with long term conditions and improve their experience of health services by embedding self management support within mainstream health services.

The problems: Lack of care coordination Lack of active follow-up Patients inadequately trained to manage their illnesses The Chronic Care Model Developed by the MacColl Institute ACP-ASIM Journals and Books 5 ‘Overcoming these deficiencies will require nothing less than a transformation of health care, from a system that is essentially reactive - responding mainly when a person is sick - to one that is proactive and focused on keeping a person as healthy as possible.’

The Chronic Care Model Developed by the MacColl Institute ACP-ASIM Journals and Books 6 ‘Overcoming these deficiencies will require nothing less than a transformation of health care, from a system that is essentially reactive - responding mainly when a person is sick - to one that is proactive and focused on keeping a person as healthy as possible.’ Supporting people on their journey of activation Understanding have role; confident and capable in role

7 Evidence for supporting self management grows every year. Research is up to date Internationally, studies are consistently positive Research has used a range of methodologies. Studies are from small to large scale. It shows that supporting self-management can improve: self confidence / self efficacy self management behaviours quality of life clinical outcomes patterns of healthcare use The evidence

8 Active support works best Research shows that more active support focused on self-efficacy (confidence) and behaviour works best to improve outcomes. Information and knowledge alone are not enough.

9 Active support works best Source: Prof Judy Hibbard, University of Oregon Approaches that focus on whether people are ready to change work well.

10 Self monitoring and agenda setting reduce hospitalisations, A&E visits, unscheduled visits to the doctor and days off work or school for people with asthma (Gibson et al 2004). Goal setting for older women with heart conditions reduces days in hospital and overall healthcare costs (Wheeler et al 2003). Telephone support may improve self care behaviour, glycaemic control, and symptoms among vulnerable people with diabetes (Piette et al 2000). Motivational interviewing improve self efficacy, patient activation, lifestyle change and perceived health status (Linden et al 2010). Individual education and group sessions improve symptoms for people with high blood pressure (Boulware et al 2001). Examples of improvement

11 The Co-creating Health model ©The Health Foundation

12 Agenda setting – Identifying issues and problems – Preparing in advance – Agreeing a joint agenda Goal setting – Small and achievable goals – Builds confidence and momentum Goal follow-up – Proactive – instigated by the system – Soon – within 14 days – Encouragement and reinforcement Becoming an active partner Making change Maintaining change The Three Enablers

An Integrated Approach 13 ProgrammeWhoRole changeFocus Patient From passive patient to self-management Activation and partnership: confidence and skills Clinician From expert who cares to enabler who supports self- management Building the knowledge, skills and attitudes needed to provide effective self- management support Service From clinician- centred services to services that have self-management support as their organising principle Embedding the 3 enablers into everyday practice by building them into systems and care pathways Self-management Programme Advanced Development Programme Service Improvement Programme

Self Management Programme outcomes producing statistically significant changes in: positively engagement with life constructive attitude/approach towards condition more positive emotional well being using self-management skills and techniques “I used to go to the doctor only when they summoned me, and then say ‘What are you going to do to fix my problem?’. But now I’m saying like, ‘I’m not sure these particular painkillers are working the way we hoped, can we try something else? What could I do myself? ’ “ Person living with a long-term condition Skills developed.... Setting the agenda Setting goals Problem solving Develop the confidence Understand their condition Develop skills

Practitioner Development Programme outcomes 15 Practice positively influenced: patients’ confidence to self manage agenda setting setting own goals collaborative problem solving goal follow up patients’ experience Community matron Clinician tutor “It’s a change from the traditional approach where say ‘You need to do this”, and the patient says “you’re the boss”, but doesn’t actually do it. We used to wonder why that wasn’t working” “Now I use agenda setting with my patients and I start by asking ‘what do you want us to do today?’ Patients appreciate this different approach because you are giving them the power. You work out the goals and the steps together and they are empowered to carry on and work on it on their own. So you may need to see them a bit more at first, but in the long run you need to see them less often.”

Patient Confident in Self Management Organisational Changes Pre-visit changes During visit changes Post-visit changes Primary Drivers Secondary Drivers Outcome Service Improvement Programme The 3 Enablers Agenda Setting Goal Setting Goal Follow Up Adapted from Robert Lloyd and Richard Scoville, Better Quality through Better Measurement

17 Diabetes The Whittington Hospital and Haringey and Islington PCTs Guys & St Thomas and Southwark PCT COPD Addenbrokes and Cambridgeshire PCT NHS Arran and Ayrshire Depression SW London MH Trust and Wandsworth PCT Torbay Care Trust and PCT Chronic Pain Calderdale and Huddersfield Trust and Kirkees PCT A model for all LTCs A model for all long-term conditions

Improving lives in chronic pain?

19 ©The Health Foundation Conclusion Person living with a long-term condition ‘I’d like to thank you both for giving me back the life I thought I’d lost, its made me realise I was holding myself back’