1. Improving Outcomes by Helping People Take Control
In the next [x] minutes, I want to share with you a model for how we can deliver ‘no decision about me without me’ for people living with a long-term condition. The model is called Co-Creating Health. Supporting people to manage their long-term condition can improve the patient’s experience, improve their quality of life and improve clinical outcomes. Co-Creating Health is an evidence-based approach. A demonstrator programme has been running since 2007, showing how the NHS can change the way we deliver support to people living with a long-term condition for better outcomes and a more efficient use of our limited resources.
The theory and practice of Co-creating Health

2. Why support self-management?
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
Care planning: A system of regular scheduled appointments, providing proactive structured support
The greatest challenge for the NHS is no longer curing infectious diseases or treating acute conditions. The greatest challenge now is enabling the nearly1 in 3 people who have a long-term condition – whether coronary heart disease or diabetes; asthma or COPD; chronic pain or rheumatoid arthritis; Parkinson’s disease or as a survivor of cancer treatment – to live healthier and longer lives without bankrupting the NHS.
If that is the challenge, what is the reality? The reality is that People who live with a long-term condition spend very few hours in contact with health service. Some of those hours are for routine tests and appointments; many are for crisis interventions. Treating their long-term condition demands a different sort of health service, one in which the primary function is to support people to self-manage.
This picture in this slide was drawn by people living with a long-term condition supported by some clinicians. It really does capture that reality nicely.
There is a growing appreciation in health services of this reality and of the central importance both to improving outcomes and to improving quality of people with a long-term condition being actively engaged in their care.
Care pathways: providing
specific interventions
NB : People may also be accessing a wide variety of other support e.g. from within their communities

3. What is supported self-management?
“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.
Supporting self-management is very different from telling patients what to do. Being a good ‘self-manager’ is very different to following the doctor’s orders.
To be effective at managing their own health, a patient must have a central role in determining their care, one that fosters a sense of responsibility for their own health.
A health services that supports people to manage their condition ensures that they have the confidence and the skills to do so. Supporting self management involves providing encouragement and information to help people understand their condition, monitor symptoms and take appropriate action. This may include:
involving people in decision making
promoting healthily lifestyles
providing education about conditions and self care
motivating people to look after themselves
setting goals and checking whether these are achieved over time
proactively following up goals
providing opportunities to share and learn from other people
There are all sorts of things that nudge our behaviour. Will power may help. But for most of us most of the time, it really isn’t enough.
A little bit of audience participation: raise your hand if you have you ever determined to go to a gym regularly or to shed a few pounds? Now keep your hand raised if you were still using the gym regularly six months later
That’s why gyms charge you an annual fee. They know that those new year’s resolutions will soon wane, so they want your money up front.
Weightwatchers understands it too. That’s why their model is built around peer support. And it works in the digital age too: Websites, such as myfitnesspal, not only provide you with information and tools to help you understand what you can do and to measure your progress, but have also adopted a facebook approach, allowing you to share your progress with an online community that can support and encourage you.

4. 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.
Co-Creating Health is an evidence-based and integrated approach to supporting people to manage their long-term condition.
Co-Creating Health responds to the reality that people are, by default, managing their own condition, and provides them with the means to do it better. It aims to achieve measurable improvements in their quality of life and to improve their experience of the healthcare system, embedding self management support within mainstream health services.
Co-Creating Health achieves this by enabling patients and clinicians to take on different roles:
clinicians develop and improve the skills to support and motivate people with long-term conditions
people living with a long-term condition develop and improve their skills and knowledge to manage their own health
organisations develop new approaches that promote and support self-management.   
The Co-Creating Health approach is being demonstrated in 7 sites over 5 years from It initially focused on four conditions, each reflecting different aspects of a long-term condition. The four conditions are COPD, diabetes, mental health and chronic pain. Building on the foundations of the first years, the demonstrator sites are extending the approach to other chronic conditions.
©The Health Foundation

5. The Chronic Care Model The problems: Lack of care coordination
Lack of active follow-up
Patients inadequately trained to manage their illnesses
‘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.’
Co-Creating Health is located in the Chronic Care Model developed by Dr Ed Wagner and his team at the MacColl Institute for Health Care Innovation in the USA, a model that has been rigorously evaluated.
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Their work highlights and addresses the three problems facing managing long-term conditions:
a lack of care co-ordination
a lack of active follow-up
and patients inadequately trained to manage their illness
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In the words of Improving Chronic Illness Care, overcoming these problems: ‘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.’
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Co-Creating Health approaches these problems at their pivot point: creating productive interactions by changing the relationship between the practitioner and the patient.
Understanding have role; confident and capable in role
Supporting people on their journey of activation
Developed by the MacColl Institute
ACP-ASIM Journals and Books

6. The evidence 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
There is strong evidence from over 600 studies and across a range of conditions – from arthritis to diabetes, COPD to hypertension; coronary heart disease to rheumatoid arthritis.
The research is up to date. Most studies have been published in the past 15 years.
Internationally, studies are consistently positive: from the UK, North America, Europe, Australasia and Asia are available. The findings are similarly positive across all countries.
The research has used a range of methodologies, including systematic reviews, randomised trials and observational and comparative studies.
Studies sizes have ranged from tens of people to several thousand.
The evidence shows that when people are supported to look after themselves, they feel better, enjoy life more and have fewer visits to GPs, fewer admissions to hospital and, when they are admitted, shorter lengths of stay, costing health services less:
Studies have shown a wide range of improvements:
people living with arthritis reported a 12% reduction in pain; their disability decreased by 7%
people living with diabetes had a significantly reduction [0.9%] in HbA1c, improvements in their quality of life as well as their diet and exercise
people with hypertension saw a 20% reduction in systolic blood pressure
the confidence of people with asthma to manage symptoms improved, they had a more appropriate use medication and reduced hospital admission
reduced hospital admission COPD, asthma, CHD –
the number of sick days for people with rheumatoid and osteo-arthritis was cut in half

7. Active support works best
Research shows that more active support focused on self-efficacy (confidence) and behaviour works best to improve outcomes.
Approaches that focus on whether people are ready to change work well.
Information and knowledge alone are not enough.
How do we support people to manage their condition more effectively? Again, the evidence is clear.
We know what does not work:
Providing information is helpful, but it is not sufficient: without the confidence and skills to use information, the information will not lead to better health outcomes. Telling a person that they need to lose weight, why they need to lose weight and that they can achieve it through exercise and eating less fat and more fruit rarely changes their behaviour
Self management courses alone are of limited effectiveness if isolated from mainstream services. The gains in confidence are insufficient when faced with the medical model of care and the infrastructure that supports it.
We also know what does work: methods that improve people’s activation and self-efficacy are the most effective ways of improving self-management, healthy behaviours and outcomes for people living with a long-term condition.
collaborative interactions have the greatest impact on changing people’s behaviour and supporting them to take on responsibility for their healthcare
shared agenda setting, collaborative goal setting and health service follow-up on goals lead to better quality of life, more appropriate patterns health service utilisation and better clinical outcomes.
Source: Prof Judy Hibbard, University of Oregon

8. Examples of improvement
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).
So, the evidence shows that methods that improve people’s self-efficacy are most effective. There are many examples from the evidence. Here are a few:
A Cochrane review of 36 trials found that self monitoring and agenda setting reduced hospitalisations, A&E visits, unscheduled visits to the doctor and days off work or school for people with asthma
A US trial found that personalised goal setting for older women with heart conditions reduced days in hospital and overall healthcare costs
A trial found that telephone support may improve self care behaviour, glycaemic control, and symptoms among vulnerable people with diabetes
US researchers found that motivational interviewing helped improve self efficacy, patient activation, lifestyle change and perceived health statu
A large meta analysis found that individual education and group sessions improved symptoms for people with high blood pressure

9. The Co-creating Health model
Co-creating Health achieves change through developing informed, active patients; prepared, pro-active clinical teams; and a healthcare system that embeds self-management support processes.
It takes a programmatic approach to achieving these goals:
A Self-Management Programme for patients
A Practitioner Development Programme for clinicians
And a Service Improvement Programme that enables system defaults to change.
It applies service improvement approaches – small tests of change – so that change is both effective and embedded.
It focuses on three active approaches that enable people to self-manage: shared agenda setting; collaborative goal setting; and goal follow-up by services.
©The Health Foundation

10. Becoming an active partner
The Three Enablers
Becoming an active partner
Making change
Maintaining change
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
There are three key techniques that enable people to self-manage: shared agenda setting; collaborative goal setting; and goal follow-up by services.
Agenda Setting
The first enabler is agenda setting. In Co-creating Health, people prepare in advance the issues they want to explore and the problems they want to solve. It signals from the beginning that patients are active partners in their care. At the beginning of the consultation, the patient and the clinician agree the aim of the meeting.
There are a number of simple, practical ways in which health services can support people to set the agenda for their consultation, for example, sending them an agenda setting sheet in advance of the consultation; sharing any tests results in advance; turning the waiting time when the patient sits passively in the waiting room waiting for their appointment in to an active preparation time, with results, an agenda setting sheet and support by a healthcare assistant.
Collaborative Goal Setting
Through collaborative goal setting, the clinician supports the patient in choosing small and achievable goals. Goals that are SMART (specific, measurable, achievable, resources and time-bound) help to build confidence and momentum. Collaborative goal setting with a clear action plan is at the heart of Co-Creating Health. It is the bridge between intention and result. It involves the clinician helping the person identify the barriers – physical, psychological and emotional – that may prevent them taking responsibility for their care and then supporting the person to find the ways of overcoming those barriers. Setting small but achievable goals can help build confidence and momentum. They lay the foundations for the bigger successes of the future. Unrealistic goals de-motivate. They do not change behaviour.
There are a simple and practical ways in which health services can support people to set their own goals, for example, a useful technique is using the ‘confidence ruler’ – a simple 1-10 scale against which the patient assesses their confidence of achieving the goal under discussion. The clinician uses open questioning to help patients set goals in which their confidence is at least 7 – a score that will also give the clinician confidence that the person will achieve their goal, becoming a better self-manager and more likely to achieve long-term stability or improvement in their chronic condition. Services could also put the goals and action plans in a contract of responsibilities – replacing the traditional ‘prescription’ of activity and discharge letter – and send this to the patient, copying it to other relevant clinicians involved in the patients care and support. Note, this intentionally turns around the traditional approach to treating the patient as a passive object, in which correspondence about the patient is sent to other clinicians.
Goal follow up
The third key enabler is goal follow up. Conventional services are not in contact with a patient between routine appointments – often a year apart. Evidence shows that unless goals are followed up within a fortnight, providing encouragement and support for people, they are less likely to deliver on their commitment to change their behaviour.
Goal follow up has been the most difficult enabler to embed in to practice. It is perhaps the most challenging culturally – clinicians are used to routine follow up appointments at six monthly intervals or longer; services are not geared for rapid follow up and support. But there are simple and effective ways of building in rapid follow up.
s or texts can be typed up at the end of a consultation and set up to send automatically a couple of weeks later
administrators as well as clinical staff can make follow-up phone calls, also helping them feel more a part of the team
general practice can follow up on progress after a hospital appointment when the patient sees the GP or practice nurse about their condition or some other ailment.
An Example
Let’s take an example. Jo Smith has diabetes. A week before the consultation, Jo receives her HbA1c test results along with an agenda setting sheet to prompt Jo to think about the questions she wants to address. Jo is concerned that her HbA1c is higher than she wants it to be. She decides that at the consultation she wants to explore how she can do a bit of exercise. She is quite anxious about this. She doesn’t have much time, she can’t swim and she feels embarrassed about her body shape, so would not like to go to a gym. During the consultation, the specialist nurse asks her what she might incorporate a bit more walking in to her daily routine. Jo thinks she might get off the bus one stop before work and walk the rest of the way every day. The nurse asks Jo to rank on a scale of 1 to 10 how confident she is that she will do this. Jo is not very confident: she has to drop the kids at school and she doesn’t like walking in wet weather. She decides to score her confidence 5. The nurse then asks further questions to explore how she might establish a goal she is more confident about. After the discussion, Jo feels confident that she could walk the extra bus stop twice a week. She scores 7 on the confidence ruler. A week later a text pops up on Jo’s phone: How’s the walking going?’ A week later, the nurse calls Jo and asks her the same question.

11. An Integrated Approach
Self-management Programme
Advanced Development Programme
Service Improvement Programme
Programme
Who
Role change
Focus
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
The prevailing behaviour within the NHS is for doctors to make decisions for ‘their’ patients. Equally, the prevalent attitude amongst clinicians is that ‘we’re doing it already’ and that supporting self-management will require increased resources and more time. Patients are used to being passive recipients of care and have expectations of being given the answer by the expert doctor, even though they may not act on it.
Co-Creating Health is an integrated approach to delivering change in local cultures and behaviours. Its three interventions work together to re-orientate health services – from a service in which clinicians use their expertise to ‘do to’ a patient to one in which they support a person to self-manage through team based education and training; clinical leadership; programme management; and changing the system defaults.
The Advanced Development Programme (or ADP) trains clinicians to use a variety of tools and techniques that support people with long term conditions to develop confidence in managing their own health
The Self Management Programmes (or SMP) enhances people’s self-management ability, enabling them to change their health related behaviours through information, education, skills, confidence, problem-solving
The Service Improvement Programme (or SIP) improves the effectiveness of health service organisation and delivery to facilitate a more active role for patients in managing their health and care.
A key part of the training programmes is that they are co-facilitated: patients and clinicians play an equal role in both the ADP and the SMP. This has been one of the most powerful elements of the programme. It visibly models and demonstrates working in partnership.

12. Self Management Programme outcomes
“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? ’ “
Skills developed ....
Setting the agenda
Setting goals
Problem solving
Develop the confidence
Understand their condition
Develop skills
Person living with a
long-term condition
The Self-Management Programme is a group-based intervention drawing upon the evidence and experience of what works in running self-management programmes. It draws heavily upon the Expert Patient Programme, but also includes evidence-based approaches from different disciplines and programmes.
The programme is run over seven 3-hour sessions with 12 to 16 patients in each group. As with the Advanced Development Programme, the course is co-facilitated by a person with a long-term condition and a clinician. It aims to increase health literacy and people’s activation so that they have the confidence and competence to manage their own health – their diet, their exercise, their breathing, their medication. It covers generic as well as condition specific material covered and teaches people skills as well as knowledge.
The Self-management Programme is also reaching those who have a lower activation level, thus reaching people with the most potential to gain in activation.
The Self-management Programme develops:
people’s ability to work in collaboration with the health professional to set the agenda for their consultation
their ability to set their own goals – which means they are therefore more likely to stick to than if the goals are set for them
and their ability to problem solve, so that they can stick to their plans when life gets in the way
It helps them to develop:
the confidence to communicate assertively and effectively
the knowledge to understand their condition, their symptoms and their treatment
the skills to manage their condition as part of their life, through, for example, relaxation and anxiety management; pacing their activity; managing their diet; and doing appropriate exercise
The evaluation of the Co-Creating Health programme has shown that people who do the Self-Management Programme
use the self-management skills and techniques they have learnt to prevent and manage their symptoms
and that this helps them to more positively engage with life – for example doing interesting, enjoyable things and are making the most of their life
to adopt a more constructive attitude and approach towards their condition, being inspired by believing that if others can cope with similar problems so too can they
and to have a more positive emotional well being
... 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

13. Practitioner Development Programme outcomes
“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”
Practice positively influenced:
patients’ confidence to self manage
agenda setting
setting own goals
collaborative problem solving
goal follow up
patients’ experience
Community matron
“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.”
The ADP helps clinicians use their time more effectively.
It strengthens clinicians’ knowledge of their role as an enabler of self-management and their skills to best support self-management for people living with a long-term condition. For example, clinicians improve their skills in
how to establish an empathetic relationship by demonstrating an interest in the patient’s beliefs, knowledge and feelings
how to support a patient to identify and select their self-management goals and to overcome barriers to their goals by supporting them to solve problems for themselves
and how to provide or ensure patients receive evidence-based motivational follow up designed to support them to achieve their self-management goals
Ambivalence is a normal part of change. The ADP helps clinicians learn the skills to recognise it, explore it, work with it and support people through it.
Crucially, in starting where clinicians themselves start, the course also increases clinicians’ knowledge of the clinical evidence regarding the effectiveness of co-creating health and self-management support.
The Advanced Development Programme uses evidence-based teaching methods, providing opportunities for reflection, peer support, feedback and skill rehearsal, including role play, so that they can practice the techniques, such as goal setting, they will be teaching to patients
As one community matron put it: “the Advanced Development Programme ... has taught me how to really listen to patients .... It’s a change from the traditional approach where you visit a patient and say “okay, today we’re going to do this…”, and the patient says “okay, you’re the boss”. We used to wonder why that wasn’t working... you may need to visit a bit more at first, but in the long run you need to visit less often.”
Getting clinicians to recognise the benefits of the ADP and then to follow through are two of the key challenges. We have learnt that simple things can again make the difference – for example, running taster sessions improves both recruitment and readiness to learn. Peer support and critical mass are also key – so it is better to put a whole group practice or ward team through the programme than to take a more scatter-gun approach
Clinician tutor

14. Service Improvement Programme
Secondary Drivers
Outcome
Primary Drivers
IMPROVEMENT
Organisational Changes
Pre-visit changes
During visit changes
Post-visit changes
The 3 Enablers
Agenda Setting
Goal Setting
Goal Follow Up
Patient Confident in Self Management
One of the unique features about Co-creating Health is that it works on both individual and the system. As well as training clinicians and patients in the skills to take on new roles, it also changes the system defaults.
Our behaviour is constrained by the context within which we work. It is difficult for a patient to think about the important issues to discuss in a consultation if they don’t have their test results. But health systems are currently organised so that results flow from the laboratory to the clinician who then shares them with the patient during the consultation.
The Service Improvement Programme puts into practice the tools and processes to support the changed behaviours. It adopts the Institute for Healthcare Improvement quality improvement methodology, testing and implementing changes across the care pathway and enabling, systematic delivery of self-management support. It starts with local systems as they are and helps clinicians and managers work together to re-orientate them so that they enable the clinical model of self-management support to be delivered. The Service Improvement Programme focuses on the getting tools for the three enablers in to local systems – so that information flows to right person at the right time and so the system supports clinicians and people with a long-term condition to co-create health.
Adapted from Robert Lloyd and Richard Scoville, Better Quality through Better Measurement

15. Conclusion
‘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’
The essence of Co-Creating Health is the recognition that the health care system for people living with a long-term condition must become a health support system.
It does this by helping clinicians and patients change their roles. The clinician is no longer simply an expert who tells the patient what to do, but a professional skilled in enabling people living with a long-term condition to change their behaviour; the patient is no longer the passive recipient of care packages which they do not follow, but an activated self-manager of their condition.
Co-Creating Health makes available a range of tools and techniques to help – from agenda setting; through collaborative goal setting; to goal follow up. It trains clinicians and patients to use these tools and techniques. And it gives clinicians and managers the tools to change it change the system so that its supported self-management can be put in to practice.
The implementation Co-creating Health in the demonstration sites is showing that it improves the quality of people’s lives and save NHS resources.
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In the words of one person living with a long-term condition who had been on the Self-management Programme and is supported by clinicians who have been on the Practitioner Development Programme in a hospital that has redesigned its services to support self-management: ‘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’
Person living with a long-term condition
©The Health Foundation