‘Collaborating for better care’ Regional Stakeholder Conference

11th February 2014

wi-fi access: Durham Guest

Password: greengrass

@AHSN_NENC#BPPconf

Welcome and Introduction

Professor Paula Whitty

Director of NEQOS & Acting NENC AHSN Knowledge &

Information Programme lead

Overview of the AHSN and its

work with partners

Dr Séamus O’Neill

Chief Executive Officer,

North East & North Cumbria AHSN

This presentation

• The context

• The remit of the AHSN

• Our work programmes and stakeholders

• Introduce Sir Andrew Dillon

The contextInnovation in the NHS:

• Innovation, Health and Wealth (IHW) Report published in December 2011 sets out the contribution that the NHS will make to the Plan for Growth.

• Innovation and adoption are important to the NHS, society and the economy

- Transforming patient outcomes

- Simultaneously improve quality and productivity

- Drive economic growth

Improving health outcomes

• Provide system-wide integration

• Dissemination of best practice at pace and at scale

Creating wealth

• Be judged against an economic model of performance

• The treasury trumps DH

Working in partnership with other organisations

• Generate significant external funding

• Collaborate and jointly invest with others in the system

• Support research participation

But “are not expected to do everything”

The AHSN remit- Academic Health Science Networks are tasked with -

The Work Programmes

AHSNs : A timeline and Stakeholder involvement• December 2011 – Innovation Health and Wealth

• May 2012 – Guidelines on scope

• July 2012 – first Stakeholder event

• September 2012 – Expression of Interest

• December 2012 – second stakeholder event

• Jan/Feb 2013 – Prospectus submitted* and panel interview

• April 2013 – Designation

• June 2013 – third Stakeholder event

• Sept/Oct 2013 – Senior Appointments

• December 2013 – Contract signed, SLAs, project call

• February 2014 – fourth Stakeholder event

• February 2014 – Best Practice Partnership Event, Projects funded

* http://www.ahsn-nenc.org.uk/AHSN_Prospectus.pdf

NHS Foundation Trusts Clinical Commissioning Groups (CCGs)

City Hospitals Sunderland NHS Foundation Trust Northumberland CCG

County Durham & Darlington NHS Foundation Trust Newcastle West CCG

Gateshead Health NHS Foundation Trust Newcastle North & East CCG

Newcastle upon Tyne Hospitals NHS Foundation Trust North Tyneside CCG

North Tees & Hartlepool NHS Foundation Trust Gateshead CCG

Northumbria Healthcare NHS Foundation Trust South Tyneside CCG

North Cumbria University Hospitals NHS Trust Sunderland CCG

Northumberland Tyne & Wear NHS Foundation Trust North Durham CCG

South Tees Hospitals NHS Foundation Trust Durham Dales Easington & Sedgefield CCG

South Tyneside NHS Foundation Trust Darlington CCG

Tees Esk & Wear Valleys NHS Foundation Trust Hartlepool & Stockton-on-Tees CCG

North East Ambulance Service NHS Foundation Trust South Tees CCG

Cumbria Partnerships NHS Foundation Trust Cumbria CCG

Higher Education Institutions Other

Newcastle University Clinical Research Network (CRN)

Durham University Local Education & Training Boards (LETB)

Teesside University

Northumbria University

Sunderland University

Cumbria University

AHSN NE&NC Members

AHSNs and Wealth Creation

AHSNs will support Wealth Creation through: -

- Creating measurable impact on UK companies

- Exploitation of industry resources

- Ensuring opportunities for collaborators

- Provision of expert advice

- Cultural and knowledge exchange

- Contributing to the SBRI Programme

- Working with the LEPs and other bodies such as UKTI, NECC, NICE, ABPI and ABHI

Priority areas

Improving outcomesSystem-wide working

Local authorities

“A place where things get sorted”

Best practice

Adoption & Dissemination

Savings

Wealth creation

InnovationSMEs

Charities

The AHSN Narrative

Strategic Clinical NetworksHealth Education England

Local Authorities

NICE

NICE – right all along?

Are we being influenced?

• Desire for national guidance

• Systems to support implementation

• Sufficient resources

• Credible and robust guidance

• Effective dissemination

Implementation

Why have NICE?• People have a reasonable expectation of

consistency in service availability

• Evidence is a desirable starting point in clinical decision making

• Standards are important

• Uncertainty compromises good quality care

A national perspective on

implementation of NICE –

progress and benefits

Sir Andrew Dillon

Chief Executive Officer of NICE

NICE support for high quality care

Andrew Dillon

Collaborating for Better Care

Chester Le Street, February 2014

Our public health guidance is helping to

deal with some on the nation’s biggest

challenges, including obesity, alcohol,

tobacco, poor diet and lack of exercise

With our new responsibility for providing

practice guidance and Quality Standards

for social care, we can help deliver better,

more integrated services

Finding our recommendations on NHS and

social care, and public health is easy using

NICE Pathways

• Collaborate to drive uptake of NICE guidance

• Develop robust data collection methodologies to benchmark and

evidence compliance

• Help develop and improve NICE methodologies

• Engage with companies to help develop the value proposition for their

products

• Undertake research, for example on use of NICE guidance in practice

• Create education and awareness sessions for AHSN members

NICE and AHSNs: working together

We'd love to see you at our

conference in May

Introduction to the Regional Best

Practice Partnership

Professor Paula Whitty

Director of NEQOS

The Partnership will:• Draw on local knowledge and expertise relevant to the

implementation of specific pieces of NICE Guidance, Technology Appraisals and Quality Standards.

• Share research-derived evidence on implementation approaches and change professional practice and the organisation of care.

• Provide expert advice on tackling specific barriers to implementation.

• Support providers and commissioners in delivering evidenced based health care across the health economy.

• Help to develop and build informal professional networks.

Some of the benefits you’ve

identified:• ‘Opportunities for multi-agency contact’

• ‘Sharing good practice especially across boundaries’

• ‘Support for big pathway changes. A regional forum would be a useful route for this. Not difficult but needs a system’

• ‘At present everybody is doing their own implementation’

• ‘Regional structure has been lost and needs to be a regional forum’

• ‘It is difficult to track events across boundaries. A system to do this would be helpful’.

Developing the Partnership

• Today is about setting the direction of travel- and using what comes out to inform a draft work programme

• Workshop themes this afternoon have been drawn from the early feedback we’ve had so far.

• A follow up workshop on March 14th in Durham – For you to get actively involved in creating a

Partnership that works for you;– Agree the priorities for the work programme based on

our findings/ ‘sense check’.

‘What is the role of the patient in

implementing NICE guidance?’

Professor Richard Thomson

Professor of Epidemiology and Public Health

Newcastle University

What is the role of the patient in implementing

NICE guidance?Richard Thomson

Professor of Epidemiology and Public HealthAssociate Dean for Patient and Public Engagement

Decision Making and Organisation of Care Research Programme

Institute of Health and SocietyNewcastle upon Tyne Medical School

Content

• Rationale

– Individual patient role

– Collective role of patients/public

• My perspective – shared decision making and supported self management

– What are they? Why important?

• Guidelines and patient preferences

• Role(s) of the patient (and public) in implementation

• Conclusions/questions

You can’t implement guidelines without patient and public involvement

The importance of patient preferences: shared decision making and supported self

management

UK Policy: UK Government

36

Shared decision making will become the norm:

“No decision about me without me”

SDM Guidelines

An incompatible tension or mutually

supportive?

Models of clinical decision making in the consultation

Paternalistic Informed ChoiceShared

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

Involving people in their care

Hours with HCP

= 4 hours in a year

Self-management

= 8756 hours in a year

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)

Better outcomes in SSM/long term care

SDM – evidence

Decision making about implantation of ICDs

• Increasing implant rates BUT significant unexplained variation in ICD use (Shah et al., 2009)

• Absence of patient perspective in clinical practice guidelines about ICDs (Joyce et al., 2013)

• “[…]I don’t think anything I read touched on how depressed I was going to be about it” [post-implantation].

“I was happy that I got it…but then sometimes when it would shock me, it was like why did I get this damn thing?”Matlock et al., 2011

Patient perspectives

“The doctor said . . . Your heart could run away and you’d be dead. I’m like . . . oops! Ok, that was it [decision]! I’m not that old. I don’t want to die. I just told him [physician] I wanted to get better. I wasn’t ready to die”.

Results: six national guidelines• Only two guidelines considered the psychosocial and quality of life effects

of ICDs in a critical and meaningful way

• Only one mentioned the need to introduce the possibility of deactivation prior to implantation.

• Data on the incidence of adverse effects were largely absent

• Only one mentioned the need to explore patient preferences (specifically with regard to elderly patients), and to avoid making assumptions about values and preferences relating to quality versus length of life, but with no guidance for clinicians on how to do this.

• No mention of power or responsibility sharing or a partnership approach to decision making.

• Without exception, the CPGs reviewed concentrated on device benefits (i.e. survival benefit), which in itself biases the decision making process for the patient.

Guidelines and patient preferences: working together

Practice variation: unwarranted

and warranted sources

• Variable access to resources and expertise

• Insufficient research

• Unfounded enthusiasm

• Over-learning; selective inattention

• Faulty interpretation

• Poor information flow

• Poor communication

• Role confusion

• Clinical differences among patients

• Variable risk attitudes

• Variable preferences among health outcomes

• Variable willingness to make time trade-offs

• Variable tolerance for decision responsibility

• Variable coping styles

Unwarranted Warranted

Knowledge-Based Patient-Centered

With thanks to Al Mulley

Why are patient preferences

important for guidelines?

• Ethical argument – patients want to be involved

in decisions

• Strength of evidence will vary for important

elements of the guidance

• Even when firm evidence, patients vary in their

preferences

• More than one treatment option commonly exists

• Patient preferences affect concordance and

outcomes

• The challenge of multiple conditions/co-

morbidities

How can we support the role(s) of the patient (and public) in

implementation

Patient role

• SDM and SSM – both need support, but also role for “patient push”

“When we want your opinion, we’ll give it to you”

Accessible 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)

Benefits and Risks of Intrauterine System (IUS)

Treatment option

Benefits Risks 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

Benefits Risks 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

Patient push: 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

Skills training: SDM model for clinical practice

55

NICE and patient experienceIts own guidance and quality standards

Excerpts: QS15 Quality standard for patient experience in adult NHS services

• Statement 4. Patients have opportunities to discuss their health beliefs, concerns and preferences to inform their individualised care.

• Statement 5. Patients are supported by healthcare professionals to understand relevant treatment options, including benefits, risks and potential consequences

• Statement 6. Patients are actively involved in shared decision making and supported by healthcare professionals to make fully informed choices about investigations, treatment and care that reflect what is important to them.

• Statement 7. Patients are made aware that they have the right to choose, accept or decline treatment and these decisions are respected and supported.

• Statement 9. Patients experience care that is tailored to their needs and personal preferences, taking into account their circumstances, their ability to access services and their coexisting conditions

Wider role of patients and the public

• Awareness raising and skills

• Patient representative groups (e.g. Arhythmia Alliance and ICDs; MIND and mental health; National Voices)

• HealthWatch

• Other organisations (e.g. Macmillan Cancer)

• Practice and commissioning PPI groups

• Patient engagement/experience forum

• HealthWorks Newcastle – health trainers

Questions• How can we best integrate SDM/SSM and

NICE Guidance?

• How can we best empower patients?

• Should we produce/promote short form decision support for key guidelines?

• How best to engage patient representative bodies in implementation?

• How to give clinicians and patients the skills to do this?

• Role of patient experience network/HealthWatch/health trainers?

References

Joyce, K., et al. (2012). Incorporating the patient perspective: a critical review of

clinical practice guidelines for implantable cardioverter defibrillator therapy.

Interventional Cardiac Electrophysiology 36(2): 185-197.

van der Weijden, T., et al. (2010). "How to integrate individual patient values and

preferences in clinical practice guidelines? A research protocol." Implementation

Science 5(10): 1-9.

THANK YOUrichard.thomson@newcastle.ac.uk

Workshop Sessions:1 - How the Best Practice Partnership can utilise Implementation Science - Riverside Suite, (bottom of this suite) – Prof Paula Whitty and Dr Justin

Presseau

2 - Enabling front line clinical leadership to facilitate evidence-based Healthcare - Colin Milburn Suite, Level 2 - Dr Simon Eaton

3 - Implementing evidence based care and measuring best practice outcomes across integrated pathways - Riverside Suite, Level 1 (remain

here) – Dr Jackie Gray and Dr Liz Lingard

4 - The role of Public and Patient leadership in promoting and driving improvements Lumley Lounge, Level 2 - Prof Richard Thomson & Prof

Chris Drinkwater CBE

Thank you

@AHSN_NENC#BPPconf