‘Collaborating for Better Care’ – Regional Stakeholder Conference, 11th February 2014 Presentation slides from morning plenary session

1. ‘Collaborating for better care’
Regional Stakeholder Conference
11th February 2014
wi-fi access: Durham Guest
Password: greengrass
@AHSN_NENC
#BPPconf

2. Welcome and Introduction
Professor Paula Whitty
Director of NEQOS & Acting
NENC AHSN Knowledge &
Information Programme lead

3. Overview of the AHSN and its
work with partners
Dr Séamus O’Neill
Chief Executive Officer,
North East & North Cumbria AHSN

4. This presentation
• The context
• The remit of the AHSN
• Our work programmes and stakeholders
• Introduce Sir Andrew Dillon

5. The context
Innovation 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

6. 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 -

7. The Work Programmes

8. 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

9. 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

10. 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

11. Priority areas
Improving outcomes
System-wide working
Local authorities
“A place where things get sorted”
Best practice
Adoption &
Dissemination
Savings
Wealth creation
Innovation
SMEs
Charities
The AHSN Narrative
Strategic Clinical
NetworksHealth Education England
Local Authorities
NICE

12. 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

13. A national perspective on
implementation of NICE –
progress and benefits
Sir Andrew Dillon
Chief Executive Officer of NICE

14. NICE support for high quality care
Andrew Dillon
Collaborating for Better Care
Chester Le Street, February 2014

16. 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

18. With our new responsibility for providing
practice guidance and Quality Standards
for social care, we can help deliver better,
more integrated services

20. Finding our recommendations on NHS and
social care, and public health is easy using
NICE Pathways

25. • 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

26. We'd love to see you at our
conference in May

27. Introduction to the Regional Best
Practice Partnership
Professor Paula Whitty
Director of NEQOS

28. 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.

29. 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’.

30. 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’.

31. ‘What is the role of the patient in
implementing NICE guidance?’
Professor Richard Thomson
Professor of Epidemiology and
Public Health
Newcastle University

32. What is the role of the
patient in implementing
NICE guidance?
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. 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

34. You can’t implement guidelines without patient
and public involvement

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

36. UK Policy: UK Government
36
Shared decision making will
become the norm:
“No decision about me
without me”

37. SDM Guidelines
An incompatible tension or mutually
supportive?

38. 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)

39. 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

40. Involving people in their care
Hours with HCP
= 4 hours in a year
Self-management
= 8756 hours in a year

41. 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

42. 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)

43. • “[…]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”.

44. 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.

45. Guidelines and patient
preferences: working together

46. 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

47. 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

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

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

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

51. 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)

53. 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

54. 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

55. Skills training: SDM model for
clinical practice
55

56. NICE and patient experience
Its own guidance and quality standards

57. 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

58. 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

59. 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?

60. 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.

61. THANK YOU
richard.thomson@newcastle.ac.uk

62. 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

63. Thank you
@AHSN_NENC
#BPPconf