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Angela CoulterDirector of Global Initiatives
June 2012
C O - P R O D U C I N G H E A LT H
CHANGING RELATIONSHIPS
CHRONIC DISEASE
• 36,000,000 people die from non-communicable diseases each year
• NCDs account for 63% of global deaths
• More than 90% of these deaths occur in developing countries
• Most could have been prevented2011 UN High-level meeting on NCDs 2011 3
MANAGING CHRONIC DISEASE
Professional care – 5 hours per year
Self-care – 8,755 hours per year
4
AN UNTAPPED RESOURCE?
WHAT WE HAVE LEARNT
Traditional paternalistic practice styles…….
• Create dependency• Discourage self-care• Ignore preferences• Undermine confidence• Do not encourage
healthy behaviours
6
INFORMED, EMPOWERED PATIENTS
Have the knowledge, skills and confidence to manage their own health and healthcare,
And they……• Make healthy lifestyle choices• Make informed and personally
relevant decisions about their treatment and care
• Adhere to treatment regimes • Experience fewer adverse events• Use less healthcare
THROUGH THE PATIENT’S EYES
• Confusing• Fragmented• Unresponsive
DIABETES WEB OF CARE
ALZHEIMER’S WEB OF CARE
WHAT PATIENTS WANT
• People want co-ordination. Not necessarily (organisational) integration.
• People want care. Where it comes from is secondary.
National Voices 2012
Informed,involvedpatient
Productiveinteractions
Prepared,proactive
practice team
Improved outcomes
DeliverySystemDesign
DecisionSupport
ClinicalInformation
Systems
Self-Management Support
HEALTH SYSTEMCOMMUNITY
Chronic Care Model
13
SHARING EXPERTISE
Clinician
• Diagnosis• Disease aetiology• Prognosis• Treatment options• Outcome probabilities
Patient
• Experience of illness• Social circumstances• Attitude to risk• Values• Preferences
SHARED DECISION MAKING
A process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences.
KEY COMPONENTS
1. Reliable, balanced, evidence-based information outlining prevention, treatment, or management options, outcomes and uncertainties
2. Decision support with clinician or health coach to clarify options and preferences
3. System for recording, communicating and implementing patient’s preferences
DECISION AIDS: THE EVIDENCE
• In 86 trials addressing 35 different screening or treatment decisions, use has led to:
• Greater knowledge
• More accurate risk perceptions
• Greater comfort with decisions
• Greater participation in decision-making
• Fewer people remaining undecided
• Fewer patients choosing major surgery
Stacey et al. Cochrane Database of Systematic Reviews, 2011
SELF-MANAGEMENT SUPPORT
YEAR OF CARE: CARE PLANNING
18
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Knowledge and health
beliefs
Emotional Behavioural Social Clinical
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Knowledge and health
beliefs
Knowledge and health
beliefs
EmotionalEmotional BehaviouralBehavioural SocialSocial ClinicalClinical
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Knowledge and health
beliefs
Knowledge and health
beliefs
EmotionalEmotional BehaviouralBehavioural SocialSocial ClinicalClinical
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Knowledge and health
beliefs
Knowledge and health
beliefs
EmotionalEmotional BehaviouralBehavioural SocialSocial ClinicalClinical
Engaged,
informed patient
HC
P com
mitted to
partnership working
Organisational processes
Commissioning- The foundation
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Knowledge and health
beliefs
Emotional Behavioural Social Clinical
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Individual ’s story Professional ’s story
Share and discuss information
Goal Setting
Action ActionActionAction
Knowledge and health
beliefs
Knowledge and health
beliefs
EmotionalEmotional BehaviouralBehavioural SocialSocial ClinicalClinical
The clinic experience
Registration, recall, review, and
follow up
Access & communication
Named contact
IT templates
Awareness of approach to self-
management
Consultation skills / competencies
Multi-disciplinary team working
Knowledge of local options
Clinical expertise
Structured education/ Information
Awareness of process & options
Pre-consultation results
Access to own records
Emotional & psychological
support
WHAT WORKS?OVERVIEW OF 250 SYSTEMATIC REVIEWS
Building health literacy
• Information and education
• E-learning and ‘virtual’ support
• Telephone helplines
Shared decision making
• Question prompts
• Health coaching• Patient decision
aids• Communication
skills training
Self-management support
• Collaborative care planning
• Self-management education
• Simplified dosing and medicines information
• Home-based self-monitoring
Health promotion
• Opportunistic advice
• Targeted social marketing
• Telephone counselling
• Parenting programmes
• Mass media campaigns
• Community development
WHAT ARE THE CHALLENGES?
• Inflexible systems
• Time/resources• Clinical culture
WHAT COULD HELP?
• Clear policy goals• Effective clinical leadership,
teamwork and training• Patient and public engagement in
service redesign• Integrating decision support and
collaborative care planning into clinical pathways
• Metrics for monitoring process and outcomes
FOR MORE INFORMATION ……
Open University Press, 2011
Shared Haemodialysis
CareMartin Wilkie
Programme director26th June 2012
Renal Replacement Therapy (RRT) in the UK
There were 49,080 adults receiving RRT in the UK on 31st December 2009
Haemodialysis (HD) in 44% of dialysis patients.
Most people receiving centre based HD are passive recipients of care
Self-care has been part of dialysis from the beginning and takes several forms
Nitsch D et al NDT(2010)
Jonkoping, Sweden Guys & St Thomas’s, Kings
Examples of in-centre self-care dialysis
Dialysis Practices That Distinguish Facilities with Below- versus Above-Expected Mortality
Dialysis facilities with below-expected mortality reported that - – patients in their unit were more activated and
engaged, – physician communication and interpersonal
relationships were stronger, – dieticians were more resourceful and
knowledgeable, and – overall coordination and staff management were
superior Clin J Am Soc Nephrol 5: 2024 –2033, 2010.
Training in flexible, intensive insulin management toenable dietary freedom in people with type 1 diabetes:dose adjustment for normal eating (DAFNE) randomised
controlled trial
DAFNE study group BMJ 2002
Several interventions are necessary for success
Y & H Shared Haemodialysis Care ProgrammeDate Event
May 2010 Y&H RSG appoint Home therapies & Self care leadInspirational Team development, concept preparation, seeking support from all parties, pilot shared care dialysis work starts in York and Sheffield
Oct 2010 £400K award from Health Foundation - Closing the Gap Through Changing Relationships Programme£50K award from NHS Kidney Care
Jan 2011 Set-up phase began
Jun 2011 Key posts appointed : clinical nurse educators, project managerCourse development and piloting
Jan 2012 Start of implementation phase
Y & H Renal Network6 centres, 19 satellites, 1800 HD patients
ObservationsInfection control
Access including needlingPrescription management
Running dialysisAlarms and safety
Setting up and stripping downWaste disposal
Degrees of shared haemodialysis care
Models of haemodialysis careFullySelfCaring
CompletelyAssisted
Effectiveness enhanced care
interaction
Efficiency nurses being involved as
problem solvers and trainers
Patient at the centre empowered through
the experience of self-care
Equity access to
self-care in the hospital
Safety greater patient understanding
Timeliness no need to
wait for tasks to be
done
The Shared HD Care Package1. Training for nurses
Nursing journal
2. Training for patients during dialysis3. Clearly defined competencies4. Literature to support training
Patient hand book documenting progressPatient information leaflet
5. MeasuresOutcome, process, balancingStaff morale survey
• % of haemodialysis patients undertaking all aspects of their haemodialysis care
• % of haemodialysis patients undertaking at least five aspects of their haemodialysis care
• % of patients who have been asked about participating in shared haemodialysis care
• % of renal unit staff who have completed the purpose-designed training programme
36
Outcome measures
Oct-11
Nov-11
Dec-11
Jan-12
Feb-12
Mar-12
Apr-12
May-12
Jun-12Jul-1
2
Aug-12
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Process Measures
% of staff who are enrolled on the training programme
% of patients able to establish access (putting needles into their fistula)
Yorkshire & the Humber Shared Haemodialysis Care Programme - Measures
37
Balancing Measures % of patients satisfied or very satisfied with their dialysis care [score 5 or above]
% of staff satisfied with providing dialysis care [score 5 or above]
Aug-11
Sep-11
Oct-11
Nov-11
Dec-11
Jan-12
Feb-12
Mar-12
Apr-12
May-12
Jun-120%
5%
10%
15%
20%
25%
30%Staff on training program
A call to action for Shared Haemodialysis Care
The benefits of greater patient involvement in the management of long term conditions have been demonstrated
People on dialysis tell us how much they value having greater involvement in their care
With your help, we would like to support centre-based haemodialysis patients to greater self-efficacy
….and provide robust evidence of its valueWe need a DAFNE for dialysis!
Sharing Haemodialysis Care in Sheffield and York
Matrons: Melinda Howard & Christine StubbsShared Haemodialysis Care Educators: Katy Hancock, Collette Devlin & Tania Barnes
Sharing the Haemodialysis Care (SHC)
Development of supporting materials!
The Patient Information Leaflet
41
Local patient & staff
photographs
Local contact
details on reverse
Focus group comprised of a
group of patients &
staff
Distributed in Renal Clinics &
HD waiting areas
The patient competency handbook
“Gives a clear idea of what is available for patients to do”
“Eye catching design”
“Easy to use to teach
patients”
“Clean, simple & informative”
SHC Course For Nurses
43
1-11 Day
Module Course
3 Day Module Course
1 Day Follow up Course (6 months after completion)
• Disseminated training by staff who have completed 3 day course
• 1- 2 hour Group sessions
• 1-1 with Shared Care Educator• Future plans for e learning
This is part of a 3-tiered approach to training
Sharing Haemodialysis Care Course For
NursesA custom built 3 day course incorporating the following:
•Learning Styles & Teaching practice
•Research Evidence & Benefits
•Motivational interviewing
•The Patient Handbook
•Patient/Carer Experiences
•Quality improvement & Auditing
•Barriers
•Sustaining
•Cascading 44
The Course Journal...
45
• Sent to delegates pre course
• Self assessment pre course
• Homework during course
• All inclusive
• Sent to delegates pre course
• Self assessment pre course
• Homework during course
• All inclusive
Some of the course delegate comments….
46
‘’The programme has acted as a springboard for development within our unit. I believe this will have a positive benefit for patients’’
‘’The programme has acted as a springboard for development within our unit. I believe this will have a positive benefit for patients’’
‘’I have enjoyed the three sessions and will go back to share and encourage
staff/patients with a much greater understanding’’
‘’I have enjoyed the three sessions and will go back to share and encourage
staff/patients with a much greater understanding’’
‘’I have learnt some valuable things about
myself as well as patient needs’’
‘’Renewed the existing relationship with my patients
& has made it a more positive one’’
‘’No more groundhog
day!’’
Barriers and successes……What have we learned?
• Key speakers & key topics to maximise learning potential
• Order & method of delivery
• Staffing selection to maximise networking opportunities
• Who to engage first – tiered approach
• Ongoing support in clinical areas
• 6 month review & re-engagement with course colleagues
47
Pilot course September 2011
What staff and patients are saying?
Visit our display area to see:
A Letter From A Patient At York
A Healthcare Support Worker’s Account From Sheffield
What is it like to participate in Shared Haemodialysis Care?
Liz Glidewell, Stephen Boocock, Kelvin Pine; Rebecca
Campbell, Shamila Gill and Martin Wilkie
on behalf of the Yorkshire and Humber Sharing Haemodialysis Care project team
Background
50
Shared haemodialysis care
Empowerment
Satisfaction
Safety
What did we do?
51
Doing less
Doing more
What did we ask about?
How do you think about Shared Care?
What do you do when you come in for haemodialysis?
Why do you do what you do, and how does it affect you?
52
53
What did people talk about?
conditions
identityresources
How do you think about Shared Care?
• Getting rid/reducing the number of nurses
• It’s taking too long• Challenging patient
questions
• Time with patient• Doing what meant to be doing -
ethos• Supporting as a team• Shared on good/bad days• Assistance when needed• No fixed training, relevant to
patient
• Don’t want to know anymore
• Have to do everything• Making us go home
• Health in danger• Not for everybody• Couldn’t put needles in• Come and go• A separate unit
• Contributing towards your care
• Choice as much or as little as you want – no force
• Educated about treatment and disease
• Confident and competent
• Taking back control
Why patients
are involved
Why patients are not
involved
Why staff are not
involved
Why staff are
involved
What do you do now that you’re involved in shared haemodialysis?
•Variability
•Different approaches for different patients
•“let the patient make decisions”•Professional development
•Nurses teaching less experienced staff
•Healthcare assistants teaching nursing staff
•Teaching patients•Working more closely with others
•e.g. dieticians and home care
•Getting to know the patient
•Patient’s pace
•Raise awareness of SHC 55
Not involved?
• I don’t do anything (observations?)
• “I’ll try a bit more” and that’s how it built up
Additiona
l involvement
• Competing to have better outcomes
• Teaching others
Full involvement
• “Home training without going home”
• Going home
Patient views Staff views
Why do you do what you do, and how does it affect you?
56
Knowing what’s happening to my
body
I don’t want to go home I want to stop
here
I want to take control” “some kind of control back over an illness that takes
away so much
it gives you a lot of confidence
your fistula will last longer cause you’re not
going into a different hole each time
It’s a great free feeling
“I want to be in and out” (time)
it’s quite empowering isn’t it to be able to you know, sort yourself out
the infection rate really decreased
confidence teaching staff and patients
Appropriate timing (Before, Starting,
Day-to-day)
How has shared haemodialysis care changed relationships?
57
Knowledge
Understanding
ConfidenceControl
Self-esteem and freedom
Thank-you for listening
AcknowledgementsPatients, carers and health care professionals from Yorkshire and the Humber who have contributed enthusiastically to the Shared Care Dialysis programme; the Yorkshire and Humber Renal Strategy Group; the Berkshire Consultancy, and Leeds Institute of Health Sciences.
The project is funded by the Health Foundation through the Closing the Gap through changing relationships programme and NHS Kidney Care.
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