PEOPLE HELPING PEOPLE: THE FUTURE

OF PUBLIC SERVICES

3 SEPTEMBER 2014

Lessons from RAPSID

(RAndomised controlled trial of Peer Support in Diabetes)

David Simmons, Diabetes Consultant

Cambridge University Hospitals

Co-PI Jonathan Graffy, University of Cambridge

.

Research for Patient Benefit scheme

Outline

1. Context

2. RAPSID

3. What worked for the peer support facilitators?

4. Lessons….

Peer Support-What is it

Ive got to pick up my

prescription from the chemist

but my car’s broken down

I’ve got to go as

well, why don’t we

go together

Practical

support

Drawing by Ben Simmons

Peer Support-What is it

Im a bit worried about

my appt next week-Ive

been too busy to test

Why don’t you do some

tests from now-at least

you’ll have something

Sensible

Advice

+adherence

support

Drawing by Ben Simmons

Peer Support-What is it Professor X said I might lose my

foot

Im sure you’re in good hands

Emotional

support

Drawing by Ben Simmons

IDF: Peer Support across the Globe

The Coventry Diabetes Study:1984-1989

Coventry Asian Diabetes Support Group

• Steering Group set up by member of the local Council Ethnic Minority Development Unit with CDS support

• First meeting 1987 • All SA with known DM in Foleshill invited

• In Punjabi • Attendance 15-50

• Purpose • To educate-invited

speakers and videos

• To provide mutual support

• To share information relating to diabetes

• To form the basis of a social group

• Invited speakers • Eg eye, feet, food

• Discussion

• 30 minutes social

• Some social events

•Simmons D. Diabetes self help facilitated by local diabetes research: The Coventry Asian

Diabetes Support Group. Diabet Med. 1992;9:866-869.

New Zealand

Rural

marae

support

group

Support

groups

Urban

marae/3

church

based/1

town based

Simmons D

et al. The

New Zealand

Experience in

Peer Support

Interventions.

Fam Prac

2009;

doi:10.1093/f

ampra/cmp0

12

The SADP support groups

•10 nurse led groups originally

• 5 survived

•Tension between experiential knowledge of group members and the professional knowledge of the nurse leader

•Group self-determination

•No outcomes evaluation

Simmons D et al. The New Zealand Experience in Peer Support Interventions. Fam Prac 2009;

doi:10.1093/fampra/cmp012

Inappropriate care/education

Group pressure

Prejudice

Poor public awareness

Poor family support

Family demands

Unsupportive macro environment

Communication

Poor cultural messages

Barriers to diabetes care:

Psychosocial/Psychological

Simmons et al Diabetic Med 1998; 15:958-964; Simmons et al Diabetes Care 2007;30:490-5

Health beliefs

Self factors-motivation/self efficacy

No symptom cue

Priority setting

Time as a barrier

Emotional

Precontemplative

Psychological Psychosocial

Internal

Physical

External

Physical

Educational

Patient

Original 14 Grantees

Additional Collaborators

Many thanks to Ed Fisher, Peers for Progress

RAPSID

Research Question:

Can peer support, delivered as a group

and/or individual intervention, enable

people with diabetes and improve their

health?

Outcomes:

HbA1c

Secondary: (BP, weight, waist, lipids)

Psychosocial: (Depression (PHQ8),

Self-efficacy, Quality of Life (EQ5D)

2 x 2 factorial design

1:1 peer support G

roup su

pport

Control 1:1 only

Group only

Both

RAndomised controlled trial of

Peer Support In Diabetes

RAPSID Intervention

•Standardization by function, not content1

• Barriers to care to be discussed

• Assist in managing diabetes in daily life

• Social and emotional support

• Ongoing support

• Non-directive/Motivational approaches

• Community Action not Health Service based

• Link to clinical care through RAPSID Nurse

(1) Hawe et al. British Medical Journal 328:1561-1563, 2004.

• 21% responded with

barriers to diabetes

care

• 15% opted in to trial

• Peer supporters

selected by general

practice

Pilot study in 4 practices

Main changes for trial:

•Emphasis changed to “peer support facilitator” (PSF)

•PSF Recruitment from amongst the participants rather than general practice recommendation

•Baseline education for all before PSF training

Simmons D, Cohn S, Bunn C, Birch K, Donald S, Paddison C, Ward C, Robins P, Prevost AT, Graffy J. Testing a peer

support intervention for people with type 2 diabetes: a pilot for a randomised controlled trial. BMC Family Practice

2013, 14:5. DOI: 10.1186/1471-2296-14-5. URL: http://www.biomedcentral.com/1471-2296/14/5

Trial process & selecting PSFs

Invitation from practice (+ community posters)

Consent, baseline questionnaire, measures

Education session

Clusters randomised (blocks of 4)

Intervention phase

(group; 1:1; combined; control)

Midpoint questionnaire (4-6 mths)

Endpoint measures, questionnaire (8-12 mths)

PSF selection

&

training

Nu

rse

me

etin

gs

PSF selection & training:

Initial interest in role

(30-50%)

Observe at consent

and education

Nurse visit

To discuss

GP reference,

CRB, contract

2 days training (by intervention)

incl Motivational Interviewing

Group management

Confidentiality

Criteria:

Basic knowledge

People you would

get on with

Flexibility

Non-judgemental

Sensible

T2DM > 1 year

Trial participation:

• 21,961 invited. 2,028 expressed interest in participating

(~10%).

• 1,299 randomised (130 clusters)

• 167 trained as PSFs (127 became active)

• Follow-up was high:

• Questionnaire: 72.2% intervention; 81.7% control

• HbA1c measure: 79.9% intervention; 87.9% control

Peer support facilitators

• More men (65.3% vs 59.9%) and younger (63.5 vs. 65.0),

compared with peers. (More men dropped out).

• High in perspective-taking (9.62) and empathetic concern

(9.16) (Davis Empathy Scale)

• High in agreeableness (60.43) and consciousness

(58.04) (Big Five Mini-Markers)

• Motivated primarily by altruistic concern for others (4.60),

and desire to exercise knowledge and skills (4.22)

(Volunteer Functions Inventory).

WHAT WORKED FOR THE PEER

SUPPORT FACILITATORS?

Qualitative study of PSF experiences:

What worked for them?

1. Peer Support Facilitators’ evaluation reports

2. RAPSID nurse evaluation reports

3. End of study focus groups: (8 groups; 63 PSFs)

Thanks to Dan Holman for his work on this

1/4 Peer supporter characteristics

• Successful facilitators were good at listening,

empathetic, confident but did not overplay their

knowledge, community-spirited & interested in

others.

• Lack of confidence was a problem for some.

(Initial obstacle was contacting their list of peers).

• Some were overbearing or did not listen enough.

• Those with a professional background had often

run groups before (teachers, counsellors &

business people).

2/4 Peer characteristics

• Some peers expected clinical input, and dropped

out when their expectations were not met.

• Some seemed motivated mainly by the social

aspect of the groups.

• Low peer interest was a recurring problem.

• Other issues affected participation including

health problems, bereavement and caring roles.

3/4 Relationships and the groups

• Groups were locally based, aiding familiarity.

However, participants varied in their demographic

characteristics, motivations and illness.

• Some saw differences as an obstacle; others as

an opportunity for learning.

• The greater the differences between people, the

more important facilitation skills were.

• How facilitators complemented each other was

crucial. (Eg one being better at emotional

aspects, while another took care of organisation.)

4/4 Process factors

• The training enabled PSFs to establish

relationships with colleagues.

• Materials were useful prompts (curriculum, local

information and barriers survey results).

• External speakers maintained interest (dietician).

• Some groups ended early because attendees got

what they wanted (affirmation they were doing OK)

• Social and emotional support grew as people got to

know each other

• How to end groups (if personal circumstances

changed or it was not working well.)

LESSONS….

So what is peer support?

Simmons D, Bunn C, Cohn S, Graffy JP. What is the idea behind peer to peer support in diabetes?

Diabetes Management 2013; 3:61-70

So what is peer support?

Simmons D, Bunn C, Cohn S, Graffy JP. What is the idea behind peer to peer support in diabetes?

Diabetes Management 2013; 3:61-70

RAPSID PSF

Maori/PI CHW

Norwich Peer

Aboriginal CHW

HK/SF Peer/IoW

Support Groups

Lessons in running support sessions

1.Start well: Find out people’s expectations and

whether they can be met.

2.Have more than one facilitator per group:

Discuss how facilitators will work together.

3.Plan sessions & timing: Schedules should fit

retirement/work commitments. Agenda and

materials aid discussion. External speakers

maintain interest.

4.Be flexible: Adapt to peers’ circumstances. Cover

core subjects but let discussion range. Balance

formal and informal styles.

Powerful link with social action

That we know of……

• Major push to continue with peer support in several

areas

• Establishment of local physical activity groups

• Several PSF’s joined practice patient advisory groups

and actively promoted enhanced care

• Linkage with wider social support eg volunteer support

for the elderly

Thanks to

In UK#1

• Mike Powell, Gillian Llewando Hundt, Ajmer Bains and the CDS team

In NZ

• Sir John Scott, Dr David Scott, Betty Hunapo, The SADP/DPT team/Trustees over the years; Judy Voyle, Barbara Gatland, Pam Tregonning, Carole Fleming, Judith Dee, Lisi Leakehe

Various sponsors/funders especially Diabetes UK, the HFA, HRC, AMRF, Roche Diagnostics, Squibb, Servier, Eli Lilly, Novo Nordisk, M/P Paykel Trust, AMP Society, Peers for Progress, Takeda

In UK#2

• RAPSID team-Jonathan Graffy,

Chris Bunn, Simon Cohn, Toby

Prevost, Charlotte Paddison,

Dan Holman, Caroline Taylor,

Kim Mercer, Kym Birch

• WDEC esp Jan Myring, Candice

Ward, Sarah Donald, Katy

Davenport, Barbara Bewley,

Michaela Wilson, diabetes

dietitians, DSNs

• MRC-Nick Wareham

• Primary Care Research Network

(Brenda) /Diabetes Research

Network (Sandra)

September 2014

A new peer support service from Diabetes UK

Context

• Diabetes affects 7% of the population, absorbs more

than 10% NHS costs and is growing rapidly.

• Diabetes is a life-long condition where self care is

exceptionally important for mortality, complications

and wellbeing.

• Currently, significant numbers of people living with

diabetes do not engage with their diabetes. People

with diabetes often struggle to access the support

they need to best manage their condition.

Why Peer Support

• Peer support has the potential to play a

significant role in supporting people to look after

themselves, increasing their knowledge and

confidence to better manage their condition.

• One of the key building blocks of the House of

Care is that people are more engaged in their

own care and know what services they should

access, meeting their own individual needs.

Overview of Service

• Working with the original RAPSID team, Diabetes UK has developed an innovative, cost saving peer support service to help prevent diabetes related complications.

• The new programme follows the successful RAPSID trial, which significantly improved the average blood pressure of the 1,299 participants and helped reduce the psychological impact of diabetes.

• Funded by Nesta/the Cabinet Office’s Centre for Social Action Innovation Fund, the new service builds on these impressive results, with an added education element.

Clinical Trial Results

• One of the largest Randomised Controlled Trials ever conducted around peer support in diabetes, led by Profession David Simmons (Cambridge University Hospitals).

• People living with Type 2 diabetes in and around Cambridgeshire were invited by their GP or Practice Nurse to participate as either a ‘peer’ or ‘peer support facilitator’ (PSF) in monthly group meetings held over a 8-12 month period.

• Top line findings show significant improvements in blood pressure, a key determinant of stroke and heart attacks, which is likely to lead to 2-4% reductions in mortality.

How will the pilot service work?

• Diabetes UK is working with 8 partner CCGs to launch the new service.

• We anticipate establishing 25 groups in each CCG, with an average of 24-30 members per group, 8-10 regular attendees.

• We will be training volunteers to lead and facilitate these local groups and we will be recruiting Diabetes Specialist Educators to provide support to volunteers and to influence local healthcare professionals to refer their Type 2 patients to the service.

• Monthly peer support meetings will be held for 8-12 months in each area.

• Each group will be supported by 2 Peer Support Facilitators (PSFs). PSFs will be trained to be non-directive, taking the role of facilitator and signposter.

• Meetings will include a 20 minute education module relating to a key diabetes issue.

Pilot Service continued

• Discussion at meetings will centre around: 1. How to address barriers to care/practical issues arising from

living with diabetes;

2. Social and emotional aspects of diabetes;

3. Health care received.

• Twice a year, the Diabetes Specialist Educator will attend meetings, delivering an ‘Ask the Expert’ session.

• Meetings will be supported by a range of Diabetes UK clinically developed, education materials.

• We are seeking to reach 5,000 people living with Type 2 diabetes in the Eastern and Midlands regions by December 2015.

Benefits

• If successful, we believe this programme could provide a model that could eventually be rolled out by the NHS and be instrumental in improving people’s psychological and physical health, thereby making a long-term positive impact on a national scale.

• Pilot outcomes: – Improved health outcomes for people with Type 2 diabetes, lower BP

will decrease the risk of heart attacks, strokes and other diabetes related complications.

– Potential cost saving to CCG of over £30,000.

– Increased in uptake of local Type 2 structured education provision.

– Improved quality of life, building confidence, knowledge and self efficacy.

– Provision of an ongoing support network in local area.

Next steps

• We are finalising partnerships with 8 CCGs to

commit £10,000 funding, with a view to the

service running from now until September 2015.

• We are launching the service in our first 4 CCGs

from October 2014, with recruitment already well

underway.

QUESTIONS?

Lucy Inkster Lucy.Inkster@diabetes.org.uk 020 7424 1178

Commissioning

People Powered

Health

Dr Karen Eastman

What we know

60-70% of premature deaths are caused by behaviors that can be changed

25-40% of the population have the lowest level of activation – they are the least likely to adopt healthy behaviors and access healthcare

When people start to feel in control they do many things differently

Need for change

Shift

• We need a paradigm shift from paternalistic care to “What’s important to me”

• from provider as the expert to the person as the expert

Change

• When activation changes multiple behaviours change

• e.g. reduced smoking, weight loss, increased medication compliance, increased screening attendance, reduced A&E attendance, reduced hospital admissions

Motivate • When people experience success their motivation improves

What is patient activation?

J Hibbard et al, 2009

The Patient Activation Measure

(PAM) Gloria

Manny

Activation Level

Ivey

What makes our approach

different?

Our health coaches will reach out to people with any long term condition to empower them to build the knowledge, skills and confidence to self manage

They will use motivational interviewing techniques to identify what’s important to that person, not what we think is important for them. They will help them to make informed choices and support achievement of personal goals.

We will tailor our approach to people according to their different levels of activation, using the PAM

Why is a tailored approach using

PAM important? Many of the behaviors we are asking of people are

only done by those in highest level of activation

Higher activated individuals are more likely to engage in positive health behaviors, to have better health outcomes and better care experiences

When we focus on the more complex and difficult behaviors– we discourage the least activated

Use activation level to determine what are realistic “next steps” for individuals to take

Start with behaviors more feasible for patients to take on, this nourishes an individual’s opportunity to experience success

Horsham and Mid Sussex CCG

Tailored Health Coaching Service

Tailored health

coaching

Primary care

Proactive care

Social services – housing/

finance/

benefits

Voluntary services

Education/

Information Local wellbeing

service

Psychological support

Personal health

budgets

Carers support

Support groups

Outcomes

Hibbard, J, Green, J, Tusler, M. Improving the Outcomes of Disease Management by Tailoring Care to the Patient’s Level of Activation. The American Journal of Managed Care, V.15, 6. June 2009

Clinical Indicators*

Medications: intervention group increased adherence to recommended immunizations and drug regimens to a greater degree than the control group. This included getting influenza vaccine.

Blood Pressure: Intervention group had a significantly greater drop in diastolic as compared to control group.

LDL: Intervention group had a significantly greater reduction in LDL, as compared to the control group.

A1c: Both intervention and control showed improvements in A1c.

*Using repeated measures, and controlling for baseline measures

Activation levels

The least activated people make the most

gains when appropriately supported

There is a 31% reduction in spend for

those who stay in high activation

compared to low activation over 1 year

What’s important to you?

• Our Engagement Events for people with

LTCs raised gaps particularly around peer

support opportunities

• It also revealed assets within our

communities, those keen to coordinate

and promote these opportunities, however

needed support to get started

Activating Communities

• Commission a new Service from the

Community and Voluntary Sector

• Joint working with our communities and

County, District, Town, Parish Councils

• Recruit Co-ordinators

• Develop Peer Support Volunteering

• Establish Time and Skills Banks

• Identify and encourage Community

Champions

Tailored Health Coaching

Improves health

Reduces unwarranted

use of services

Increased self management

ability

One last thought….

“Paternalism breeds dependency, encourages

passivity and undermines people’s capacity to

look after themselves.

It may appear benign, comfortable and

reassuring but is a hazard to health.”

Angela Coulter 2011