This presentation was delivered at People Helping People - The future of public services - 3rd September 2014. For more information on the event visit http://www.nesta.org.uk/event/people-helping-people-future-public-services

1. 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

2. Outline
1.Context
2.RAPSID
3.What worked for the peer support facilitators?
4.Lessons….

3. 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

4. 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

5. 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

6. IDF: Peer Support across the Globe

7. The Coventry Diabetes Study:1984-1989

8. 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.

9. New Zealand

10. 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/fampra/cmp012

11. 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

12. 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

13. Original 14 Grantees
Additional Collaborators
Many thanks to Ed Fisher, Peers for Progress
RAPSID

14. 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
Group support
Control
1:1 only
Group only
Both
RAndomised controlled trial of Peer Support In Diabetes

15. 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.

16. •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

17. 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
Nurse meetings

18. 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

19. 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

20. 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).

21. WHAT WORKED FOR THE PEER SUPPORT FACILITATORS?

22. 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

23. 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).

24. 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.

25. 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.)

26. 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.)

27. LESSONS….

28. 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

29. 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

30. 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.

31. 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

32. 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)

33. September 2014
A new peer support service from Diabetes UK

34. 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.

35. 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.

36. 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.

37. 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.

38. 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.

39. 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.

40. 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.

41. 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.

42. QUESTIONS?
Lucy Inkster Lucy.Inkster@diabetes.org.uk 020 7424 1178

43. Commissioning People Powered Health
Dr Karen Eastman

44. 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

45. 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

46. What is patient activation?
J Hibbard et al, 2009

47. The Patient Activation Measure
(PAM)
Gloria
Manny
Activation Level
Ivey

48. 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

49. 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

50. 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

51. 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

52. 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

53. 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

54. 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

55. Tailored Health Coaching
Improves health
Reduces unwarranted use of services
Increased self management ability

56. 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