Advancing the field: Developing a Framework for Chronic Condition Self-management Support

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Advancing the field: Developing a

Framework for Chronic Condition

Self-management Support

Sue Mills, PhD, Teresa Brady, PhD, Peter Sargious, MD, Shabnam Ziabakhsh, PhD, Janaki Jayanthan, MPH(c)

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Outline

• Need for a framework

• Development process

• Challenges and tension

• Content of current framework

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Why do we need a framework?

• Rapid proliferation in SM-related research, policies & programs

• Gaps in exchange of evidence between research, policy & practice

• Potential risks individual & population levels

• Insufficient exchange of knowledge & experience across oceans

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SMS Roundtable: Vancouver,

BC, June 2009

• 23 policymakers, health care practitioners, consumers & researchers - Canada, Australia, New Zealand, UK & US

• Goal: share knowledge and developing a vision for advancing SMS knowledge across disciplines, sectors & countries

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Shared Values & Perspectives

• Situate SM in a broader systems perspective

• Go beyond health care centred view to include community & social systems

• Bring needs of disadvantaged groups & equity issues to the forefront of discourses

• Bring SDH lens – recognition of the role of gender, ethnicity, SES and other SDHs in influencing &

constraining self-management behaviour

• Challenge the emphasis on individual responsibility – shift towards understandings of shared responsibility

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Challenges

Finding common understandings with:

• Different professional roles & disciplinary perspectives

• Differences in health care & social structures & systems across our respective countries

• Different use of words, meanings

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Tensions

• Level of Focus

• Target Population

• Scope of SMS

• Nature of Evidence

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Strategic Framework

• Based on expert opinion & knowledge

• Build common vision & language

• Guide for decision makers to advance the

SMS field

• Stimulate the development of innovative

practices and evidence

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Framework Development

Process

1st draft – March 2010

• Thematic analysis from Roundtable

transcripts and notes

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Framework Development

Process

2nd & 3rd Drafts (Apr-Sept 2010)

• 2 rounds of E- consultation with RT

participants (Survey Monkey):

Modified Delphi process Response Rate

» Round 1 - 82%

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Framework

• Collective vision

• 8 guiding principles

– evidence informed, person & family centred, ethics, integrated in CDM and across continuum of services)

• 7 strategic directions

– patient engagement, reach and range of services, developing evidence, improving quality of services, linkages between sectors & services, leadership, infrastructure)

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International Review

(Dec 2010-April 2011)

• Invited >450 individuals across multiple

countries, sectors & disciplines to be

“reviewers”

• Encouraged invitees to forward email to

others

• Challenging to get European reviewers,

success of listservs UK

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• 194 responses through Survey Monkey

16 countries

Canada 61, UK 45, Australia 31, US 21, New Zealand 9, Sweden 5, Netherlands 4, Norway 2, Switzerland 2, Austria 2, Brazil 1, Denmark 1, Germany 1, Israel 1,

Singapore 1, Spain 1,

Policymakers, health care providers, program managers/ directors, program

planners, patients, advocates & patient group representatives, researchers, educators

• 9 responses provided through e-mail

• early stages of qualitative and quantitative analysis

• release the final framework late Fall 2011

International Review

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Guiding Principles

Level of Agreement

Q: Do you support these principles in guiding

self-management support initiatives at individual, community, and population levels? 64% 79% 78% 69% 65% 77% 70% 76% 34% 18% 18% 24% 31% 18% 25% 1% 2% 2% 5% 3% 3% 4% 1% 22% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Principle 1 Principle 2 Principle 3 Principle 4 Principle 5 Principle 6 Principle 7 Principle 8 % R e sp o nse s

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Strategic Directions

Level of Agreement

74% 76% 77% 78% 75% 77% 77% 24% 23% 23% 21% 23% 20% 21% 1% 1% 1% 1% 2% 1% 0% 0% 0% 0% 0% 0% 1% 3% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Strategic Direction 1 Strategic Direction 2 Strategic Direction 3 Strategic Direction 4 Strategic Direction 5 Strategic Direction 6 Strategic Direction 7 % Responses

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Strategic Direction 1:

“Not sure what you mean "... to support those who struggle to benefit from SMS". How are they struggling? From the condition, from the lack of access, lack of SMS initiatives? With more clarity I might "strongly" agree.”

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Support people with CC’s & their families to be meaningfully engaged in decision-making, planning, and evaluation of SMS initiatives

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Lessons:

Methods

• E-technology is an efficient way to engage in a collaborative process

• E-surveys can be a very effective method of knowledge exchange

• E-surveys can help to build a community of practice

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Lessons:

Content

• Simplify, simplify, simplify …. Less is more

• Use non-academic language …

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Lessons:

Collaborative Process

• Can’t please everyone …

• Tensions can be opportunities to push thinking

forward

• You need buy in from some leaders in the field

• Asking people to be “reviewers” is a powerful

way to bring them into the process & build

bridges … build CoP

• Very exciting & fast way to learn about other

initiatives …

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Moving Forward

Looking beyond the frame …

• How to measure impact

• Development of supporting documents

• Research to build evidence base

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Moving Forward

Looking beyond the frame …

Developing supporting documents

• Bibliography of research that relates to strategic directions • List of potential implementation theories & approaches • Case studies of effective SMS approaches in local

contexts, best practices

Engaging in collaborative & international research

• Syntheses of evidence (systematic and realist) • Development of multi-level interventions

Stimulus for national collaboration

• Linking into other Canadian initiatives – national evaluation framework for SMS • Collaborative research, network grant

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Moving Forward

Community of Practice

“Groups of people informally bound together by shared

expertise & passion for a joint enterprise“ (Wenger & Snyder, 2000)

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“Coming together is a beginning.

Keeping together is progress.

Working together is success.”

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Thank you!

Sue Mills

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Acknowledgements

The following organizations provided funding support for the Roundtable and development of the draft Framework:

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British Columbia Medical Association; Healthy Heart Society & IMPACT BC; and the Disability Health Resource Network

The following organizations provided in-kind contributions for the Roundtable: