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

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1 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) May

2 Outline Need for a framework Development process Challenges and tension Content of current framework Lessons learned and next steps

3 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 Lack of integration of knowledge across disciplines 3

4 SMS Roundtable: Vancouver, BC, June 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 4

5 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

6 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 Purpose of framework What versus How 6

7 Tensions Level of Focus Target Population Scope of SMS Nature of Evidence 7

8 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 8

9 Framework Development Process 1st draft March 2010 Thematic analysis from Roundtable transcripts and notes Survey of 12 expert consultants 9

10 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%» Round 2-80%

11 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) Sample Strategies

12 International Review (Dec 2010-April 2011) Invited >450 individuals across multiple countries, sectors & disciplines to be reviewers Encouraged invitees to forward to others Challenging to get European reviewers, success of listservs UK

13 International Review (Dec 2010-April 2011) 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 early stages of qualitative and quantitative analysis release the final framework late Fall

14 Guiding Principles Level of Agreement Q: Do you support these principles in guiding selfmanagement support initiatives at individual, community, and population levels? Principle 8 76% 22% 1% Principle 7 70% 25% 4% Principle 6 77% 18% 3% Principle 5 65% 31% 3% Principle 4 69% 24% 5% Principle 3 78% 18% 2% Principle 2 79% 18% 2% Principle 1 64% 34% 1% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% % Re sp o nse s Strongly Agree Agree Disagree Strongly Disagree

15 Strategic Directions Level of Agreement Strategic Direction 7 77% 21% 1% Strategic Direction 6 77% 20% 3% 0% Strategic Direction 5 75% 23% 2% 0% Strategic Direction 4 78% 21% 1% 0% Strategic Direction 3 77% 23% 1% 0% Strategic Direction 2 76% 23% 1% 0% Strategic Direction 1 74% 24% 1% 0% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% % Responses Strongly agree Agree Disagree Strongly disagree

16 Strategic Direction 1: Support people with CC s & their families to be meaningfully engaged in decision-making, planning, and evaluation of SMS initiatives 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.

17 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 You can use the survey to determine next steps

18 Lessons: Content Simplify, simplify, simplify. Less is more Use non-academic language Dynamic and evolving document

19 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

20 Moving Forward Looking beyond the frame How to measure impact Development of supporting documents Research to build evidence base

21 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 21

22 Moving Forward Community of Practice Groups of people informally bound together by shared expertise & passion for a joint enterprise (Wenger & Snyder, 2000) 22

23 Coming together is a beginning. Keeping together is progress. Working together is success. ~ Henry Ford 23

24 Thank you! Sue Mills

25 Acknowledgements The following organizations provided funding support for the Roundtable and development of the draft Framework: 25

26 Acknowledgements The following organizations provided in-kind contributions for the Roundtable: British Columbia Medical Association; Healthy Heart Society & IMPACT BC; and the Disability Health Resource Network 26

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