James Thomas, Ginny Brunton, Alison O’Mara-Eves EPPI-Centre, Social Science Research Unit,

1. Community engagement strategies to reduce health inequalities: a multi-method systematic review of complex interventions. James Thomas, Ginny Brunton, Alison O’Mara-Eves EPPI-Centre, Social Science Research Unit, Institute of Education, University of London

2. Funding and conflicts of interest • This project was funded by the UK National Institute for Health Research (NIHR) Public Health Research Programme. The views and opinions expressed by authors in this presentation are those of the authors and do not necessarily reflect those of the Public Health Research Programme, NIHR, NHS, or the Department of Health. • This report is in press with Public Health Research. • Project conducted by a team of researchers at the Institute of Education, London School of Economics, and University of East London. All authors declare no conflicts of interest.

3. Project Aims RQ1. What are the range of models and approaches underpinning community engagement? RQ2. What are the mechanisms and contexts through which communities are engaged? RQ3. Which approaches to community engagement are associated with improved health outcomes among disadvantaged groups? How do these approaches lead to improved outcomes? RQ4. Which approaches to community engagement are associated with reductions in inequalities in health? How do these approaches lead to reductions in health inequalities? RQ5. Which types of intervention work best when communities are engaged? RQ6. Is community engagement associated with better outcomes for some groups when compared to others? (In particular, does it work better or less well for children and young people?) RQ7. How do targeted and universal interventions compare in terms of community engagement and their impact on inequalities? RQ8. What are the resource implications of effective approaches to community engagement?

4. Aims of this presentation • What are the theories underpinning community engagement interventions to reduce health inequalities? • How do these relate to the effectiveness (including cost effectiveness) and implementation of such interventions? • How do these findings shape new understandings of community engagement?

5. What is ‘Community Engagement’? Brief: Community engagement for health inequalities = ‘approaches to involve communities in decisions that affect them’… ’…groups with distinct health needs and/or demonstrable health inequalities’ ‘Health inequalities’ = gaps in the quality of the health of different groups of people based on differences in social, economic, and environmental conditions. (Marmot et al. (2010) Fair society, healthy lives: the Marmot review.)

6. Go ask the ‘experts’… “I’m here because I’m interested in getting a good definition of community engagement…” “…Well when you find one let us know” Connected Communities: Communities, Cultures and Health & Well-Being Research Development Workshop (Cardiff, September 2011)

7. Community engagement: Panacea…or Pandora’s box? • Encourages social justice, public accountability and better interventions • Can “give a voice to the voiceless”: those who are socially excluded and disengaged from services • Theory behind recommendations for community engagement often not linked to empirical evidence • Much uncertainty about processes • Fragmented, questionably poor quality evidence base supporting the effectiveness and cost-effectiveness of community

8. Community engagement to reduce inequalities in health: a systematic review

9. Aim of Conceptual Framework (Synthesis 1) • To identify the range of models and approaches underpinning community engagement (CE); and • To identify the mechanisms and contexts through which communities are engaged.

10. Protocol: Community engagement

11. Method of synthesis Previous systematic reviews Analysis Literature searching Conceptual Framework Synthesis Coding Inclusion/exclusion screening Reading key located literature for barriers/facilitators of successful CE

12. Data extraction/synthesis methods • Narrative format • Described the models, context and mechanisms of the participants, interventions and approach to community engagement • Barriers to, and facilitators of, implementation • Taken from the process evaluations using a formally developed tool • Conducted after the tool had been piloted on a sample of studies • Findings from meta-analysis and cost-resource analysis • Iterative ‘drawing together’ of all the above

13. Results: Included studies • In total, 943 located potential systematic reviews elicited a total of 7,506 primary study titles and abstracts. • Searches of other sources provided an additional 1,961 primary study titles and abstracts. • Duplicate removal, retrieval and screening of full-text reports resulted in the final inclusion of 361 reports of 319 studies in the map. • Also purposively selected process-only and background discussion papers that provided key examples of community engagement processes (n=33).

14. Community Engagement in Interventions: Conceptual Framework Community engagement (Health) intervention

15. Community Engagement in Interventions: Conceptual Framework Community engagement Community Participation Definitions Motivations Conditions Actions Impact Community Participation Definitions Motivations Conditions Actions Impact (Health) intervention

16. Community Engagement in Interventions: Conceptual Framework Community engagement Community Participation Definitions Motivations Conditions Actions Impact The public • Populations • With specific needs • Socioeconomically disadvantaged • Communities • Of interests • Of geography • Need/Issue • Felt • Expressed • Comparative • Normative Community Participation Definitions Motivations Conditions Actions Impact (Health) intervention

17. Community Engagement in Interventions: Conceptual Framework Community engagement Community Participation Definitions Motivations Conditions Actions Impact • People engage for: • Personal gains: wealth / health • Community gains • Responsible citizenship • Greater public good / ideology • People invited for: • Ethics and democracy • Better services and • health • Political alliances • Leveraging resources • For intervention design: • Social learning • Social cognitive • Behavioral The public • Populations • With specific needs • Socioeconomically disadvantaged • Communities • Of interests • Of geography • Need/Issue • Felt • Expressed • Comparative • Normative Community Participation Definitions Motivations Conditions Actions Impact (Health) intervention

18. Community Engagement in Interventions: Conceptual Framework Community engagement Community Participation Definitions Motivations Conditions Actions Impact • People engage for: • Personal gains: wealth / health • Community gains • Responsible citizenship • Greater public good / ideology • People invited for: • Ethics and democracy • Better services and • health • Political alliances • Leveraging resources • For intervention design: • Social learning • Social cognitive • Behavioral • Community Engagement in Interventions • Main focus • Secondary focus • Incidental focus • Activity and Extent of Community Engagement • Involved in intervention: • Design • Delivery • Community: • Leading • Collaborating • Consulted • Informed The public • Populations • With specific needs • Socioeconomically disadvantaged • Communities • Of interests • Of geography • Need/Issue • Felt • Expressed • Comparative • Normative Community Participation Definitions Motivations Conditions Actions Impact (Health) intervention

19. Community Engagement in Interventions: Conceptual Framework Community engagement Community Participation Definitions Motivations Conditions Actions Impact • People engage for: • Personal gains: wealth / health • Community gains • Responsible citizenship • Greater public good / ideology • People invited for: • Ethics and democracy • Better services and • health • Political alliances • Leveraging resources • For intervention design: • Social learning • Social cognitive • Behavioral • Community Engagement in Interventions • Main focus • Secondary focus • Incidental focus • Activity and Extent of Community Engagement • Involved in intervention: • Design • Delivery • Community: • Leading • Collaborating • Consulted • Informed • Mediators of • Community Engagement • Communicative competence • Empowerment • Attitudes toward expertise • Context • Sustainability • Context of the ‘outside world’ • Government policy & targets The public • Populations • With specific needs • Socioeconomically disadvantaged • Communities • Of interests • Of geography • Need/Issue • Felt • Expressed • Comparative • Normative Community Participation Definitions Motivations Conditions Actions Impact (Health) intervention

20. Community Engagement in Interventions: Conceptual Framework Community engagement Community Participation Definitions Motivations Conditions Actions Impact • People engage for: • Personal gains: wealth / health • Community gains • Responsible citizenship • Greater public good / ideology • People invited for: • Ethics and democracy • Better services and • health • Political alliances • Leveraging resources • For intervention design: • Social learning • Social cognitive • Behavioral • Community Engagement in Interventions • Main focus • Secondary focus • Incidental focus • Activity and Extent of Community Engagement • Involved in intervention: • Design • Delivery • Community: • Leading • Collaborating • Consulted • Informed • Mediators of • Community Engagement • Communicative competence • Empowerment • Attitudes toward expertise • Context • Sustainability • Context of the ‘outside world’ • Government policy & targets • Process Issues • Collective decision-making • Communication • Training support • Admin support • Frequency • Duration • Timing The public • Populations • With specific needs • Socioeconomically disadvantaged • Interventions • Acceptability • Feasibility • Cost • Communities • Of interests • Of geography • Need/Issue • Felt • Expressed • Comparative • Normative Community Participation Definitions Motivations Conditions Actions Impact (Health) intervention

21. Community Engagement in Interventions: Conceptual Framework Community engagement Community Participation Definitions Motivations Conditions Actions Impact • Community Engagement in Interventions • Main focus • Secondary focus • Incidental focus • Activity and Extent of Community Engagement • Involved in intervention: • Design • Delivery • Community: • Leading • Collaborating • Consulted • Informed • Mediators of • Community Engagement • Communicative competence • Empowerment • Attitudes toward expertise • Context • Sustainability • Context of the ‘outside world’ • Government policy & targets • Process Issues • Collective decision-making • Communication • Training support • Admin support • Frequency • Duration • Timing • Beneficiaries • Direct • Engagees • Indirect • Community • Service providers • Intervention • Government • Researchers • Outcomes • Empowerment • Self-esteem, skills • Social capital • Mutual learning • Attitudes/knowledge • Health • Potential harms • Social exclusion • Cost overrun • Attrition • Dissatisfaction • People engage for: • Personal gains: wealth / health • Community gains • Responsible citizenship • Greater public good / ideology • People invited for: • Ethics and democracy • Better services and • health • Political alliances • Leveraging resources • For intervention design: • Social learning • Social cognitive • Behavioral The public • Populations • With specific needs • Socioeconomically disadvantaged • Interventions • Acceptability • Feasibility • Cost • Communities • Of interests • Of geography • Need/Issue • Felt • Expressed • Comparative • Normative Community Participation Definitions Motivations Conditions Actions Impact (Health) intervention

22. Community Engagement in Interventions: Conceptual Framework Community engagement Community Participation Definitions Motivations Conditions Actions Impact • People engage for: • Personal gains: wealth / health • Community gains • Responsible citizenship • Greater public good / ideology • People invited for: • Ethics and democracy • Better services and • health • Political alliances • Leveraging resources • For intervention design: • Social learning • Social cognitive • Behavioral • Community Engagement in Interventions • Main focus • Secondary focus • Incidental focus • Activity and Extent of Community Engagement • Involved in intervention: • Design • Delivery • Community: • Leading • Collaborating • Consulted • Informed • Mediators of • Community Engagement • Communicative competence • Empowerment • Attitudes toward expertise • Context • Sustainability • Context of the ‘outside world’ • Government policy & targets • Process Issues • Collective decision-making • Communication • Training support • Admin support • Frequency • Duration • Timing • Beneficiaries • Direct • Engagees • Indirect • Community • Service providers • Intervention • Government • Researchers • Outcomes • Empowerment • Self-esteem, skills • Social capital • Mutual learning • Attitudes/knowledge • Health • Potential harms • Social exclusion • Cost overrun • Attrition • Dissatisfaction The public • Populations • With specific needs • Socioeconomically disadvantaged • Interventions • Acceptability • Feasibility • Cost • Communities • Of interests • Of geography • Need/Issue • Felt • Expressed • Comparative • Normative Community Participation Definitions Motivations Conditions Actions Impact (Health) intervention

23. What are the underlying mechanisms/contexts? Utilitarian perspective • Pragmatic • Health systems focused • Those who initiate engagement define ‘the community’ • Underlying mechanism: ‘engagement’ may lead to better design/delivery • Understanding what features of engagement improve effectiveness is critical Social justice perspective • Community empowerment • Democratic right • Power shared/redistributed • Underlying mechanism: if people are ‘signed up’ to the intervention/programme, participation and health improvements more likely • Understanding how and why people ‘sign up’ is critical

24. The issue The literature included in the review did not fall neatly into either one paradigm or the other… Service outcomes Social outcomes Information Health outcomes Consultation The public Participation Peers Empowerment Patients Health improvements Health inequalities Community development Community empowerment

25. Need to bridge utilitarian and social justice rationales for empowerment

26. Unpacking ‘engagement’ 1. Did the community identify the health need? 2. Level of engagement in design • Informed • Consulted • Collaborating • Leading 3. Level of engagement in delivery • Informed • Consulted • Collaborating • Leading

27. Theories of change identified in the theoretical synthesis • Empowerment • Collaboration or consultation in intervention design • Lay-delivery

28. Theory of change for empowerment Change is facilitated where the health need is identified by the community and they mobilise themselves into action. Example: inner-city childhood immunisation initiative

29. Theory of change for collaboration or consultation in intervention design The views of stakeholders are sought with the belief that the intervention will be more appropriate to the participants’ needs as a result. Example: healthy eating intervention

30. Theory of change for lay-delivered interventions Change is believed to be facilitated by the credibility, expertise, or empathy that the community member can bring to the delivery of the intervention. Example: breastfeeding support

31. Outcome types • Health behaviours (n=105) • e.g. breastfeeding, attend cancer screening • Health consequences (n=38) • e.g. mortality, diagnosis • Participant self-efficacy (n=20) • Participant social support (n=7) • Also a small number of community outcomes and ‘engagee’ outcomes – not meta-analysed

32. Statistical significance • Significant statistical heterogeneity was expected in this review • “When operating across such a wide range of topics, populations and intervention approaches, however, there is a disjunction between the conceptual heterogeneity implied by asking broad questions and the methods for analysing statistical variance that are in our ‘toolbox’ for answering them” • Potential confounding variables or interactions amongst variables made it difficult to disentangle unique sources of variance across the studies • Emphasis on magnitude of the effects and trends across studies

33. The results

34. Results: Effectiveness studies (N = 131) Countries • 4% (n = 5) UK • 86% (n = 113) USA • 4% (n = 5) Canada • 6% (n = 8) other OECD Population/Health inequalities • 43% (n = 56) ethnic minorities • 26% (n = 34) low socioeconomic position • 16% (n = 21) multiple health inequalities Age ranges • 60% (n = 79) young people 11-21yrs • 50% (n = 65) adults 22-54yrs Sex • 60% (n = 79) mixed sex • 37% (n = 49) predominantly female • 2% (n = 3) predominantly male

35. Results: Health topic

36. Results: Overall mean effect Variation amongst studies needs to be explained In general, interventions are effective! *** p < .001 Statistical significance indicates the effect size estimate is significantly different from zero Note. 95% CI = 95% confidence interval n = number of effect sizes τ2 = between studies variance

37. Attempts to explain variation • Conducted moderator and regression analyses • Most of the analyses conducted on health behaviour outcomes only because of small number of data points • Not unexpected: none of the variables tested were statistically significant predictors of effect. • Emphasis on trends across the data

38. Moderator of effect on health behaviours: Theory of change

39. Direct comparisons • Most interventions were compared to a comparison condition that differed from the intervention in more ways than just community engagement • For health behaviour outcomes, there were seven studies for which the only difference between the treatment conditions was the presence or absence of community engagement • Analysis did not detect a significant difference between the studies with a direct comparison (effect size = .34) or indirect comparison (effect size = .33)

40. Moderator of effect on health behaviours: Marmot Review themes

41. Other moderators tested • Single component interventions tended to be more effective at improving health behaviours than multiple component interventions • Universal interventions tended to have higher effect size estimates for health behaviour outcomes than targeted interventions.

42. Features of the interventions • Interventions conducted in non-community settings tended to be more effective than those in community settings for health behaviour outcomes. • Interventions that employed skill development or training strategies, or which offered contingent incentives, tended to be more effective than those employing educational strategies for health behaviour outcomes. • Interventions involving peers, community members, or education professionals tended to be more effective than those involving health professionals for health behaviour outcomes. • Shorter interventions tended to be more effective than longer interventions for health behaviour outcomes; this is probably confounded by levels of exposure or intensity of contact with the intervention deliverer.

43. Conclusions • Overall, public health interventions using community engagement strategies for disadvantaged groups are effective in terms of health behaviours, health consequences, participant self-efficacy, and participant perceived social support. • These findings appear to be not due to systematic methodological biases.

44. Conclusions • However, unexplained variation exists amongst the effect sizes • “…the evidence suggests that community engagement in public health is more likely to require a ‘fit for purpose’ rather than ‘one size fits all’ approach.”

45. Conclusions • Strengths • Theories of change helped us to articulate proposed causal mechanisms • Effects were evident despite substantial heterogeneity • Limitations • Broad scope didn’t enable us to identify the ‘active ingredients’ of community engagement (i.e., which components work?) • Lack of direct comparisons mean we don’t know how much of the effect is unique to community engagement • More work to be done to understand more about which components contributed to effectiveness • Different methods of analysis may be required • Theories of change need further development

46. Acknowledgements Co-authors: David McDaid, Sandy Oliver, Josephine Kavanagh, Farah Jamal, TihanaMatosevic, Angela Harden Thanks also to authors of and participants in the reviewed studies EPPI-Centre Social Science Research Unit Institute of Education University of London 18 Woburn Square London WC1H 0NR Tel +44 (0)20 7612 6397 Fax +44 (0)20 7612 6400 Email eppi@ioe.ac.uk Web eppi.ioe.ac.uk/ The protocol of the review is available to download at http://www.phr.nihr.ac.uk/

47. Thank you! James Thomas j.thomas@ioe.ac.uk Ginny Brunton g.brunton@ioe.ac.uk Alison O’Mara-Eves a.omara@ioe.ac.uk