Delivering better health services through community collaboration

1. Delivering better health services through community collaboration Jane Farmer, La Trobe University Amy Nimegeer, Stirling University (La Trobe University Visiting Fellow)

2. Outline • What’s /Who’s your community? • Why do community/consumer participation? • Example Remote Service Futures • Prioritising health services • Designing a workforce model • What happens in CP • Group interaction • Other examples • Q&A • Future

3. Who is the community in health?Different knowledges & different languages Their job Their community Clinical pradigm practitioners managers citizens Contextual Local Personal Dealing in stereotypes Knowledge driven by media & TV Statistics Areas Legislation Regulation Registration Keeping out of the media Want to get (re)elected Getting good media politicians

4. CP = A conversation between different knowledges practitioners managers citizens Evidence Examples A Broker? politicians

5. Why do community/consumer participation?

6. National Standards • Standard 2: Partnering with Consumers • Partnership in service planning • Partnership in designing care • Partnership in service measurement & evaluation • Governance structures • Mechanisms • Actively involved in decisions making • Training for managers on how to create and sustain partnerships….

7. HWA Leadership Competencies • Leads self, engages others, achieves outcomes, drives innovation • SHAPES SYSTEMS – APPLIES SYSTEMS THINKING • Engages and enables consumers and communities (involves consumers and communities in decision-making, health policy, education and training and healthcare redesign) • Builds coalitions across silos, organisations and sectors

8. Arnstein’s ladder of Participation Arnstein (1969) Journal of the American Planning Association

9. Possible Outcomes – we think • More acceptable decisions • Community shaped them • More realistic plans & designs/ innovation • Based on context & evidence • Health literacy/ health systems literacy • More likely implementation • Community will fight for it • Greater democratic involvement/civic literacy • Frugality?

10. Evidence base for CP? • Perceived benefits for physical, psychosocial health & wellbeing • Social outcomes for disadvantaged groups • Others experienced negative consequences • Depends on the individual & nature of the intervention • Tokenism/limiting to consultation only/not acting on information ->negative consequences • Failure of practice to match promise -> negative Attree et al (2011) Health & Social Care in the Community

11. Evidence base for CP? • Mixed evidence re social capital building • Partnership working • Extends reach of included views • Empowerment re further civic engagement Milton et al (2012) Community Development Journal • Awareness of Health Services • Learning new skills – community members • New & strengthened relationships Kenny et al (2013) BMC Health Services Research

12. Remote Service Futures: Involving citizens in service design

13. Scottish Highlands & Islands

14. In a situation of protest & suspicion about changing service delivery models

15. Goals were: • Design an effective, cheap, do-able methodof community participation • The method is designed to develop new workforce / service delivery models • Designs are ‘hypothetical’

16. Remote Service Futures Project 2 year project: 4 remote communities: 2 islands, 2 peninsulas (partnership with NHS Highland & Regional Development Agency) Ways of providing services Priorities & Planning Needs Skills People & Enablers Budget Self-care/volunteering Aspirations, Assets & Wants Budget Telehealth Remote, rural community Nursing models First responders Help-lines etc

17. Workshop Process

18. Communities had similar health & wants/priorities • Key Local Health Issues • Conditions associated with smoking • Associated with obesity • High blood pressure • Mental health • Key wants • Locally resident practitioners • How to deal with types of emergencies • Older people – anticipatory care • Improve local health (through volunteering/leadership)

19. RSF Game • Form community/manager groups • Establish Community priorities of need (incl. assessed) • Use Skill Strips to decide which skills would address needs • Using anonymous practitioner cards, consider who has the needed skills • Using approximated budget, create service plans • Groups then report back to whole and justify plans

20. Design Outcomes D A B C 1 GP 2 pt nurses 1 GP 1 pt nurse pt carers -GP in next village (50mins) -Peripatetic nursing team GP in next village (50mins) -2 local ft nurses before 1 GP pt nurse 3 pt carers -1 nurse practitioner -healthcare assistant -pt Intensive home carer -community volunteers -volunteer first responders New local practitioner with these skills: -health emergencies -social caring -leading community health -volunteering Low attendance at final workshop after Telehealth Volunteering Information Mobile phones

21. ? Reasons for differing engagement & innovation • A = exerting power -> no absolute threat, island • B = split community, island -> security & sustainability of community fears • C = fed up with current peripatetic model • D = young people, external and modern ideas, health service connections

22. Process outcomes • Health system literacy • What there is, when to use it • Who to approach • What to expect • How much it costs • “…I had no idea, when I had my accident, it cost £9,000 for the helicopter to pick me up!” • “…it made me feel like I was managing the health service…it made me realise how complex it is…” • Satisfaction and trust • Managers’ ‘contextual’ or ‘community literacy’ increased

23. Issues with the Scottish Study • Inclusion • Sustainability • Scalability over regions and/or larger communities • When/how is a community decision made? • The role of the mediator/broker – essential? • Changing structures • Democracy too far? Health services had trouble with changing • Communities are not homogeneous unities – • Heterogeneous disunities!

24. Working with Scottish rural communities • Challenges around unhelpful categorisations • People acting as gatekeepers • Being told to go away! • When do you disengage? • Remoteness also a challenge for engagement (getting people around the table) • Biggest challenge was actually with the health care staff! Have to be willing to implement.

25. Any actual change outcomes • It was meant to be a hypothetical project but led to some community mobilisation • What actually happened as a result • One community started a CFR scheme • One designed a new hybrid health care role which will be taken forward but not in partnership with community • Triage flowchart • Change in NHS Practice, incorporated into guidelines

26. Audience Participation • Turn to your colleague & discuss: • What community participation have you done & what for? • Identify a key project for which you’d like to use community participation? • Why do you think community participation is important for that project? • We’ll pick on people to report back

27. Other examples

28. Community co-production - older people as a positive force, doing things for communities, doing things for themselves

29. Process of O4O social organisation creation • Meet community • Publicity • Generate confidence/ enthusiasm Community Action Community identify needs • Support from Project: • Building capacity • Building confidence • Accessing finance • Accessing information Community engage in O4O concept • Discussion with community • Building trust Initiatives selected to take forward Community action/ entrepreneurship Social organisation model established • Skills needed • Community capacity • Models of social organisation • Business planning • Resources • Training - Community takes on roles O4O delivers services

30. Services • Highland…. • Transport scheme • Community Care Assynt • Village hub (following heritage DVD) • Community DIY scheme (failed!) Real & Tangible • Lulea, Sweden…. • School + older people facility • Village helper • IT training scheme • Greenland…. • Working groups established with individual communities • to do activities for/with older people • Karelia, Finland…. • Examined formal volunteering & tried to transfer to other • communities • N.Ireland…. • Supporting existing voluntary groups to become more socially enterprising Less Tangible

31. Warracknabeal Rural NorthWest Larger communities require adaptations to the process? RSF in Rural Victoria Rochester Heathcote

32. NHMRC funded – Population Health Planning Method for Rural Medicare Locals: oral/dental health (2014-17) • 6 rural communities – Vic & Qld • Rural has poorer oral/dental health • Method to involved community members in designing local oral/dental health service • Priority-setting, budget • Partners: state dental health services, RFDS • & engage Aboriginal associations

33. Thinking beyond workforceplanning… Designing public health interventions that work for YOUR community of users: • NHS Forth Valley – cardiac rehab and staff services • Working with children to design public health games (smoking awareness) • NHS Forth Valley and Stirling University working with socially disadvantaged women and Carlton Bingo to design public health interventions that could take place at the Bingo Hall

34. Participation is the new paradigm • Crowdsourcing • For funds • For research subjects • For research helpers/ community participative research

35. Overall thoughts, conclusions & lessons • It is hard to do this well! • Put some parameters around what you are trying to do • What is the project, what are the outputs, focus? • Ongoing or project-based? • Community=stakeholders • Be adaptive • They can design pretty cool & innovative things -> are you ready to implement them?

36. Overall Conclusions, continued. • Community members know as much as you, it’s just a different kind of knowledge • You need to work together to create a new kind of knowledge: one that combines evidence based decision making with narrative and experiential understanding • Community participation should change and educate YOU as much as it should the community participants • Solutions designed with service users can be more context-appropriate and embedded than those arrived at unilaterally

37. Jane Farmer La Trobe Rural Health School Bendigo-Shepparton-Mildura-Wodonga j.farmer@latrobe.edu.au