1. Empowering persons suffering from chronic disease Workshop to consider “Tackling the Societal Challenges of Horizon 2020” UASnet Conference 2014 in Copenhagen on October 23rd and 24th Aileen Robertson PhD Public Health Nutritionist & Anne-Le Morville, OT, Ph.D. Metropolitan University College Copenhagen Denmark

2. Horizon 2020 Health Demographic Change and Wellbeing Work Programme FP1..

3. EURO-PREVOB Prevention of Obesity in Europe www.europrevob.eu Improve understanding of determinants of inequalities in obesity; Indentify initiatives that can impact positively on determinants; Develop & pilot tools to assess impact of policies on determinants; Develop, disseminate guides & recommendations for best practice

4. Sustainable Prevention of Obesity through Integrated Strategies http://www.spotlightproject.eu/

5. http://www.euro.who.int/__data/assets/pdf_file/0003/247638/obesity-090514.pdf?ua=1 WHO Collaborating Centre for Global Nutrition & Health Copenhagen EU DG SANCO

6. 1 Inequities in obesity Overweight & obesity in women, by educational status (2009)

7. Finland No differences in men

8. Portugal

9. In general, obesity is rising most in the lowest socioeconomic groups, especially women & children. Adult obesity prevalence in France by household income

10. Interventions have different impacts across social groups Few obesity interventions have been evaluated for their effectiveness in low socioeconomic groups. Education campaigns alone are less effective in low socioeconomic groups and make inequities worse. People from low income groups do not engage well with interventions, and high numbers drop-out. Population-based policies, such as restrictions on marketing to children, likely to have greater impact on inequalities than interventions targeted at individuals.

11. “First do no harm” – well-intentioned interventions can make inequities worse

12. How inequities compound over lifecourse PregnancyAdulthoodHealth problemsChildhood More likely to have high or low birthweight Less likely to be breastfed Poor housing, unreliable means for cooking/ refrigeration More likely to suffer financial hardship from consequences of illness More likely to gain weight during pregnancy & less likely to breast-feed More likely to experience chronic stress More likely to have difficulty affording health care Less likely to be able to get time off work or afford transport to health services More likely to have other health problems made worse by obesity More likely to experience discrimination in health services Low paid, repetitive jobs with inflexible opportunities for physical activity Less likely to be exposed to & develop tastes for variety of foods More likely to live near outlets selling cheap, high energy dense food Less encouragement & social support More likely to experience food insecurity Fewer options for safe outdoor play or active transport Conceived by a woman with poor nutritional status More time spent watching TV & exposure to advertising Mother without access to paid maternity leave

13. Socioeconomic context and position (society) Differential exposures (social and physical environment) Differential health outcomes (individual) Differential vulnerabilities (population group) Differential consequences (individual) Example: Barriers in access to PHC Intervention: Improving uptake of services within primary health care Levels at which health inequities can be addressed within primary health care services

14. Socioeconomic context and position (society) Differential exposures (social and physical environment) Differential health outcomes (individual) Differential vulnerabilities (population group) Differential consequences (individual) Social stigma can disempower & compound marginalisation Intervention: Anti- discrimination policies that are non-judgemental or patronising where professionals demonstrate empathy Levels at which health inequities can be addressed within primary health care services

15. Sustainable Prevention of Obesity through Integrated Strategies http://www.spotlightproject.eu/

16. WP 1 Coordination of SPOTLIGHT WP 2 Individual-level self-regulation determinants WP 3 Obesogenicity of environments WP 4 RE-AIM of multi-level interventions WP 5 Inventory of European community based interventions WP 6 Success- and failure factors for implementation WP 7 Dissemination and take-up of findings WP 8 Data management and data storage Workpackages

17. Work Package 6 OBJECTIVES: 1.To identify determinants of successful adoption and implementation of multilevel intervention approaches in 3 different European countries WHAT WORKS? (Or DOES NOT WORK??) 1.To translate these findings to recommendations for effective public health interventions and ”Best Practice” and DISSEMINATE.

18. Project, provincial town, Denmark

19. Some initial findings Timing of the project clashed with renovation causing half the citizen/target group to move 19 One aim of the project was to find out whether such a huge renovation project can be actively used in a local community project. Whether it was a way to get people to stick together and come up with some common statements and preferences about what they want for the area. This did not happen. (Project Manager) We drowned in the [huge overarching] area renovation project of half a billion kroner. (approx 1 billion Euros) (Project staff )

20. Lack of Needs Assessment & Common Vision 20 What are the needs? We really didn’t know when we started. (Project staff) We cartwheel around the place, because as project manager and staff we really do not know what we want and which goals we are aiming for (Manager) It is a little like "now we work a little here, and then we work a little here" and there are no goals or vision, no overview of what we’re doing (Close partner)

21. Poor Communication and Cooperation 21 We‘ve been talking for half-a-year now and the great directors ………….have not even been able to figure out how to work together yet! (Project staff) For cooperation to function, that's a challenge! And... Had it been two other personalities, it might have gone differently, but our close partner and project manager have had difficulty working with each other (Project staff)... what exactly went wrong...? Something in relation to project management.... There is constantly some 'twist' between our close partner and project manager (Project staff) No money has been allocated.., that is, we are dependent on others without offering anything in return…………. (Project manager)

22. Unable to Reach those most difficult to reach (and those most in need) 22 [the citizens] have not asked us to come. It's not their desire. It is a project by the authorities for politicians..who thought it was a really good idea, and something they wanted …. (Project Manager) In relation to the families I work with, they have other issues to deal with and these are so overwhelming and take up so much time and energy that [project activities] are of no interest. [...] The most affected families are not reached (External Partner) When some resident join activities others deliberately stay away: The problem is that the same 8-10 people take part in all the activities! This should never have been ! (Close partner)

23. Interesting statement ’They have other issues to deal with and these are so overwhelming and take up so much time and energy that [project activities] are of no interest.’

24. Daily life includes all the activities and ’issues that one has to deal with’ The ’issues’ structures use of time and space - And makes it difficult to participate in our intervention

25. ’other issues to deal with and these are so overwhelming’  Lack of accessibility  Limitations due to illness, disease or legal/structural factors  Problems with friends or family

26. What happens when there is an overwhelming amout of issues to be dealt with and maybe even a lack of activities in daily life? Quality of life decreases Physical activities decreases Social activities decreases Passive activities increases - boredom, lack of control and subsequent increase in disease

27. How do we prevent this? What are the daily issues that are of importance to the user? Only the user knows …

28. The aim of an intervention  To enhance wellbeing, empowerment and self- management  Find durable solutions to ’issues’ in everyday life  Use welfare technology  Focus on self-management and patient engagement  Manage the symptoms, treatment, physical and psychosocial consequences and lifestyle

29. A technical solution: An app Engagement and self management through peer- groups:  Peer to peer discussions and ideas for managing disease in daily life  Taking part in peer-groups without the need for physical presence  Independent from health care professionals  Independent interaction  Follows the needs of the group members  Easier access to health care providers

30. Our assumptions  Empowerment through experiencing personal growth as a result of developing skills and abilities  The peer-to-peer relation has a positive influence on how to handle and structure daily life (self-management)  Mutually committing peer setting will increase the possibility for sustainable outcomes  Enhanced well-being, empowerment and self-management will result in a better and timelier use of the health care services

31. Daily life issues More satisfying activities = ideas for how to structure daily life, including health enhancing activities Social activities increases = ideas/solutions to get outdoors and participate in social activities Passive activities decreases = More satisfying activities enhances motivation for new activities

32. Appoint Group Leader to manage discussion & time and Rapportuer to report back Task………. Basis for 2020 Horizon Call 2016/2017 – Reduce Inequalities within EU: Design & test novel approaches to better empower clients & reach difficult-to-reach (e.g. avoid ”blaming the victim”, being judgemental, exacerbating stigma) Consider changes in current approaches to reach H2020 demand for ”Excellence, Impact & Implementation” -Working environment – (e.g. Not accessible; or available when needed; friendly & inviting?) 6 minutes -Approach as professionals (e.g. too ”professsional”; dispower by being ”judgemental”, not empathetic) 6 minutes -Professional tools – (e.g. change out-dated technology?) 6 minutes -SME´s – 3 minutes Feedback and conclusion – 20 minutes Group Work – 30 minutes