Unveiling participation of ethnic minorities and other stakeholders in health research decision- making in Ireland Roura M 1, Bradley C 2, Hannigan A 1, Basogomba A 3, Adshead M 1, LeMaster J 4, Villarroel-Williams N 1, Nurse D 5, MacFarlane A 1 1 University Of Limerick, Ireland; 2 Shannon Family Resource Centre, Ireland; 3 Intercultural and Diversity Education Centre , Ireland; 4 Kansas University Medical Centre, United States; 5 Health Service Executive, Dublin, Ireland

Few documented examples of BACKGROUND Meaningful involvement of different stakeholders in health research partnerships increasingly valued. Experiential wisdom acquired in everyday life as a source of valid knowledge. Participatory research as a means to involve stakeholders in health research decision-making. Few documented examples of HOW to incorporate the knowledge of diverse stakeholders in research co-governance

POLICY DEVELOPERS/IMPLEMENTERS EXPERIENTIAL KNOWLEDGE THE EMH-IC PROJECT Ethnic Minority Health in Ireland – Co-creating knowledge SCHOLARLY DISCIPLINES Medical Sociology Biomedical Statistics Epidemiology Political Sciences Population Health COMMUNITY ORGANISATION Migrants & ethnic minorities Community workers  HEALTH PROVIDERS Administrative & clinical staff at Primary Health Care centres POLICY DEVELOPERS/IMPLEMENTERS Irish Health Service Executive World Health Organisation (Regional Office for Europe)   ACADEMIC KNOWLEDGE EXPERIENTIAL KNOWLEDGE

BEHIND THE CURTAINS OF MEANINGFUL INVOLVEMENT Inter-Stakeholder Steering Group Key role in project governance Bi monthly meetings (3 hours/each)

BEHIND THE CURTAINS OF MEANINGFUL INVOLVEMENT PARTICIPATORY LEANING AND ACTION APPROACH TECHNIQUES Flexible brainstorming, traffic light exercises, card sorting, card ranking, matrices, and web diagrams. MODE OF ENGAGEMENT Deliberation, mutual learning and self-reflexion

BEHIND THE CURTAINS OF MEANINGFUL INVOLVEMENT PARTICIPATORY LEANING AND ACTION APPROACH TECHNIQUES Flexible brainstorming, traffic light exercises, card sorting, card ranking, matrices, and web diagrams. MODE OF ENGAGEMENT Deliberation, mutual learning and self-reflexion 1- Identify pre-conceived assumptions 2- Select study sites 3- Design operational sequence of field-work activities 4- Develop a dissemination strategy

STEP 1 – PROSPECTIVE SITES & AGREED CRITERIA 1. Socioeconomic context 2. Volume of minority ethnicities 3. Diversity of ethnicities 4. Diversity of migrant typologies (e.g. refugees, labour migrants) 5. Willingness of health professionals to take part in the study 6. Number of registered patients 7. Capacity to participate (e.g. availability of staff) 8. Geographical location 9. Health care delivery context 10. Structure of PHC facility

STEP 2. CO-CREATED MATRIX (SITES-CRITERIA) KEY CRITERIA    Prospective study sites (Handout 1)   KEY CRITERIA CANDIDATE SITES CONTEXT DIVERSITY MINORITY ETHNICITIES DIVERSITY MIGRANT TYPOLOGIES WILLINGNESS CAPACITY LOCATION CONVENIENCE SIZE SITE 1 N=9,590 - District in “affluent” category -76% white Irish. Other white (14%) and Asian (4%) above nat. average (9% and 2%) Super diverse population. About 40 nationalities Recent refugees from Syria, political refugees from Chile since the 80s, labour migrants, Irish travellers Local health partners very interested Contacts with existing natural groups Medium SITE 2 N=1,065 - One of the country’s most disadvantaged urban areas. -52% white Irish, 33% other white, 7% Asian (vs 84%, 9%, 2% nat. average) + 100 nationalities Direct provision, Refugees, Economic migrants Director willing (engaged in research). Busy staff. Good computer capacity Close to community partners/ UL Large

WHAT IS SAMPLING IN QUALITATIVE RESEARCH? STEP 3. INFORMATIVE SESSION EMH-IC PROJECT – SG MEETING # 3 WHAT IS SAMPLING IN QUALITATIVE RESEARCH? Rationale and typologies

STEP 4. VISUAL RANKING (TRAFFIC LIGHT EXERCISE)    INDIVIDUAL WORK 30’ THINK AND RATE – ONE COLOUR PER SITE (ONLY 3 GREEN) IS THIS A SUITABLE SITE FOR EMHIC? YES NO WOULD AGREE PROSPECTIVE SITES RATINGS SITE 1 SITE 2 SITE 3 SIRE 4 SITE 5 SITE 6 SITE 7

STEP 4. VISUAL RANKING (TRAFFIC LIGHT EXERCISE)    GROUP WORK 60’ SHARE RATES DELIBERATE JOINTLY BUILD ON EACH OTHERS’ INSIGHTS ONE BY ONE JUSTIFY RATIONALE PROSPECTIVE SITES RATINGS SITE 1 SITE 2 SITE 3 SIRE 4 SITE 5 SITE 6 SITE 7 Any one wants to change rating?

STEP 3. TRAFFIC LIGHT EXERCISE STEP 4. VISUAL RANKING (TRAFFIC LIGHT EXERCISE) Chart 1

STEP 4. VISUAL RANKING (TRAFFIC LIGHT EXERCISE) Chart 2 MODIFIED VIEWS

DISCUSSION & CONCLUSION The use of PLA techniques fostered a fertile communication exchange that yielded broader and deeper understandings. This process of co-learning and joint reflection generated new forms of hybrid knowledge that leveraged joint decision-making. This allowed stakeholders to participate meaningfully by contributing to key decisions in the project governance. Unveiling how participatory tools are employed is key to documenting progress towards meaningful stakeholder involvement

THANKS!