Participation and knowledge transfer
There is a pressing need for all research on the population health, but especially for that on policies to address health inequalities and their social determinants, to incorporate the views, perspectives and priorities of the main stakeholders, that is, social groups affected by inequality and their representatives in civil society.
On the other hand, there is a gap to fill between knowledge generation and its effective transfer and use for policy decisions to be implemented, as well as a need to proceed from raising awareness to fostering change.
Community and civil society participation, a costly but worthwhile process
In regards to knowledge transfer, we also conducted an applied ethnography (detailed case study) within the largest state-backed health equity project of its kind focused on segregated Roma communities called Healthy Communities (2). To move from theory to practice, we also drew lessons from different degrees of community partnership present in the project, including the participation of Caritas Barcelona in the SOPHIE consortium and in housing research studies. We prepared a report on the experiences derived from the involvement of different stakeholders in the research process (3).
In the scoping review, we found that CBPR has been used minimally by researchers for research on migrants and ethnic minorities in Europe and that outside Europe its expected causal roles are being operationalised by researchers in a rather unsystematic manner. Based on overlapping researcher impressions, however, several causal mechanisms can be postulated through which particular CBPR features, e.g. sensitive pre-assessment of cultural and social norms, seem to facilitate the involvement of communities in research on migrant and ethnic minority health (1).
The results of a case study of Healthy Communities showed that the community participation concept was not translated into the organisational level as intended within the expert discourses. Despite this conceptual weakness, the project appeared to be successful in fostering intended changes in the target population's health-related circumstances, thanks precisely to its participative features (see 'In focus') (2). Participatory data collection methods gather important perspectives that enrich the evaluation of the impact of social policies. Several barriers can be found in the recruitment of vulnerable groups affected by the policy, from time constraints to negativism, mistrust or overburden, but their experiences have made the effort worthwhile. Frontline professionals working with them may be a complementary source of information and can help to reach them (3).
Involvement in partnered research of social organisations like Caritas requires a mutual understanding and constant dialogue with academic groups, and a balance between research needs (its priority mission of social care) and the avoidance of false expectations among participating users. Nevertheless, the voice of these organisations is highly valued by society and can maximise the impact of research (2) (see 'In focus').
Mediating health for segregated Roma in Slovakia: An ethnographic case study (2).
Health-mediation programs represent pivotal state-backed health-equity policies addressing the needs of segregated Roma communities in Central and Eastern Europe. The Slovak Healthy Communities (HC) program -which has been operational for over 10 years mostly employing segregated Roma and is now serving around 200 communities nationwide under the direct supervision of the Ministry of Health- is among the most advanced of these initiatives.
In our applied ethnographic study of the HC program we relied on analyses of documentation, long-term participant observations, and semi-structured interviewing across all organisational levels of the program. We found the program to be rather out-dated and conceptually flat: while it set out to emphasise the targeted population's health-related behaviour and responsibility and to intervene, this was to be done through edification and temporary assistance with healthcare access. Nevertheless, thanks to an implicit standard of pragmatic flexibility and personal commitment to empathy, the actual fieldwork exhibited unprecedented positive impacts. Many field coordinators were also encouraged and capable of negotiating improvements in local basic infrastructure and effectively increased local bridging social capital. Moreover, with their stories of personal success congruent with local cultural standards and immediate capacities, many field assistants seemed to inspire other community members as particularly realistic and appealing role models.
Partnered research on housing and health.
Partnership of Caritas Barcelona led to the design of a study of users in vulnerable housing situations. The baseline survey was featured in a Caritas report. The reputation of Caritas was key to bringing the study to the front page of most local newspapers (5).
Similarly, the report with results of the online survey of participants in the Mortgage Affected Platform was launched on the eve of the admission to the regional parliament of a citizens' petition on housing policies. The following day, the Platform handed the report to all parties in the parliament and secured their written commitment to the approval calendar.
(1). Belak A. , Bosáková L, Veselska Z, et al. Operationalization of community-based participatory research (CBPR) engaging migrant and ethnic minority communities: A scoping review. Forthcoming.
(2). Belak A. , Madarasova Geckova A, van Dijk JP, et al. Inadvertent empowerment? Qualitative study of 'community participation' implementation within a health-mediation program for segregated Roma communities in Slovakia. Forthcoming.
(3). Bosáková L, ed. Methods of stakeholders' involvement in evaluating the impact of structural policies. SOPHIE, Deliverable D7.1, 2014.
Social media are good channels for broadening the reach of politically relevant research
From the video to politics
SOPHIE 'Urban renewal and health' video presented at the European Public Health Conference plenary.
The participation of affected populations and frontline professionals adds value to policy evaluations and research.
Face-to-face contact, respect and gaining trust are key for the effective involvement of stakeholders in research and in the use of findings.
Researchers should make efforts to actively disseminate their work and knowledge on social and political determinants of health and also contribute to the funding of agencies through emerging social channels. Research institutions should back these efforts.
Research on Participation and knowledge transfer was part of Work Package 7 (Cross-cutting approaches for fostering change: participation, knowledge transfer, agenda setting), which has been led by Andrea Madarasová Gecková and Lucia Bosáková, PJ Śafárik University - CoHeReNT in Košice, Slovakia.
The Centre for Research on Inner City Health was also involved.