the ophelia (optimise health literacy and access) process · lessios, & yeh, 2013). for...

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The European Health Psychologist

Roma populations in theCentral and EasternEurope live shorter livesand face greater burdenof disease than theirnon-Roma neighbours(Cook, Wayne, Valentine,Lessios, & Yeh, 2013). Forsegregated Roma co-mmunities, where thehealth outcomes are ty-

pically the worst, the core intermediate deter-minants behind the disparity are well docu-mented and known: radically poorer materialcircumstances, riskier health-related behavioursand greater health-care access barriers(European Union, 2014).

Several programs have been introduced tosupport Roma to live healthier lives but thesehave not generated many substantive impro-vements. Despite these findings, Roma healthremains a European priority and there is strongpolicy promoting the need for innovativeprograms that generate improved outcomeswhile preserving Roma autonomy and culturaldiversity (Koller, 2010).

In this setting, health literacy is a highlyrelevant construct. According to a recent WHOHealth Literacy Toolkit from the South East AsiaRegional Office (Dodson, Good, & Osborne, 2015),health literacy is the personal characteristics andsocial resources needed by individuals andcommunities to access, under-stand, appraiseand use information and services to makedecisions about health. Health literacy includesthe capacity to communicate, assert and enact

these decisions. The construct of health literacyis therefore of great importance when workingwith disadvantaged and marginalised groups whomay have a range of educational, cultural andstructural barriers that limit their access to andunderstanding of health info-rmation and healthservices.

This paper seeks to explore the potential of anewly developed, grounded and participatoryapproach to development of health-literacy andhealth-care access interventions for equity – theOphelia (OPtimising HEalth LIteracy and Access)process (Batterham et al., 2014). The metho-dology involves undertaking a needs assessmentof the target population using intensivequalitative and quantitative methods, developingvignettes of key sub-groups within the popu-lation based on their health literacy profile ofstrengths and weaknesses, and then engagingwith frontline practitioners and community me-mbers in developing realistic solutions(Batterham et al., 2014). We will first reviewOphelia’s core components and then discuss whywe believe this kind of approach might advancethe current practice of interventions to promotehealth and access to timely healthcare withinmarginalized Roma.

The Health Literacy Questionnaire(HLQ) as a measure of health literacyneeds

The HLQ was developed in partnership withpatients, practitioners and managers in Australiaand comprises nine separate dimensions that

The Ophelia (OPtimise HEalth LIteracyand Access) ProcessUsing health literacy alongside grounded and participatory approachesto develop interventions in partnership with marginalised populations

original article

the Ophelia processKolarcik et al.

Peter KolarcikP.J. Safarik University &

Olomouc University Society

and Health Institute, Palacky

University Olomouc

Andrej BelakP.J. Safarik University

Richard H.OsborneDeakin University


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provide comprehensive information on healthliteracy abilities, strengths and needs, as well asindicators of the experiences an individual mayhave when attempting to engage withpractitioners or a health service (Osborne,Batterham, Elsworth, Hawkins, & Buchbinder,2013). To assist users, practitioners andpolicymakers to understand the health literacydimensions, the constructs were organised intoclear high and low descriptors (Table 1). The HLQhas been translated and culturally adapted tomany languages and is being used in over 30countries.

The HLQ provides a fine-grained profile of theindependent health literacy needs of individualsand their communities and therefore provides aframework for health workers to take action tobuild upon strengths and to introduce ways to

improve weaknesses or assist people tocompensate for weaknesses.

It is not always clear whose health literacymight be the most important (see Figure 1).When considering health literacy from anindividual through to a whole-of-communityperspective, integrated interventions that includethe way individuals act, learn and behave withintheir family, with healthcare providers, andwithin their wider community can be considered.The intervention might include one-on-onecoaching about risk factors, medical terminologyor healthy food options, through to community-wide decision making.

The term ‘interactive health literacy’ proposedby Nutbeam (1998) includes literacy, but alsosocial and other communication skills whichenable a person to actively participate in everyday


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activities, to extract information and derivemeaning from different forms of communication,and to apply new information to changingcircumstances. The HLQ covers these skills andinteractions very well (Osborne et al., 2013), butthe emphasis in practice, however, needs to alsoinclude community-level empowerment. Inmarginalised communities, social cognitive

processes need to be considered and this is akinto Nutbeam’s asset-based model of healthliteracy (Nutbeam, 2008). The challenge now ishow to build assets and empowerment at theindividual, family and community level inpartnership with marginalised communities suchthat substantive benefits are experienced by allmembers of the community in an equitable



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manner.

The use of locally-derived vignettes- finding hearts and wisdom ofthose targeted

In Ophelia, the health needs assessmentdoesn’t finish with aggregate HLQ numbers.Among its premises belongs the understandingthat in many communities, self-determinationdown to the level of individuals (such as itstrongly is the case among the segregated Roma)is paramount. Therefore, participatoryapproaches, which actively and overtly seek localwisdom, are often more effective – importedone-size-fits-all interventions may not matchthe distributions of local settings and priorities(Minkler & Wallerstein, 2011). While proceduresfor participatory community development havebeen in place for many years, e.g. the Asset-based community development(http://www.abcdinstitute.org/), the Opheliaprocess proposes a novel strategy for bringing thevoice of all stakeholders to the table.

While the nine HLQ domains provide detailedprofile of health literacy distribution and identifygroups and subgroups with low, average or highhealth literacy, the application of a multivariate

technique (cluster analysis) to HLQ data makesthe data much more powerful. Cluster analysisgroups together individuals with similar scoresacross each of the individual HLQ scales. Fromthe HLQ scales, demographic and clinical datawhere available, as well as from qualitativeinterviews to obtain data on context and a senseof the daily challenges of individuals within thecluster subgroups, vignettes (i.e., scenarios orshort stories) are developed. Such vignettes,which represent the range of individuals across acommunity, are profoundly engaging forstakeholders as they bring the HLQ data to life,enabling vivid visualisation of a range ofcommunity members (empirically selected), thatbecome the focus in co-production workshops. Inthe Ophelia process about 5 to 7 vignettes aredeveloped covering individuals with low, mixedand high health literacy scale score profiles (SeeFigure 2 for an example of a vignette).Community stakeholders are asked to respond tothree questions:

(1) Do you recognise the individual in the story assomeone living in your community?

(2) How can we work with this person so they havethe best chance of getting and maintaining goodhealth?

(3) If we have a large number of people like this inour community, how can we organise the community

Figure 1. Levels of health literacy that are worth considering when seeking to improve health and equity outcomes incommunities



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to ensure they have the best chance of getting andmaintaining good health?

While the questions are slightly reframed forprofessionals, the same vignettes and same richdiscussion unfolds. A full range of ideas forimprovement, redesign, or novel interventionsare volunteered from stakeholders and these areorganised into level of the system targeted forimprovement (individual, family, community,practitioner, organisation or inter-agency). Theideas are then prioritised by local stakeholdersfor action and referenced against the publishedliterature.

The marginalized Roma, health-mediation and Ophelia’s promises

As indicated above, marginalized Roma mightrepresent an ideal place to implement a widerange of published, well-tested public healthinterventions, each aspiring to be evidence-based, practical and scalable. It is critical torecognise that segregated communities haveprofound challenge, and compared to their non-Roma counterparts have: worst health; materiallymost deprived; worst socioeconomic position; inmany respects quite heterogeneous both acrossand within communities. Plus, as it has been welldocumented for Roma and analogous groupsacross the continent (Stewart, 2013), the observed‘multi-dimensional social exclusion’ is alsosupported also by a consistent practice of self-exclusion based on a counter-culturesunderstanding particular aspects of non-Roma

Figure 2. Vignette representing a health literacy profiles derived from the nine dimensions of the Health LiteracyQuestionnaire (HLQ). Overall, this person doesn't really understand what to do, but would trust the doctor



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ways as socially and morally inappropriate (seealso Table 2).

While this combination of challenges maysound intractable, over the last decade, inisolation from both government agencies andscientific communities, a new trend has emergedin the region, initiated by small local NGOs,which appears unprecedentedly promising –health-mediation for marginalized Romacommunities (Open Society Institute, 2011; WorldHealth Organization, 2013). Despite many voids

at the formal level, at least some of the programsappear to be very successful in their actualpractice: apart from significantly decreasinghealthcare access barriers, they also seemcapable of dramatically increasing particularcommunities’ social capital and improve theirinfrastructure directly significant for health(Dodson et al., 2015).

Ophelia appears capable of passing the“marginalized Roma acceptability test” becauseaspects that are working well in the health-



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mediation programs are based andoperationalized in a very similar way to Ophelia:they focus on broadly defined health-literacyelements including structural aspects such ashealthcare access; participatory approach tohealth-needs assessment; and participatoryapproach to development of solutions throughnetworking with other local stake-holders. Infact, the resonance between the emergent grass-roots processes of the health-mediator programand the formalised Ophelia process is so striking,the health-mediator leadership in Slovakia –since last year including the Slovakian Ministry ofHealth - have approached our team to apply HLQas a key element of the evaluation to formallyassess the impacts of health-mediatorintervention.

Going forward: Health literacydevelopment and equity.

The use of local HLQ data (or other relevanthealth literacy data) that captures the voice of thetarget populations and feeds into real-worldvignettes, uses co-production and local prioritysetting, not only assists with ensuringintervention are fit-for-purpose, but alsoincreases trust and commitment by stakeholdersto implement them. The Ophelia process is apromising mechanism to enable systems-levelimprovements. The evaluation of many currentOphelia projects will help this novel approachmature and hopefully generate wide rangingbenefits across marginalised and otherpopulation groups experiencing healthinequalities.

Acknowledgements

The authors wish to thank Roy Batterham and

Alison Beauchamp for the numerouscontributions to structural and practical aspectsof the Ophelia model and for developing thevignette.

References

Batterham, R. W., Buchbinder, R., Beauchamp,A., Dodson, S., Elsworth, G. R., & Osborne, R.H. (2014). The OPtimising HEalth LIterAcy(Ophelia) process: Study protocol for usinghealth literacy profiling and communityengagement to create and implement healthreform. BMC Public Health, 14, 694-694.doi:10.1186/1471-2458-14-694

Cook, B., Wayne, G. F., Valentine, A., Lessios, A.,& Yeh, E. (2013). Revisiting the evidence onhealth and health care disparities among theRoma: A systematic review 2003–2012.International Journal of Public Health, 58(6), 885-911. doi:10.1007/s00038-013-0518-6

Dodson, S., Good, S., & Osborne, R. (Eds.). (2015).Health Literacy Toolkit: For Low- and Middle-Income Countries - A series of information sheetsto empower communities and strengthen healthsystems. New Delhi: World HealthOrganization, Regional Office for South-EastAsia.

European Union. (2014). Roma Health Report.Health status of the Roma population. Datacollection in the Member States of the EuropeanUnion. Brussels: European Union.doi:10.2772/3140

Koller, T. (Ed.). (2010). Poverty and social exclusionin the WHO European Region: Health systemsrespond. Copenhagen: WHO Regional Office forEurope.

Minkler, M., & Wallerstein, N. (2011). Community-based participatory research for health: Fromprocess to outcomes. San Francisco, CA: JohnWiley & Sons.

Nutbeam, D. (1998). Health promotion glossary.Health Promotion International, 13(4), 349-364.



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doi:10.1093/heapro/13.4.349Nutbeam, D. (2008). The evolving concept of

health literacy. Social Science & Medicine, 67(12),2072-2078.doi:10.1016/j.socscimed.2008.09.050

Open Society Institute. (2011). Roma HealthMediators: Successes and Challenges. New York:Open Society Foundations.

Osborne, R. H., Batterham, R. W., Elsworth, G. R.,Hawkins, M., & Buchbinder, R. (2013). Thegrounded psychometric development andinitial validation of the Health LiteracyQuestionnaire (HLQ). BMC Public Health, 13(1),1-17. doi:10.1186/1471-2458-13-658

Stewart, M. (2013). Roma and Gypsy "Ethnicity"as a subject of anthropological inquiry. AnnualReview of Anthropology, 42, 415-432.doi:10.1146/annurev-anthro-092010-153348

World Health Organization. (2013). Roma healthmediation in Romania. Copenhagen: WorldHealth Organization Europe.


Peter KolarcikDepartment of Health Psychology,

Faculty of Medicine, P.J. Safarik

University, Košice, Slovakia &

Olomouc University Society and

Health Institute, Palacky

University Olomouc, Olomouc,

Czech Republic

[email protected]

Andrej BelakDepartment of Health Psychology,

Faculty of Medicine, P.J. Safarik

University, Košice, Slovakia

[email protected]

Richard H. OsbornePublic Health Innovation,

Population Health Strategic

Research Centre, School of Health

and Social Development, Deakin

University, Geelong, Australia

[email protected]

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