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Acting together -WHO National Health Literacy Demonstration Projects (NHLDPs) address health literacy needs in the European Region

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  • Centre Hospitalier Max Querrien Paimpol France

Abstract and Figures

The burden of noncommunicable diseases (NCDs) is increasing worldwide with the European Region of no exception. This poses economic and social challenges, which contribute to persisting health inequities. Sustainable Development Goal (SDG) target 3.4 specifically focuses on reducing premature mortality from NCDs by a third through prevention and treatment, and promoting mental health and well-being. The promising role of health literacy is increasingly recognized in relation to the prevention and treatment of NCDs throughout the life course. In support of this, WHO has initiated National Health Literacy Demonstration Projects (NHLDPs) in the European Region to generate evidence and accelerate NCD intervention development. The current European NHLDPs use the OPtimising HEalth LIteracy and Access (Ophelia) approach. This manuscript presents the methods, aims, status and preliminary outcomes of the seven flagship European NHLDPs, which cover a broad scope of settings (such as schools, hospitals and communities), health conditions (such as cardiovascular disease, renal failure and chronic obstructive pulmonary disease) and life stages. While the long-term impact of these NHLDPs on the NCD curve is too early to predict, the processes of engagement and action in each of the projects are promising.
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REPORT



Mark Matthijs Bakker1*, Polina Putrik 1*, Anna Aaby2, Xavier Debussche3, Janis Morrissey4, Christine Råheim Borge5, Dulce
Nascimento do Ó6, Peter Kolarčik7, Roy Batterham8, Richard H. Osborne8, Helle Terkildsen Maindal2
*contributed equally
1Rheumatology division, Internal Medicine, Maastricht Universi ty Medical Centre and Care and Public Health Research Institute, Maastricht, the Netherlands
2Department of Public Health, Aarhus University, Aarhus, Denmark
3Centre of Clini cal and Epidemiological Investigations, French Nation al Institute of Health and Medical Re search, Univ ersity Hospital Felix Guy on, La Réunion , France
4Irish Heart Foundation, Dublin, Ireland
5Lovisenberg Diaconal Hospital, Oslo, Norway
6Portuguese Diabetes Association, Lisbon, Portugal
7Depar tment of Health Psychology, P.J. Šafárik Universit y, Košice, Slovak ia
8Centre of Glob al Health and Eq uity, Swinburne Uni versity of Technology, Melbourne, Australia
Corresponding author: Mark Matthijs Bakker (email: mark.bakker@mumc.nl)
ABSTRACT
The burden of noncommunicable diseases (NCDs) is increasing worldwide
with the European Region of no exception. This poses economic and social
challenges, which contribute to persisting health inequities. Sustainable
Development Goal (SDG) target 3.4 specically focuses on reducing
premature mortality from NCDs by athird through prevention and treatment,
and promoting mental health and well-being. The promising role of health
literacy is increasingly recognized in relation to the prevention and treatment
of NCDs throughout the life course. In support of this, WHO has initiated
National Health Literacy Demonstration Projects (NHLDPs) in the European
Region to generate evidence and accelerate NCD intervention development.
The cur rent Europea n NHLDPs use th e OPtimisin g HEalth LIte racy and Acc ess
(Ophelia) approach. This manuscript presents the methods, aims, status and
preliminary outcomes of the seven agship European NHLDPs, which cover
a broad scope of settings (such as schools, hospitals and communities),
health conditions (such as cardiovascular disease, renal failure and chronic
obstructive pulmonary disease) and life stages. While the long-term impact
of these NHLDPs on the NCD curve is too early to predict, the processes of
engagement and action in each of the projects are promising.
Keywords: NONCOMMUNICABLE DISEASES, HEALTH LITER ACY, OPTIMISING HEALTH LITERACY AND ACCESS (OPHELIA),
INTERVENTION RESEARCH, CO-DESIGN
INTRODUCTION
e burden of noncommunicable diseases (NCDs) is increasing
worldwide due to population growth, ageing, and lifestyle-related
factors, and the European Region is no exception (1). NCDs
are the leading cause of death around the world, contributing
to73.4% of total deaths in 2017 (2).NCDs aect individuals and
their families throughout the life course and impede both social
and economic growth (3, 4). e burden of NCDs hits hardest on
socially or economically disadvantaged people and contributes
to persisting health inequities (5, 6). One of the Sustainable
Development Goal targets (SDG target 3.4) is focused on reducing
premature mortality from NCDs by one third through prevention
and treatment, and promoting mental health and well-being (7).
At the 9th Global Conference on Health Promotion in
Shanghai in 2016, health literacy was recognized as one of
the key health promotion pillars to achieve the 2030 Agenda
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
for Sustainable Development (8). Multiple denitions of
health literacy have been proposed over the last decade.
A particularly comprehensive denition – acknowledging
both individual and organizational health literacy – was put
forward by the International Union for Health Promotion and
Education. “Health literacy is the combination of personal
competencies and situational resources needed for people to
access, understand, appraise and use information and services
to make decisions about health. It includes the capacity to
communicate, assert and act upon these decisions. Health
literacy responsiveness describes the way in which services,
organizations and systems make health information and
resources available and accessible to people according to health
literacy strengths and limitations” (9).
Rapid advances in health technologies and treatment options
inevitably result in the increased complexity of health systems.
is poses a risk for vulnerable people and communities,
with lower health literacy, to be le behind due to reduced
access, knowledge and understanding (9). Vulnerable groups
include people who have limited education, a migration
background, multiple morbidities, or experience loneliness,
among others whose voices are oen le unheard (10). When
interventions fail to address the specic needs of these groups
and communities, average improvements in population health
can conceal widening health inequalities. erefore, we should
always question whether new interventions reach those who
are oen not considered, in order to prevent the unintentional
widening of the health gap.
Innovative approaches – accounting for the variable health
literacy needs of individuals and communities – could
accelerate the development of eective interventions and
improve the reach and impact of interventions currently in
place. As health literacy is associated with health outcomes
through d ierent pathways (11), mult ilevel solutions of adiverse
nature are required. By genuinely and eectively involving all
stakeholders, including vulnerable groups, interventions are
likely to be more appropriate for awider number of people and
thus support WHO’s mission to leave no one behind (12).
In their mission to reduce the impact of NCDs, WHO and its
Member States are investing in several initiatives to address
health literacy. One of these is led by the WHO Global
Coordination Mechanism on the Prevention and Control
ofNCDs (GCM/NCD) through its Global Working Group3.3
on health education and health literacy for NCDs (13). e
Working Group developed the innovative concept of WHO
National Health Literacy Demonstration Projects (NHLDPs).
NHLDPs are local case studies that are proof of concept
projects, which measure and improve health literacy in alocal
or regional context, and which have the potential and intention
to be scaled up to improve health literacy at a national
level(14). e rst NHLDP was successfully initiated in Egypt
and they are now being implemented in the European Region
and beyond to generate evidence on how health literacy can
accelerate NCD intervention development, implementation
and scale-up. To date, seven research and implementation
projects in Europe have been designated as WHO NHLDPs.
is paper focuses on the development of these agship
European NHLDPs and has the following objectives:
to describe the methodological approach for health literacy
intervention development used in the NHLDPs;
to describe the aims and status of each of the seven NHLDPs
currently underway, based in Denmark, France (Réunion
Island), Ireland, the Netherlands, Norway, Portugal and
Slovakia, across diverse health settings, in populations with
adiversity of NCDs and at dierent life stages;
to discuss the potential role of WHO NHLDPs to advance
health and equity.
METHODOLOGICAL
APPROACH: THE OPTIMISING
HEALTH LITERACY AND
ACCESS (OPHELIA) PROCESS
All of the current NHLDPs are inspired by the Ophelia process
for intervention development (15, 16). e Ophelia process
involves the collaboration of a wide range of community
members, community leaders and health workers to develop
health literacy interventions that are based on the diverse
health literacy strengths and weaknesses identied within
a community (16). Ophelia projects build on eight core
principles as presented in Table 1 (15).
e Ophelia process includes three phases (Fig. 1), with the
eight principles strongly embedded from the outset in order
to maximize the potential impact on equity and health
outcomes (15). Phase 1 involves a local needs assessment,
using multidimensional tools such as the Health Literacy
Questionnaire (HLQ) (17) or the Information and Support for
Health Actions Questionnaire (ISHA-Q) (18), combined with
local data such as on service engagement or organizational
responsiveness. is i s followed by workshops with stakeholders
including local professionals (hea lth professionals, com munit y
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
workers, managers etc.) and members of the community,
in which so-called vignettes, generated from the locally
collected data, are presented and discussed. e vignettes
capture groupings of strengths and weaknesses across health
literacy domains, as well as demographic background and
lived experience of adiverse range of individuals within the
population, by creating narratives about individuals within
each grouping. e vignettes ensure the data collected come
across as real-life examples of the diversity of individuals
living in the community. Stakeholders reect on the vignettes,
utilizing local wisdom to address the identied challenges,
needs and strengths of arange of community members. Phase
2 entails the co-design of interventions into implementable
packages, in collaboration with local stakeholders, using the
results from Phase 1. Phase 3 then focuses on the testing,
implementation and quality improvement, evaluation and
embedding of selected interventions (15, 16). Amore thorough
description of the dierent phases has been published
elsewhere (15, 16, 19).
WHO NHLDPS
As of today, seven European projects have been designated
as a WHO NHLDP. ey are united under the newly
established WHO European Action Network on Health
Literacy for Prevention and Control of NCDs, launched in
January 2019 (20). is Action Network seeks to generate
FIG. 1. THE THREE PHASES OF THE OPHELIA PROCESS
Source: amended from Beauchamp et al., 2017 (15 )
PHASE 1
Identifying local strenghts,
needs and issues
PHASE 2
Co-design of interventions
PHASE 3
Implementation, evaluation
and ongoing improvement
Local data about health, health
behaviour, service engagement,
organisational responsiveness, and
health literacy are systematically
collected (or extracted from existing
data sources).
These data are analysed and
presented to stakeholders for
discussion and interpretation.
Effective local practices and
innovative intervention ideas are
then identified.
Local stakeholders make decisions
about local priorities for action.
Interventions with potential to
respond to local health literacy
challenges, or to improve
information and service access
and availability, are designed and
implementation is planned.
Health literacy interventions are
applied within quality improvement
cycles: organisations develop
and implement trials, and
actively evaluate and improve the
effectiveness, local uptake and
sustainability of the interventions.
TABLE 1. OPHELIA (OPTIMISING HEALTH LITERACY
AND ACCESS) CORE PRINCIPLES
1.  Outcomes
focused
Improved health and reduced health inequities
2.  Equity driven All activities at all stages prioritise
disadvantaged groups and those experiencing
inequity in access and outcome
3.  Co-design
approach
In all activities at all stages, relevant
stakeholders engage collaboratively to design
solutions
4.  Needs-
diagnostic
approach
Participatory assessment of local needs using
local data
5.  Driven by local
wisdom
Intervention development and implementation
is grounded in local experience and expertise
6.  Sustainable Optimal health literacy practice becomes
normal practice and policy
7. Responsiveness Recognise that health literacy needs and
appropriate responses vary across individuals,
contexts, countries, cultures and time
8.  Systematically
applied
A multilevel approach in which resources,
interventions, research and policy are
organised to optimise health literacy
Source: reproduced from Beauchamp et al., 2017 (15)
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aEuropean community of practice and build up evidence on
the on the NHLDP approach's impact on tackling the burden
of NCDs. e seven initial projects are diverse in nature,
dealing with a broad range of health settings, in populations
with diverse health conditions and at dierent life stages
(Table 2). ese projects explore the utility of the Ophelia
process in generating better care, more sustainable health-care
services, better health and equity for people with NCDs. e
network also enables teams to exchange experiences and build
expertise and capacity within the European Region. We briey
introduce the seven projects below.
NHLDP DENMARK
e Heart Skills Project in Denmark aims to develop specic
health literacy interventions targeting participation and
health outcomes in people referred to acardiac rehabilitation
unit in a Danish municipality. e strong positive impact of
cardiac rehabilitation on health outcomes, including quality of
life following cardiac disease onset, is well documented (21).
Understanding the condition, self-management and the ability
to navigate the health system by patients all play a central
role in recovery and prevention of complications. ese
competences are dimensions of health literacy and low health
literacy is strongly associated with the prevalence of cardiac
conditions and with cardiac risk behaviour (22).
e needs assessment of the Heart Skills Project focused
on both the health literacy of individuals and on the health
literacy responsiveness of the unit. HLQ proles of 161 people
referred to a cardiac rehabilitation unit were generated,
along with an organizational self-assessment based on the
Organisational Health Literacy Responsiveness (Org-HLR)
framework (23). e latter provided an overview of the
capacity for health literacy responsiveness of the unit and
initiated a transformation: to use health literacy to guide
future approaches in identifying and managing vulnerable
patients. Patients, sta and managers participated in co-
design workshops, generating many improvement ideas.
ese ideas were incorporated into programme theory, which
included several new initiatives for improving attendance and
participation. Based on thes e proc esses, the Heart Sk ills Project
is currently testing two interventions in the rehabilitation unit
focusing on patients’ social support and support by health-
care providers.
NHLDP FRANCE
e French project aims to design interventions to improve
digital health literacy and health equity on Réunion Island,
where the Indian Ocean health innovation digital platform is
currently being developed to address the burden of the most
prevalent chronic diseases in the region. Digital health literacy
is an individual’s ability to successfully search for, access,
understand and evaluate desired health information and
services from electronic sources, and then use this information
to manage ahealth problem (24).
e needs assessment (using the HLQ, eHLQ and qualitative
interviews) includes people with chronic diseases such as
diabetes, cardiovascular disease and kidney disease in outpatient
hospital settings, health-care management networks, dialysis
centres, and pharmacies (n=600). Early results from the
assessment of health literacy needs and strengths of people living
with long-standing diabetes on Réunion Island show diculties
in getting and appraising health information. It also revealed
great diversity in people’s ability to navigate health services
depending on location (for example, limited access to specialists
in remotes areas) and the presence of aprimarily functional (or
one-way) relationship to treatment and disease follow-up, where
patients leave it up to health professionals to provide directions
and initiatives. In contrast, respondents actively engaged in
exercise and healthy food practices. e study also demonstrated
that social support for health as well as relationships with
professionals and hea lth-care serv ices are import ant determina nts
for successfully managing health (25). In Phase 2, these data will
be used to provide the essential elements for co-design, engaging
all professional, institutional and consumer stakeholders in
generating interventions to improve access and equity in health
for people with chronic diseases.
NHLDP IRELAND
e project in Ireland addresses cardiovascular disease and
obesity in children and adolescents. Childhood obesity has been
acknowledged as one of the most s erious public health chal lenges
of the 21st century due to its increasing prevalence and
associated health consequences (26). Obesity can aect achild’s
immediate health, educational attainment and quality of life
(27) as well as tracking into adulthood, bringing the negative
consequences of NCDs (28). Despite health literacy being
identied as acritical factor in preventing NCDs and addressing
heath inequalities, there is little research exploring the
eectiveness of health literacy interventions, especially among
adolescents. e Irish Hea rt Foundation Schools Health Literacy
Project aims to conduct research on adolescent health literacy
levels and develop a school-based intervention addressing
health literacy in disadvantaged communities. e project will
use the Ophelia process to develop ahealth literacy intervention
for students aged 12–16 years in DEIS (delivering equality of
opportunity in schools) schools. Data on the health literacy
needs of the students, parents and teachers will be gathered,
followed by co-design workshops with relevant stakeholders. It


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is envisaged that the intervention will encompass a whole-
school approach using cutting-edge technology, embedded
within the Wellbeing curriculum. Scalability and transferability
are being factored in from the outset.
NHLDP THE NETHERLANDS
e project in the Netherlands is focused on addressing the
needs of patients with the three most common rheumatic
conditions (rheumatoid arthritis (RA), spondyloarthritis
(SpA) and gout) in specialized outpatient rheumatology care
in ahospital setting. Rheumatic and musculoskeletal diseases
are highly prevalent and their impact on the global burden
of disease has increased by 65.9% between 1990 and 2017
due to population growth, population ageing and improved
diagnostics (1). Considering that one in every three people in
the Netherlands has limited health literacy (29), and that there
is a large equity gap in the prescription of costly rheumatic
medication (30), there is potential to reduce the burden of
rheumatic conditions by addressing health literacy needs.
e HLQ-based needs assessment involved aclinically diverse
sample of nearly 900 patients from three geographically and
socio-demographically diverse regions. Additionally, this
project measured health professionals' perceptions of their
patients' health literacy in order to explore patterns in eventual
under- or overestimation. During the needs assessment phase,
the study team observed aremarkable increase in the clinical
sta’s awareness of health literacy and their engagement in the
project. Collaboration with primary care and public health
professionals will be sought to achieve maximum impact
during Phase 2 and 3 of the project.
NHLDP NORWAY
e Norwegian project targets people with chronic obstructive
pulmonary disease (COPD), adisease with serious symptoms
such as breathlessness, fatigue, depression, anxiety and
pain, as well as physical impairment and low quality of life.
Exacerbations and repeated readmission to hospitals are
common (31). Accessing, utilizing and following-up on
treatment is complex for these patients. us, people with
COPD may have many health literacy challenges, but health
literacy has been little investigated in this population.
NHLDP Norway is the only European NHLDP in Phase 3 as
of June 2019. It followed the Ophelia phases with the following
activities. First, a cross-sectional needs assessment study was
performed among 158 patients, using the HLQ and focus
group interviews of patients with COPD and health-care
professionals. Focus group interviews identied four main
focal areas of health literacy to be addressed: 1) to increase
security to feel less anxious; 2) to increase knowledge of
patients and professionals, improve follow-up and maintain
information ow between patients and professionals, as well
as between specialist health-care services and community
health-care services; 3) to increase motivation for endurance
and self-management; and 4) to increase dignity. Further
analysis from the cross-sectional study showed that low health
literacy was associated with higher readmission rates, more
disease-related problems, low well-being, low self-ecacy,
living alone, smoking habits and poor handling of medication.
In Phase 2, these factors were discussed in workshops with
health professionals from the community and specialist
services, patients with COPD and researchers. is led to the
development of ahealth literacy intervention that is currently
being tested in comparison to the standard care in Phase 3.
Aer hospital ization, the intervention group receives follow-up
by specialized COPD nurses who are trained in motivational
interviewing. Follow-up includes weekly home visits for eight
weeks and monthly telephone calls for an additional four
months. Additionally, medical specialists and community
health-care services collaborate to provide patients with
a supporting intervention, tailored to the individual. is
may include tools to improve knowledge of COPD, use of
medication and tech nical equipment (such as oxygen therapy or
respiratory support), aid to quit smoking, nutritional support,
psychosocial support or assistance in nding and participating
in health-care-related activities in the community. Eects on
hospital readmission, healt h literacy, self-management, quality
of life and health expenditure are currently being investigated
in arandomized controlled trial.
NHLDP PORTUGAL
e main objective of the NHLDP in Portugal is to develop
innovative, responsive approaches to promote health literacy,
focused on the prevention of Diabetes Mellitus Type 2 (T2DM)
and its complications, as well as the promotion of well-being
in the general population. T2DM represents a serious public
health problem with increasing worldwide incidence and
prevalence (32). T2DM is considered ahealth priority because
of its human, social and economic burden, its chronicity
and its association with serious complications (33, 34). Both
prevention and treatment of T2DM can be a daunting task,
requiring people to have substantial health literacy to manage
adequate self-care and be motivated and able to ma ke informed
decisions regarding their health.
e initial needs assessment using the HLQ involved 453
patients from the Portuguese Diabetes Association (APDP
Diabetes Portugal). e health literacy proles resulting from
these data will be used in co-design workshops with patients


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and professionals to identify the priorities, strategies and
activities APDP should focus on. Simultaneously, stakeholder
working groups (with sta and people with T2DM) guided
by the Org-HLR framework (23) will determine priorities for
organizational improvement. Phase 2 will be community-
based, involving the Lisbon and Oeiras municipalities and
their health centres. erefore, the Phase1 needs assessment
will be replicated in these settings with local participants
with diabetes or pre-diabetes, community stakeholders and
health-care professionals. Besides health literacy, the project
will also assess diabetes empowerment and self-care activities
through questionnaires. Overall, these partnerships will allow
athorough diagnosis of needs, identication of priorities, and
co-design of innovative solutions with scaling-up potential.
NHLDP SLOVAKIA
e Slovakia n project targets people wit h various chronic hea lth
conditions. While people with chronic renal failure receiving
dialysis are the primary focus, people with cervical dystonia,
periodontitis, precancerous conditions or endometrial cancer,
and endometriosis are also included.
e number of people requiring dialysis treatment is
continuously increasing because of an increasing prevalence of
chronic kidney disease, although recently growth has slowed
(35). Dialysis patients require complicated therapeutic care and
adherence to treatment protocols is crucial for their successful
management (36, 37). Health literacy is known to be associated
with treatment adherence (38). In this project, health literacy
proles will be used to guide the process to improve health-
care eciency and increase the responsiveness of the Slovak ian
health-care system.
Needs assessment involved 565 patients from 20 dialysis
clinics across Slovakia. Self-reported data were collected
on health literacy, using the HLQ, and quality of life and
adherence through additional questionnaires. Diverse clinical
data (for example, uid overload, phosphoremia, kalaemia,
blood pressure, haemodynamic status) were obtained from
medical records. Data are currently being analysed to generate
vignettes to facilitate Phase 2, which will be in collaboration
with patients and health-care providers from dialysis centres.
Stakeholders will be invited to participate in several workshops
to co-design interventions based on real-life data.
DISCUSSION
e global burden of NCDs is increasing; it poses economic
and social challenges through ever-increasing health system
expenditure and persisting health inequities (1, 46). Health
literacy is increasingly recognized as a means of addressing
inequity– especially in relation to the prevention of NCDs in
all phases of the life course and in population groups that have
been insuciently engaged with in the past (39). e problem
is apparent; now is the time to act.
In this report, we have outlined the basis of the emerging
NHLDP Action Network, initiated under the auspices of
WHO. rough the eight guiding principles embedded in
the Ophelia approach (Table 1), NHLDPs work to improve
health outcomes and equity (15). While each of the NHLDPs
is at adierent stage, they each highlight specic principles
in achieving this goal. e Norwegian project, for example,
currently best showcases the focus on outcomes (Principle 1),
with an ongoing randomized controlled trial measuring the
eects on hospita l readmission, qualit y of life, self-management
and health expenditure. e French project, on the other hand,
best emphasizes the equity-driven approach (Principle 2), as
data are collected in a disadvantaged population of Réunion
Island (40). NHLDP Slovakia notably focuses on involving
stakeholders from multiple levels (for example, consumers,
clinicia ns and managers) (Principle 3) to address low treatment
adherence. e NHLDPs of Portugal and the Netherlands are
making particular eorts to undertake needs assessments in
multiple settings to get data specic to local needs (Principles
4 and 5) while aiming to inform policy and practice for wider
populations. Meanwhile, NHLDP Ireland demonstrates
responsiveness (Principle 7) well by adapting the methodology
to measure health literacy needs of a younger generation.
Last but not least, systematic project application through
amultilevel approach (Principle 8) is exemplied by NHLDP
Denmark where patient health literacy is addressed alongside
organizational health literacy responsiveness. is opens the
door for interventions and developments at the level of patient-
physician interaction, as well as the organizational and policy-
making level, recognizing the multiple pathways through
which health literacy is associated with health outcomes (11).
As the NHLDPs are all still currently within their project
period, sustainability (Principle 6), where optimal health
literacy practice becomes standard practice and policy, has yet
to be demonstrated. However, the projects in Phase 2 and 3
have shown that al l stakeholders involved take ownership of t he
intervention, which ma kes for awell-integrated comprehensive
strategy and bodes well for their long-term impact, aer the
initial project period comes to aclose.
e NHLDP Network oers a number of opportunities,
by simultaneously implementing the NHLDP projects in
multiple settings and contexts, and showing potential for


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TABLE 2. THE SEVEN WHO NHLDPS IN THE EUROPEAN REGION (AS OF APRIL 2019)
Country
and current
Ophelia
phase
Focus
disease(s)
and target
population
Setting Lead and
partner
organizations
Reason for
project
Aims Progress to
date
Funding
Denmark-
Phase 2
Cardiac
conditions
Targets patients
undergoing
cardiac
rehabilitation
A municipal
rehabilitation unit
Lead: Department
of Public Health,
Aarhus University
Partners: Randers
Municipality and
their collaborators
Suboptimal
attendance and
adherence to
arecommended
cardiac
rehabilitation
programme
To develop aspecic
health literacy
intervention targeting
participation and health
outcomes in people
recovering from cardiac
disease
Performed
organization-
and user-
based health
literacy needs
assessments
Co-designed
interventions
based on
vignettes,
focusing
on social
support and
support from
health-care
professionals
Pilot test of
interventions
based on
PDSA-cycle is
underway
External grants
from the
Danish Heart
Association,
regional
authorities and
aprivate fund
along with an
internal research
grant
France
(Réunion
Island)-
Phase 1
Chronic illness
(kidney failure,
diabetes, CVD)
Targets patients
representing
the general
population of
Réunion
Local pharmacies,
dialysis centres,
primary care
network and
specialized
outpatient
clinics (diabetes,
nephrology,
cardiology)
Lead: CIC-EC 1410
INSERM, CHU
Réunion
Partners: ICARE
unit, University
of Réunion,
OIIS eHealth
platform, health-
care provider
associations,
Regional Health
Agency of
Réunion
Inequality
in access,
accessibility,
and use of
digital health
information and
tools, and the
development
of the OIIS
regional eHealth
platform
To assess health
literacy and digital
health literacy
in chronically
ill populations,
disadvantaged as
aresult of geographical,
social or psychosocial,
economic, educational
or cultural reasons
To assess the potential
contribution of existing
tools, via the OIIS digital
platform
To improve access and
equity in health for the
chronically ill
Performed
health
literacy and
digital health
literacy needs
assessments
French
interregional
fund for health
research
Ireland-
Phase 1
Obesity and CVD
in children and
adolescents
Targets young
people (aged
12–16) and
their families
in schools and
communities
Secondary
schools and
communities in
disadvantaged
areas
The project
will be scalable
nationally and
have international
transferability
Lead: Irish Heart
Foundation
Partners: Dublin
City University;
University College
Dublin
High levels
of childhood
obesity,
affecting
children’s
current health,
and throughout
the life course
To assess adolescent
health literacy levels
To co-design
acurriculum-based
health literacy
intervention,
using cutting-
edge technology
in disadvantaged
secondary schools to
address cardiovascular
health inequalities
Performed
literature review
of adolescent
health literacy
Establishment
of project
working group
Dialogue with
atechnology
partner is
ongoing
Irish Heart
Foundation
funding
Additional
funding being
sought


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TABLE 2. THE SEVEN WHO NHLDPS IN THE EUROPEAN REGION (AS OF APRIL 2019)
Country
and current
Ophelia
phase
Focus
disease(s)
and target
population
Setting Lead and
partner
organizations
Reason for
project
Aims Progress to
date
Funding
The
Netherlands-
Phase 1
Rheumatic
conditions (RA,
SpA, gout)
Targets patients
in three hospital-
based centres,
representative
of the national
diversity in
specialized
rheumatic care
Specialized
outpatient
rheumatology
clinics
Lead: Maastricht
UMC+
Partners: Medisch
Spectrum
Twente Hospital
Enschede,
Maasstad
Hospital
Rotterdam
Increasing
burden of
rheumatic
diseases and
inequity in the
prescription
of costly anti-
rheumatic
drugs
To tailor care to health
literacy needs of
patients, improve equity
in care by co-designing
health literate clinics
To explore health
professionals’
perceptions of patient
health literacy in regular
care
Performed
health
literacy needs
assessment
Observed
increased
awareness of
health literacy
among clinical
staff
Internal research
budgets of the
participating
centres &
Niels Stensen
Fellowship
Additional
funding being
sought
Norway-
Phase 3
COPD
Tar get s
patients after
hospitalization
and subsequent
follow-ups in four
community sites
in the Oslo region
Cooperation
between hospital
and community
care
Lead: Lovisenberg
Diaconal Hospital.
Partners:
University of
Oslo and the
community sites;
Grünerløkka,
Gamle Oslo,
St.Hanshaugen
and Sagene
High
readmission
rates for COPD
patients, as well
as high disease
impact: multiple
symptoms, low
quality of life
and diculties
in coping
To develop and evaluate
ahealth literacy
partnership health
promotion intervention,
in collaboration with
patients, hospitals,
municipalities and the
university
Performed
health
literacy needs
assessment
Co-designed
the intervention,
currently being
evaluated in an
RCT
Norwegian
ExtraFoundation
for Health and
Rehabilitation,
internal
budgets of lead
and partner
organizations
Portugal-
Phase 1
Type 2 Diabetes
Mellitus
Targets patients
in communities
and from
anational patient
organization
Diabetes
outpatient clinic
with
community
involvement
Lead: NOVA
School of Public
Health
and APDP–
Diabetes Portugal
Partners: Health
centres and
municipalities
Increased
prevalence of
type 2 diabetes
and low health
literacy levels in
the population,
especially
among those
with low
socioeconomic
status
To reduce the incidence
of type 2 diabetes
To improve the
responsiveness of
the health services to
health literacy and self-
care management
To promote healthy
lifestyles and improve
disease control
Performed
literature review
of diabetes and
health literacy
Translation
and validation
of HLQ for the
Portuguese
population
Evaluation of
organizational
responsiveness
of APDP–
Diabetes
Portugal
underway
Internal research
budgets at
APDP and NOVA
School of Public
Health
Additional
funding being
sought
Slovakia-
Phase 1
Chronic illness,
primary focus on
dialysis patients
Targets patients
from 20 dialysis
centres across
Slovakia
Specialized
dialysis centres
Lead: Department
of Health
Psychology,
Faculty of
Medicine, P.J.
Šafárik University
in Kosice
Partners:
Fresenius Medical
Care– dialysis
services
Suboptimal
adherence
of dialysis
patients to
recommended
treatment
To improve the
eciency of chronic
disease management
and responsiveness
of the health-care
system and health-care
providers
Performed
health
literacy needs
assessment
Slovak
Research and
Development
Agency
Abbreviations: CVD = cardiovascular disease, RA = rheumatoid arthritis, SpA = spondyloar thritis, COPD = chronic obstructive pulmonary disease, CIC-EC 1410
INSERM = Centre of Clinical and Epidemiological Investigations, French National Institute of Health and Medical Research, CHU = University Hospital, ICARE =
Austral Cooperative Institute of Research in Education, OIIS = Indian Ocean Health Innovation, UMC = University Medical Centre, APDP = Associação Protectora dos
Diabéticos de Portugal [Portuguese Diabetes Association], PDSA = plan, do, study, act, RCT = randomized controlled trial, HLQ = Health Literacy Questionnaire


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promising interventions to develop from small pilots to larger-
scale programmes. Moreover, the network of researchers and
clinicians from dierent backgrounds working on projects
based on similar principles oers a wealth of opportunities
for mutual support, ideas and expertise exchange. Within
the NHLDP Network, important methodological discussions
are already under way regarding robust process development
and outcome measures of the ongoing projects. Sharing and
reecting t he upcoming results of Phases 2 and 3 from multiple
projects will shed much needed light on what are potentially
generalizable processes to tackle health and inequality among
vulnerable groups in Europe, which would be hard to ascertain
from asingle project.
In conclusion, the European NHLDPs successfully apply
the Ophelia principles to generate knowledge and develop
interventions that aim to advance health and equity through
health literacy. One of the most promising aspects in all the
NHLDPs is the observed engagement from local partners
at all stages of the intervention development process. is
bodes well for the NHLDPs to generate wanted, eective
and sustainable interventions that have a lasting eect on
NCD outcomes. Project teams also report that extensive local
capacity building is taking place. e NHLDPs currently in
the most advanced phases (Norway and Denmark) highlight
the potential of practical outcomes of the co-design phase,
such as new communication strategies and coping tools. e
long-term outcomes of the NHLDPs ability to bend the NCD
curve are still too early to predict. However, the processes of
engagement and action are promising for the future.
Acknowledgements: e authors acknowledge the project
teams in each country for their contribution to the NHLDP
Network and this paper (Table 3).
Sources of funding: Polina Putrik was supported by aNiels
Stensen Fellowship between 01/02/2018 and 31/12/2018.
Anna Aaby and Helle Terkildsen Maindal were supported
by the Danish Heart Foundation [15-R99-A5895-22939];
Central Region Denmark [1-15-1-72-13-09]; Karen Elise
Jensen’s Foundation; and Aarhus University [18296471].
Xavier Debussche was supported by GIRCI Sud-ouest
Outre-mer Hospitalier, Bordeaux, France [APITHEM 2018].
Christine Råheim Borge was supported by the Norwegian
ExtraFoundation for Health and Rehabilitation [2017/
FO147263]. Peter Kolarčik was supported by the Slovak
Research and Development Agency [APVV-16-0490].
Richard Osborne was funded in part through a National
Health and Medical Research Council (NHMRC) of
Australia Principal Research Fellowship [#APP1155125].
Ethical considerations: All individual projects described
in this paper have been individually assessed and approved
by the ethics committees of the lead organizations in
each country. All participants in each of the projects have
provided informed consent.
Conict of interest: None declared.
Disclaimer: e authors alone are responsible for the views
expressed in this publication and they do not necessarily
represent the decisions or policies of the World Health
Organization.
TABLE 3. NHLDP TE AMS
Country Project team Contact email
Denmark Helle Terkildsen Maindal, Anna
Aaby
aaby@ph.au.dk
France
(Réunion
Island)
Xavier Debussche, Maryvette
Balcou-Debussche, Emmanuel
Chirpaz, Delphine Ballet, Fanny
David, Jessica Caroupin,
Roselyne Coppens
xavier.
debussche@chu-
reunion.fr
Ireland Tim Collins, Laura Hickey, Janis
Morrissey, Sarahjane Belton,
Johann Issartel, Celine Murrin,
Clare McDermott
jmorrissey@
irishheart.ie
The
Netherlands
Annelies Boonen, Polina Putrik,
Mark Matthijs Bakker, Marc Kok,
Hanneke Voorneveld, Mart van
de Laar, Harald Vonkeman
mark.bakker@
mumc.nl
Norway Astrid Wahl, Christine Råheim
Borge, Marie H. Larsen, Marit
Andersen
chrr@lds.no
Portugal Maria Isabel Loureiro, Dulce do
Ó, Ana Rita Goes, Sónia Dias,
João Filipe Raposo
dulce.o@apdp.pt
Slovakia Peter Kolarčik, Ivana
Skoumalová, Jaroslav
Rosenberger
peter.kolarcik@
upjs.sk
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... They found it suitable as a framework to guide the generation of intervention ideas and respond to inequity in health care services. The Ophelia process has further been used as a methodological foundation for quite a few intervention projects [31][32][33], and findings show that the co-creative nature of the process can improve understanding of the needs and vulnerabilities of specific population groups in relation to health literacy [32]. A recent publication describes seven flagship European National Health Literacy Demonstration Projects (NHLDPs) conducted in different healthcare settings that focus on different non-communicable diseases but are similar in their use of the Ophelia methodological process [33]. ...
... The Ophelia process has further been used as a methodological foundation for quite a few intervention projects [31][32][33], and findings show that the co-creative nature of the process can improve understanding of the needs and vulnerabilities of specific population groups in relation to health literacy [32]. A recent publication describes seven flagship European National Health Literacy Demonstration Projects (NHLDPs) conducted in different healthcare settings that focus on different non-communicable diseases but are similar in their use of the Ophelia methodological process [33]. ...
... The HeLP program is expected to result in new knowledge of pregnant women's health literacy needs, as well as the development, implementation, and evaluation of a health literacy intervention for antenatal care, which has the potential to accommodate and respond to different levels of health literacy among pregnant women. We expect that the application of the Ophelia process will guide the co-design process successfully, entail large engagement from stakeholders and increase practical outcomes, which will benefit pregnant women, their partners, and their unborn child [30,31,33]. ...
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A pregnant woman needs adequate knowledge, motivation, and skills to access, understand, appraise, and apply health information to make decisions related to the health of herself and her unborn baby. These skills are defined as health literacy: an important factor in relation to the woman’s ability to engage and navigate antenatal care services. Evidence shows variation in levels of health literacy among pregnant women, but more knowledge is needed about how to respond to different health literacy profiles in antenatal care. This paper describes the development protocol for the HeLP program, which aims to investigate pregnant women’s health literacy and co-create health literacy interventions through a broad collaboration between pregnant women, partners, healthcare providers, professionals, and other stakeholders using the Ophelia (Optimising Health Literacy and Access) process. The HeLP program will be provided at two hospitals, which provide maternity care including antenatal care: a tertiary referral hospital (Aarhus University Hospital) and a secondary hospital (the Regional Hospital in Viborg). The Ophelia process includes three process phases with separate objectives, steps, and activities leading to the identification of local strengths, needs and issues, co-design of interventions, and implementation, evaluation, and ongoing improvement. No health literacy intervention using the Ophelia process has yet been developed for antenatal care.
... The Irish Heart Foundation (IHF) Schools Health Literacy project, which is a registered World Health Organisation (WHO) National Health Literacy Demonstration Project [30], is focused on co-producing a school-based health literacy intervention with and for young people aged 12-16 years old from socioeconomically disadvantaged communities. The timing of this project has also coincided with a renewed focus on wellbeing within the Irish school system [31] and the publication of Irish research that has stressed the importance of positioning young people at the centre of the learning experience in curriculum development [32]. ...
... However, there is huge value in centring on the young person's voice and learning about their life experience. Although there are varying degrees of engagement in participatory research [36], co-design is commonly understood to present an opportunity for meaningful end-user engagement throughout the research process [30]. In the context of schools and young people, co-design refers to inviting the school community and external stakeholders to participate in a design or problem-solving process, and, crucially, all ideas and knowledge are equally appreciated throughout the process [37]. ...
... This implies that the transmission of knowledge is perhaps not enough without a consideration of whether students want to learn and what they want to learn about [16]. Learning activities, which are carried out through interactive tasks and are focused on context specific learning, may improve adolescents' ability to obtain, understand and critically assess information [30], ultimately leading to improved health literacy and potentially positive health behaviour change [51]. Students gave suggestions of specific activities such as: structured debates, role play, goal setting and developing a variety of coping strategies. ...
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The aim of this study was to initiate a co-design process with adolescents to inform the development of a targeted health literacy intervention for implementation in designated socioeconomically disadvantaged post-primary schools in Ireland. Purposely developed vignettes were explored in a series of eight workshops that were conducted separately with staff (n = 26) and students (n = 33) across four schools. Data was analysed using content analysis. A number of key health topics were identified as important and influential for the participants in this context: food choices, mental health and wellbeing, physical activity and sedentary behaviour, sleep and substance misuse. Participants also suggested many health-related capacity building actions. Participants recognized that many of these health topics and capacity building actions were intertwined and also highlighted that some of these actions may be more feasible and/or impactful than others. For example, students and school staff both indicated the need to use relevant, applied and engaging approaches to improve health literacy and subsequent health behaviour. The co-design process adopted empowered stakeholders to actively engage in the design and development of future intervention strategies, which may increase the likelihood of acceptability, effectiveness and sustainability of the resulting intervention.
... People with lower health literacy may have difficulties understanding health information and participating in healthcare consultations, which reduces their autonomy in self-care and decision-making [7,8]. Optimizing people's health literacy has the potential to improve health and well-being and reduce health inequities [9,10]. ...
... The HLQ has been shown to have robust psychometric properties in its original version [21,22], as well as across European cultures [23][24][25][26][27][28][29][30][31] and in some Asian and African cultures [32][33][34], supporting the initial nine-factor model and thus confirming its construct validity for use in a variety of settings. To allow assessment in communities and across specific populations with the aim of adaptation of services and structures to the health needs of people struggling with disease management or prevention, the HLQ has been translated and undergone validity testing in different countries and underlies the work done in the scope of the WHO National Health Literacy Demonstration Projects, in which Portugal is involved [10]. Therefore, the adaptation and testing of the HLQ to European Portuguese is essential to demonstrate that it is culturally appropriate and psychometrically robust in this new context, providing researchers, health service providers, and policy makers with important information on its performance in this setting. ...
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Background: Health literacy is considered a determinant of self-management behaviors and health outcomes among people with diabetes. The assessment of health literacy is central to understanding the health needs of a population. This study aimed to adapt the Health Literacy Questionnaire (HLQ) to the Portuguese context and to examine the psychometric properties of a population of people with diabetes. Methods: Data were collected using a self-administrated questionnaire from 453 people with diabetes in a specialized diabetes care unit. Analysis included item difficulty level, composite scale reliability, and confirmatory factor analysis (CFA). Results: The HLQ showed that the items were easily understood by participants. Composite reliability ranged from 0.74 to 0.83. A nine-factor CFA model was fitted to the 44 items. Given the very restricted model, the fit was quite satisfactory [χ2wlsmv = 2147.3 (df = 866), p = 0.001; CFI = 0.931, TLI = 0.925, RMSEA = 0.057 (90% C.I. 0.054-0.060), and WRMR = 1.528]. Conclusion: The Portuguese version of the HLQ has shown satisfactory psychometric properties across its nine separate scales in people with diabetes. Given the strong observed properties of the HLQ across cultures, languages, and diseases, the HLQ is likely to be a useful tool in a range of Portuguese settings.
... It is also a model of collaboration that builds on local knowledge and wisdom to develop health literacy-informed interventions directly based on the needs identified within a community. [30][31][32][33][34] A capacity building approach is used to support and enable organisations and health services to identify health literacy strengths and needs, codesign and develop interventions, and then implement and evaluate those interventions. [35][36][37] Ophelia has three phases (figure 1). ...
... int/ groups/ gcm). 34 Rationale Despite having provided information, services and resources for more than 35 years, CCA continues to seek to understand the experiences of people with IBD and to improve how it supports people to manage their health. A health literacy approach that has a focus on the diversity of health literacy strengths, limitations and preferences in the community can reveal the types and formats of health information and services that are needed, as well as barriers to health information and services for members of diverse communities. ...
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Introduction: Non-government organisations (NGOs) often represent people who are underserved or experiencing vulnerability. Crohn's & Colitis Australia (CCA) is aware that many Australians with inflammatory bowel disease (IBD) are not reached by current communication and engagement activities. The aim of the CCA IBD project is to implement the Optimising Health Literacy and Access (Ophelia) process over 3 years to collaboratively codesign ways to improve delivery of information, services and resources for people with IBD and their carers. Methods and analysis: Health literacy and other data for phase 1 will be collected using the Health Literacy Questionnaire, eHealth Literacy Questionnaire, IBD-related questions and qualitative interviews with people with IBD and their carers to ascertain their lived experience. Quantitative data will be analysed using descriptive statistics and cluster analysis. Identified clusters will be combined with qualitative data to develop vignettes (narratives of people's experiences of living with IBD) for stakeholder workshops to generate ideas for useful, accessible and sustainable solutions for identified health literacy needs. Selection and testing of health literacy actions happens in phase 2 and implementation and evaluation in phase 3 (2021-2023). Outcomes of this project include giving voice to people living with IBD, their carers and frontline healthcare practitioners. Genuine codesign informs the development and implementation of what is needed and wanted to improve access to and availability and quality of information and resources that support people to manage their health. There is potential for other NGOs to use the CCA Ophelia model in other health contexts to improve engagement with and understanding of the needs of the people they serve and to reduce health inequalities and improve health outcomes. Ethics and dissemination: Ethics approval for Ophelia phase 1 has been obtained from the Human Research Ethics Committee of Swinburne University of Technology (Ref: 20202968-4652) and by the South West Sydney Local Health District Research and Ethics Office for the purposes of questionnaire recruitment at Liverpool Hospital (Ref: 20202968-4652). Dissemination of the study findings will be the national codesign process and ownership development across the CCA community and through the genuine engagement of clinicians and relevant managers across Australia. The model and process will be directly distributed to international IBD associations and to other NGOs. It will also be disseminated through publication in a peer-reviewed journal, conference presentations and public reports on the CCA and Swinburne University of Technology website.
... The HLQ has been translated into more than thirty languages and used with very different population groups including: patients with chronic conditions in a range of European countries contributing to World Health Organisation sponsored Health Literacy Demonstration Projects, rural fishing communities in Egypt, health science students in Nepal, Urdu-speaking Pakistani migrants living predominantly in the eastern states of Australia, and Aboriginal and Torres Strait Islander peoples with chronic disease in a remote city in northern Australia. [63][64][65][66][67] Future studies should be conducted to replicate the present CFA modelling (in particular to replicate the structure of the second-order and bifactor models) in the widely varying contexts in which the questionnaire is used. ...
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Objectives Self-report measures of health literacy frequently encompass a group of conceptually distinct but related domains scored as either a single scale or separately for each domain. Psychometric studies of the 44-item Health Literacy Questionnaire, scored as nine separate scales, typically report the results of correlated factors confirmatory factor analyses as validity evidence. However, some scales are quite strongly correlated, raising the question of whether there is sufficient discriminant validity to warrant separate scoring. This psychometric study aims to contrast the results of fitting higher-order and bifactor models as alternative options to illuminate the issue. Methods Correlated factors, higher-order and bifactor confirmatory factor analysis models were fitted to an Australian sample of responses to the Health Literacy Questionnaire (N = 813) using Bayesian confirmatory factor analysis methods. Results All models representing a nine-factor structure for the Health Literacy Questionnaire fitted well. The correlated factors model replicated previous findings, showing inter-factor correlations between 0.19 and 0.93. A higher-order model showed relatively high loadings of all nine first-order factors on the second-order factor with particularly high loadings (⩾0.97) for three. Two bifactor models showed that the majority of Health Literacy Questionnaire items were multifactorial, each containing systematic variance from both a General Health Literacy factor and a domain-specific factor. Seven items from four scales were identified as strongly associated with the General Health Literacy factor, with item content suggesting that this factor indexes a broad sense of agency and efficacy in interacting with health-related information and healthcare providers. Conclusion Contrasting correlated factors, higher-order and bifactor models fitted to the Health Literacy Questionnaire suggest that constituent items in self-report health literacy questionnaires might be anticipated to represent at least two sources of reliable and substantive common factor variance: variance associated with General Health Literacy and variance associated with a more specific domain, suggesting that items may be ‘irreducibly’ heterogeneous. Implications for test development and validation practice are discussed.
... The results of the research will be provided to study participants, and to local stakeholders, in order to join in the HL needs assessment as part of the eLS-OIIS project, whose objective is to help adapting health services responsiveness to persons with chronic diseases in Reunion island. 32 Qualitative study First round of interviews The research involved two research assistants trained in the socioanthropological approach. The work on the interviews and analyses was built up through teamwork and regulated as the research developed, taking into account the contexts in which the participants were interviewed. ...
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Objectives Considering health literacy needs is a key component of health services responsiveness to diabetes self-management among vulnerable individuals. The purpose of this qualitative study was to provide a detailed analysis of the health literacy of people with type 2 diabetes in relation to their daily self-care practices. Design Nested qualitative study in the ERMIES randomised controlled trial testing a 2-year structured care in type 2 diabetes. First round of semidirected interviews at the beginning of the trial with thematic analysis of content. Second round at the completion with directed interviews guided by the first round’s themes together with Health Literacy Questionnaire. Settings Interviews conducted at home. Participants Forty-four (31 females/13 males, 30–79 years, glycated haemoglobin (HbA1c)≥7.5%) consecutive participants out of 100 recruited in the ERMIES trial from 4 diabetology outpatient settings (Reunion Island). Forty-two respondents to the second round interviews. Results Three poles structured into eight themes characterised practices in context: health knowledge, disease management, expertise and social support. The relationships of participants in each of the eight themes were differentiated, ranging from functional to interactive and critical. Treatment and follow-up were essentially functional, while diet and exercise remained more interactive. Social support and relationship to health professionals were important determinants of disease management. Conclusions Treatment management and disease monitoring remain primarily the job of health professionals, as opposed to diet, physical activity and social support being part of ordinary practice. Decision-making, as a shared social task, as well as resources for participation in health services, should be considered for relevant interventions in type 2 diabetes. Trial registration number NCT01425866 .
... From a public health perspective, there is a need to consider the responsiveness and adaptation of systems, services and professionals to a community's health literacy needs, especially for the most vulnerable. Experiments at the international level in the framework of the National Health Literacy Demonstration Projects (NHLDP) for chronic diseases including diabetes (Table 1) are underway based on the Ophelia (Optimise Health Literacy and Access) process [15]. The Ophelia process is based on thorough quantitative and qualitative assessment of health literacy needs for the co-design and priorization of responses that are developed and tested in the field (Box 1) [16]. ...
Article
Diabetes burden is a major long term challenge for individuals, communities, services and systems. Addressing health literacy is a key underpinning issue of health inequities and to inform services and policies in generating appropriate responses to the needs of people with diabetes. The concept of health literacy has evolved from basic functional skills in reading and numeracy to a multidimensional one encompassing the abilities and resources regarding access and accessibility to health information and services in order to maintain good health taking into account the various contexts of individuals. The importance of health literacy is pertinent given the current need to integrate the growing digital invasion and the urgent need for informed and accessible interactions with media and services (eHealth literacy). Consequently, health care services and providers, as well as policies and decision makers have to recognise and cope with diverse health literacy needs, especially for the most vulnerable. Several promising development projects are on-going in Europe and worldwide to address health (and eHealth) literacy for the co-design and scaling-up of potentially sustainable interventions and policies regarding the prevention and the management of diabetes.
... A survey conducted in Europe in 2011 found that almost one in two adults had inadequate or problematic health literacy [12]. Poor health literacy is associated with non-adherence to disease control strategies and adverse health outcomes [9,13], but may also be related to a poor motivation to adhere to protective measures against COVID-19, or even to attend to information about the pandemic. As stated by the Cognitive Mediation Model (CMM), different motivations drive people to pay more or less attention to news media and to process news information, which in the case of the pandemic could influence their willingness to perform protective behaviours [14]. ...
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To reduce the spread of COVID-19 among the population, Belgium has implemented various infection prevention and control measures over time. This study investigated the extent to which understanding of the COVID-19 measures contributed to adherence, and which personal characteristics were considered risk factors for lower adherence. It consisted of a large online survey among a sample of the population (n = 2008), representative of citizens of Belgium in terms of gender, age, province and socio-economic status. The survey was conducted in September 2020, and included questions on perceived and actual understanding of COVID-19 protective measures in place during that time, as well as past and future adherence to those measures. The results showed that both perceived and actual understanding contributed significantly to past as well as future adherence. Risk factors for perceived understanding included being male and belonging to a younger age group, while risk factors for actual understanding were speaking French (versus Dutch) and belonging to a lower socio-economic level. Communication about COVID-19 measures should put more focus on trying to improve the understanding of the measures, instead of only making them known, particularly for those who are less health literate and as such at risk of poor understanding.
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Objective: To develop a co-designed health literacy (HL)-informed intervention for people with chronic obstructive pulmonary disease (COPD) that enables them to find, understand, remember, use and communicate the health information needed to promote and maintain good health. Design: This study used a co-design approach informed by the programme logic of the Ophelia (Optimising Health Literacy and Access) process. The co-design included workshops where possible solutions for an HL-informed intervention were discussed based on an HL needs assessment study. Settings: Five workshops were performed in a local community setting in the specialist and municipality healthcare services in Oslo, Norway. Participants: People with COPD, multidisciplinary healthcare professionals (HCPs) from the municipality and specialist healthcare services, and researchers (n=19) participated in the workshops. The co-designed HL-informed intervention was based on seven focus groups with people with COPD (n=14) and HCPs (n=21), and a cross-sectional study of people with COPD using the Health Literacy Questionnaire (n=69). Results: The workshop co-design process identified 45 action points and 51 description points for possible intervention solutions to meet the HL needs of people with COPD. The final recommendation for an HL-informed intervention focused on tailored follow-up after hospitalisation, which uses motivational interviewing techniques, is based on the individual's HL, self-management and quality of life needs and is implemented in cooperation with HCPs in both the specialist and municipality healthcare services. Conclusion: During the codesign process, the workshop group generated several ideas for how to help patients find, understand, remember, use and communicate health information in order to promote and maintain good health. People with COPD need tailored follow-up based on their individual HL needs by HCPs that have knowledge of COPD and are able to motivate them for self-management tasks and help them to improve their quality of life (QOL) and decrease hospitalisation.
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Chronic diseases account for a considerable part of the strain on health care systems and are burdensome for each affected individual and their families. In recent years, the concept of health literacy has been substantially elaborated on, particularly regarding the development and implementation of interventions at different levels, efforts to improve its measurement, and the role of communities and organizations. While a range of advancements are uncontested, specific challenges still revolve around, for example, a thorough application of modern practices of health literacy that focus on societal support of health literacy strengths and response to health literacy challenges; developing, testing, and evaluating strategies for organizational health literacy responsiveness; and improving the co-design, local ownership, and integration of health literacy actions and interventions in communities experiencing vulnerability and disadvantage. This Special Issue showcases research addressing these and further aspects about developing health literacy - particularly among people with chronic diseases - by which we mean advancements in health practices, organizations, and policies that create enabling environments in which people have the necessary knowledge and feel confident accessing, understanding, and using health information and services.
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Background: The World Health Organization describes health literacy as a critical determinant of health and driver of citizen empowerment and health equity. Several studies have shown that health literacy is associated with a range of socioeconomic factors including educational attainment, financial position and ethnicity. The complexity of the health system influences how well a person is able to engage with information and services. Health organisations can empower the populations they serve and address inequity by ensuring they are health literacy responsive. The aim of this study was to develop the Organisational Health Literacy Responsiveness self-assessment tool (Org-HLR Tool), and an assessment process to support organisations with application of the tool. Methods: A co-design workshop with health and social service professionals was undertaken to inform the structure of the tool and assessment process. Participants critiqued existing self-assessment tools and discussed the likely utility of the data they generate. A review of widely used organisational performance assessment tools informed the structure and self-assessment process. The Organisational Health Literacy Responsiveness (Org-HLR) Framework (with seven domains/24 sub-domains) provided the structure for the assessment dimensions of the tool. The performance indicators were drawn from raw data collected during development of the Org-HLR Framework. Results: Twenty-two professionals participated in the workshop. Based on the feedback provided and a review of existing tools, a multi-stage, group-based assessment process for implementing the Org-HLR Tool was developed. The assessment process was divided into three parts; i) reflection; ii) self-rating; and iii) priority setting, each supported by a corresponding tool. The self-rating tool, consistent with the Org-HLR Framework, was divided into: External policy and funding environment; Leadership and culture; Systems, processes and policies; Access to services and programs; Community engagement and partnerships; Communication practices and standards; Workforce. Each of these had 1 to 5 sub-dimensions (24 in total), and 135 performance indicators. Conclusions: The Org-HLR Tool and assessment process were developed to address a gap in available tools to support organisations to assess their health literacy responsiveness, and prioritise and plan their quality improvement activities. The tool is currently in the field for further utility and acceptability testing.
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Background: For people to be able to access, understand, and benefit from the increasing digitalization of health services, it is critical that services are provided in a way that meets the user's needs, resources, and competence. Objective: The objective of the study was to develop a questionnaire that captures the 7-dimensional eHealth Literacy Framework (eHLF). Methods: Draft items were created in parallel in English and Danish. The items were generated from 450 statements collected during the conceptual development of eHLF. In all, 57 items (7 to 9 items per scale) were generated and adjusted after cognitive testing. Items were tested in 475 people recruited from settings in which the scale was intended to be used (community and health care settings) and including people with a range of chronic conditions. Measurement properties were assessed using approaches from item response theory (IRT) and classical test theory (CTT) such as confirmatory factor analysis (CFA) and reliability using composite scale reliability (CSR); potential bias due to age and sex was evaluated using differential item functioning (DIF). Results: CFA confirmed the presence of the 7 a priori dimensions of eHLF. Following item analysis, a 35-item 7-scale questionnaire was constructed, covering (1) using technology to process health information (5 items, CSR=.84), (2) understanding of health concepts and language (5 items, CSR=.75), (3) ability to actively engage with digital services (5 items, CSR=.86), (4) feel safe and in control (5 items, CSR=.87), (5) motivated to engage with digital services (5 items, CSR=.84), (6) access to digital services that work (6 items, CSR=.77), and (7) digital services that suit individual needs (4 items, CSR=.85). A 7-factor CFA model, using small-variance priors for cross-loadings and residual correlations, had a satisfactory fit (posterior productive P value: .27, 95% CI for the difference between the observed and replicated chi-square values: -63.7 to 133.8). The CFA showed that all items loaded strongly on their respective factors. The IRT analysis showed that no items were found to have disordered thresholds. For most scales, discriminant validity was acceptable; however, 2 pairs of dimensions were highly correlated; dimensions 1 and 5 (r=.95), and dimensions 6 and 7 (r=.96). All dimensions were retained because of strong content differentiation and potential causal relationships between these dimensions. There is no evidence of DIF. Conclusions: The eHealth Literacy Questionnaire (eHLQ) is a multidimensional tool based on a well-defined a priori eHLF framework with robust properties. It has satisfactory evidence of construct validity and reliable measurement across a broad range of concepts (using both CTT and IRT traditions) in various groups. It is designed to be used to understand and evaluate people's interaction with digital health services.
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Background Health literacy may constitute a modifiable determinant of health behaviour and affect cardiovascular disease prevention. This study investigates the associations between health literacy and health behaviour as well as health status. Design A cross-sectional study on a population-based sample of people with acute myocardial infarction, angina pectoris or stroke (N = 3116). Methods Health literacy was assessed using two dimensions from the Health Literacy Questionnaire: ‘understanding health information’ and ‘engaging with healthcare providers’. Health behaviour included physical activity, dietary habits, smoking, alcohol consumption and body mass index. Health status was examined using Short Form Health Survey 12 version 2 (four-week recall) (physical and mental components). We used regression analyses to examine the associations. Results ‘Understanding health information’ was inversely associated with physical inactivity (odds ratio (OR) 0.48 (0.39;0.59), unhealthy diet (OR 0.64 (0.47;0.88)), underweight (OR 0.43 (0.21;0.89)) and obesity (OR 0.79 (0.63;0.99)). ‘Engaging with healthcare providers’ was inversely associated with physical inactivity (OR 0.64 (0.53;0.77)), less than healthy diet (OR 0.79 (0.64;0.96)) and daily smoking (OR 0.81 (0.66;1.0)). An increase in ‘understanding health information’ as well as ‘engaging with healthcare providers’ was associated with an increase in both physical and mental health status. Conclusions The findings suggest that aspects of health literacy are associated with health status and health behaviour in cardiovascular patients and should be considered in interventions regarding cardiovascular disease prevention.
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Background End-stage kidney disease patients undergoing haemodialysis are prescribed with multiple complex regimens and are predisposed to high risk of medication nonadherence. The aims of this study were to explore factors associated with medication adherence, and, to examine the differential perspectives on medication-taking behaviour shown by adherent and nonadherent haemodialysis patients. Methods A qualitative exploratory design was used. One-on-one semi-structured interviews were conducted with 30 haemodialysis patients at the outpatient dialysis facility in Hobart, Australia. Patient self-reported adherence was measured using 4-item Morisky Green Levine scale. Interview transcripts were thematically analysed and mapped against the World Health Organization (WHO) determinants of medication adherence. Results Participants were 44–84 years old, and were prescribed with 4–19 medications daily. More than half of the participants were nonadherent to their medications based on self-reported measure (56.7%, n = 17). Themes mapped against WHO adherence model comprised of patient-related (knowledge, awareness, attitude, self-efficacy, action control, and facilitation); health system/ healthcare team related (quality of interaction, and mistrust and collateral arrangements); therapy-related (physical characteristics of medicines, packaging, and side effects); condition-related (symptom severity); and social/ economic factors (access to medicines, and relative affordability). Conclusions Patients expressed a number of concerns that led to nonadherence behaviour. Many of the issues identified were patient-related and potentially modifiable by using psycho-educational or cognitive-behavioural interventions. Healthcare professionals should be more vigilant towards identifying these concerns to address adherence issues. Future research should be aimed at understanding healthcare professionals’ perceptions and practices of assessing medication adherence in dialysis patients that may guide intervention to resolve this significant issue of medication nonadherence. Electronic supplementary material The online version of this article (doi:10.1186/s12882-017-0583-9) contains supplementary material, which is available to authorized users.
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Background The need for healthcare strengthening to enhance equity is critical, requiring systematic approaches that focus on those experiencing lesser access and outcomes. This project developed and tested the Ophelia (OPtimising HEalth LIteracy and Access) approach for co-design of interventions to improve health literacy and equity of access. Eight principles guided this development: Outcomes focused; Equity driven, Needs diagnosis, Co-design, Driven by local wisdom, Sustainable, Responsive and Systematically applied. We report the application of the Ophelia process where proof-of-concept was defined as successful application of the principles. Methods Nine sites were briefed on the aims of the project around health literacy, co-design and quality improvement. The sites were rural/metropolitan, small/large hospitals, community health centres or municipalities. Each site identified their own priorities for improvement; collected health literacy data using the Health Literacy Questionnaire (HLQ) within the identified priority groups; engaged staff in co-design workshops to generate ideas for improvement; developed program-logic models; and implemented their projects using Plan-Do-Study-Act (PDSA) cycles. Evaluation included assessment of impacts on organisations, practitioners and service users, and whether the principles were applied. ResultsSites undertook co-design workshops involving discussion of service user needs informed by HLQ (n = 813) and interview data. Sites generated between 21 and 78 intervention ideas and then planned their selected interventions through program-logic models. Sites successfully implemented interventions and refined them progressively with PDSA cycles. Interventions generally involved one of four pathways: development of clinician skills and resources for health literacy, engagement of community volunteers to disseminate health promotion messages, direct impact on consumers’ health literacy, and redesign of existing services. Evidence of application of the principles was found in all sites. Conclusions The Ophelia approach guided identification of health literacy issues at each participating site and the development and implementation of locally appropriate solutions. The eight principles provided a framework that allowed flexible application of the Ophelia approach and generation of a diverse set of interventions. Changes were observed at organisational, staff, and community member levels. The Ophelia approach can be used to generate health service improvements that enhance health outcomes and address inequity of access to healthcare.
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The incidence of end-stage renal disease (ESRD) continues to vary substantially between the countries in Europe that contribute data to the ERA-EDTA Registry. Differences can be attributed to socioeconomic factors and prophylaxis programs for patients with chronic kidney disease (CKD) and may also express real differences in CKD incidence. Recently, age-adjusted ESRD incidence has begun to fall in many countries, probably related to improved prophylaxis. However, absolute rates may increase, partly due to socioeconomic advances in countries with a low gross domestic product and partly due to continuing increases in the proportion of elderly patients. Prevalence rates are expected to continue to increase, mainly due to increases in relative transplant prevalence, improved graft survival times and continuing improvements in both dialysis and transplant patient survival. Overall treatment results continue to improve.
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Health literacy profiles in type 2 diabetes: the ERMIES-Ethnosocio study Introduction: Health literacy refers to the competences and resources required by individuals to meet the complex demands of health in modern society. This paper describes and analyses the health literacy profiles of type 2 diabetic patients included in a 2-year long self-management education programme. Methods: Nested in the ERMIES randomized controlled trial conducted in Reunion island, the ERMIES Ethnosocio study explored health literacy by means of two complementary approaches: description of health literacy profiles via the French version of the multidimensional “Health Literacy Questionnaire”, and a socio-anthropological perspective based on 40 semi-structured interviews carried out in 2012 and then in 2015. Results: The results highlight the existence of 8 constitutive variables in the management of type 2 diabetes in an ordinary context: diet, physical activity, treatment and monitoring of disease (disease management), access to knowledge and skills (health knowledge), relationships with health professionals and social support (expertise, support and social network). They also emphasize the differentiated relationships of individuals to each of these variables, ranging from functional to interactive or critical “levels”. Discussion: Considering the development of health literacy with patients and health professionals, and by questioning educational and therapeutic interventions as differentiating processes, this research opens up new perspectives for the approach to social inequalities in health. The combination of social sciences, medical sciences and public health is proving fruitful and potentially operative, provided that the definitions, methods, and strengths and limitations of selected prospects are clearly defined.
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Significance Inequalities in mortality and morbidity among socioeconomic groups are a highly persistent phenomenon despite having been the focus of public health policy in many countries. The United States has recently witnessed a widening of health inequalities due to rising mortality and morbidity among the lowly educated. Our study shows that, despite the financial crisis, most European countries have experienced an improvement in the health of the lowly educated in recent years. In Eastern Europe, this even represents a reversal as compared with previous decades. The 2008 financial crisis has had mixed effects without widening health inequalities. Our results suggest that European countries have been successful in avoiding an aggravation of health inequalities.
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Objective: To explore whether age, gender or education influence the time until initiation of the first bDMARD in patients with RA. Methods: Data from the Norwegian Register of DMARDs collected between 2000 and 2012 were used. Only DMARD-naïve patients with RA starting their first conventional synthetic DMARD were included in the analyses. The start of the first bDMARD was the main outcome of interest. Cox regression analyses were used to explore the impact of education, age and gender on the start of a first bDMARD, adjusting for confounders, either at baseline or varying over time (time-varying model). Results: Of 1946 eligible patients [mean (s.d.) age: 55 (14) years, 68% females], 368 (19%) received a bDMARD during follow-up (mean 2.6 years). In the baseline prediction model, older age [Hazard Ratio (HR) 0.97, 95% CI: 0.96, 0.98], lower education [HR = 0.76 and 0.68 for low and intermediate education levelsvscollege/university education, respectively (P = 0.01)] and female gender [only in the period 2000-03, HR = 0.61 (95% CI: 0.41, 0.91)] were associated with a lower hazard ratio to start a bDMARD. The time-varying model provided overall consistent results, but the effect of education was only relevant for older patients (>57 years) and became more pronounced by the end of the decade. Conclusions: Less educated and older patients have disadvantages with regard to access to costly treatments, even in a country with highly developed welfare like Norway. Females had lower access in the beginning of the 2000s, but access had improved by the end of the decade.