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ТОМ 5 | ВЫПУСК 2–3 | ИЮНЬ–СЕНТЯБРЬ 2019 Г. | 123–329ПАНОРАМА ОБЩЕСТВЕННОГО ЗДРАВООХРАНЕНИЯ
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 specically focuses on reducing
premature mortality from NCDs by athird 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
to73.4% of total deaths in 2017 (2).NCDs aect 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 denitions of
health literacy have been proposed over the last decade.
A particularly comprehensive denition – 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 oen le unheard (10). When
interventions fail to address the specic 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 oen 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 eective interventions and
improve the reach and impact of interventions currently in
place. As health literacy is associated with health outcomes
through d ierent pathways (11), mult ilevel solutions of adiverse
nature are required. By genuinely and eectively involving all
stakeholders, including vulnerable groups, interventions are
likely to be more appropriate for awider 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
ofNCDs (GCM/NCD) through its Global Working Group3.3
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 alocal
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
adiversity of NCDs and at dierent 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 identied 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 adiverse 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 reect on the vignettes,
utilizing local wisdom to address the identied challenges,
needs and strengths of arange 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). Amore thorough
description of the dierent 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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aEuropean 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 dierent 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 briey
introduce the seven projects below.
NHLDP DENMARK
e Heart Skills Project in Denmark aims to develop specic
health literacy interventions targeting participation and
health outcomes in people referred to acardiac 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 proles 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 ahealth 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 diculties
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 aprimarily 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 aect achild’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
identied as acritical factor in preventing NCDs and addressing
heath inequalities, there is little research exploring the
eectiveness 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 ahealth 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 ahospital 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 aclinically 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 aremarkable 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), adisease 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 identied 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-ecacy,
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 ahealth literacy intervention that is currently
being tested in comparison to the standard care in Phase 3.
Aer 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. Eects on
hospital readmission, healt h literacy, self-management, quality
of life and health expenditure are currently being investigated
in arandomized 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 ahealth 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 proles 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 Phase1 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
athorough diagnosis of needs, identication 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
proles will be used to guide the process to improve health-
care eciency 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, 4–6). 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 insuciently 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 adierent stage, they each highlight specic 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
eects 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 eorts to undertake needs assessments in
multiple settings to get data specic 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
amultilevel approach (Principle 8) is exemplied 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 awell-integrated comprehensive
strategy and bodes well for their long-term impact, aer the
initial project period comes to aclose.
e NHLDP Network oers 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
arecommended
cardiac
rehabilitation
programme
To develop aspecic
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
aprivate 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
aresult 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
acurriculum-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
atechnology
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 diculties
in coping
To develop and evaluate
ahealth 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
anational 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
eciency 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 dierent backgrounds working on projects
based on similar principles oers 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
reecting 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 asingle 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, eective
and sustainable interventions that have a lasting eect 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 aNiels
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.
Conict 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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