Shaping the future - EULAR
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Issue 5 • 2019 Spring
HPR News
Newsletter of the Health Professionals in Rheumatology
Shaping the future
Prof. Iain McInnes reveals his enthusiasm as he prepares to step into the EULAR President’s role at the close of the
annual congress in June
It is with great excitement – and perhaps a little European rheumatology has led in many areas
trepidation – that I approach the presidency of of research globally – delivering impact at
EULAR commencing in June 2019. EULAR is a multiple levels for patients. Recently, health
remarkable organisation comprising three pillars: professionals contributed significantly, with
namely patients (PARE), health professionals in other EULAR pillars, to the generation of the
rheumatology (HPRs) and rheumatologists. This RheumaMap. This public document lays out
is a rather unique structure for a medical society the major challenges facing the RMD field and
in Europe and offers extraordinary potential proposes research priorities to all stakeholders,
for us to recognise the major challenges that including especially politicians and funders.
face people with rheumatic musculoskeletal
Empowering the next generation
diseases (RMDs), and co-operatively address
them as a consequence. Working together, A priority going forward is now to create a
EULAR has excelled in generating treatment EULAR Europe-wide Research Centre – virtual
recommendations, classification criteria for our in nature but with excellence at its heart. By
major diseases and points to consider around a this means, we will provide the necessary
range of clinical problems and opportunities. HPRs networks, capabilities, data science, training
have been closely engaged in each endeavour. and capacity building to empower the next
generation of investigators in RMD research.
Bringing new faces to the table
This will create outstanding possibilities for
Having the patient voice at our core, and the inherent partnership of health health professionals from across Europe, to participate and lead projects and
professional, scientist and medical researchers, maximises the likelihood of programmes dealing with the most important questions
success. It is something upon which we must now build further by increasing of our times. Please join this exciting initiative – bring
inclusion of, and energetic participation by, health professionals in our your ideas and your skills to shape the future! RheumaMap
A Research Roadmap to transform
programmes. Especially, we seek to bring new faces to the table and, in this the lives of people with Rheumatic
and Musculoskeletal Diseases
respect, it is essential that EULAR is outward looking and inclusive going As a final thought, a new initiative that I hope will
Prepared by a European League Against Rheumatism Taskforce
forward. Critically, we must expand the number of health professionals across emerge in this next presidency is an increasing sense
Europe contributing to RMD care – their central role in delivering clinical of the importance of the global picture – RMDs afflict
excellence is now clear; our efforts to further improve this role is evidenced in people in all parts of the world. Especially in lower-
several exciting ongoing initiatives of the EULAR HPR Standing Committee. middle income countries (LMIC), clinical care is limited
Moreover, HPRs are increasingly innovating exciting and contemporary and RMDs barely recognised amidst so many other health imperatives.
educational initiatives – both for the professions and for patients – within the Working in local partnership, and with ambitious purpose, we plan to
EULAR School of Rheumatology. deliver educational and, eventually, clinical presence in LMICs, working
especially with AFLAR. Given the necessity for multi-disciplinary care in
News......................................................................... 1 these challenging environments, health professionals will enrich our efforts
particularly as we seek to extend the spirit of EULAR to a wider community of
The Big Interview...................................................... 6 people with RMDs.
Spotlight on............................................................... 8
EULAR Public Affairs.............................................. 11
News from the patient network............................. 12
HPR education........................................................ 13
Educational visits..................................................... 16
Congress 2019........................................................ 19
HPR News 1
News
Overcoming barriers to Get in touch
OA hand exercises
Welcome to your spring
newsletter. This time the focus
is on diversity – understanding
By Els van den Ende and Krysia Dziedzic that every health professional
funding to produce two in rheumatology (HPR) or
short English-speaking patient is unique. Recognising
videos with the aim of and respecting diversity in age,
translating the EULAR race, gender, disability and HPR
recommendations into specialities (to name just some
something practically areas) can affect how services are
helpful to implement best developed, organised, delivered
practice for hand OA. and whether they are effectively
Once ready, these videos received.
will be freely accessible
Els van den Ende Krysia Dziedzic
on YouTube for health The articles in this issue consider
Recently, the 2018 update of the EULAR professionals and patients to access. the varied issues of diversity. On
recommendations for the management of hand page 5, Tanja Stamm considers
osteoarthritis were published following a systematic One video is devoted to general information about its importance for EULAR’s HPRs.
literature review of published evidence regarding all hand osteoarthritis and treatment options. The other Yeliz Prior shares her experience
non-pharmacological, pharmacological and surgical illustrates the most important hand exercises. Both of working in a diverse community
treatment options. Based on the evidence and expert videos will be incorporated into the updated version in the Big Interview on pages 6-7.
opinion from an international task force, overarching of the EULAR online course for health professionals. Our Spotlight on article looks
principles and recommendations were formulated. at how collaboration between
We welcome your views on the draft versions of different healthcare providers
Core elements of the EULAR recommendations for these videos and will be showing them at the HPR helps improve the co-ordination of
hand osteoarthritis (OA) include patient information, booth at the EULAR Annual European Congress of care for people with rheumatic and
hand exercises, and information on joint health Rheumatology in Madrid in June. Please visit us there musculoskeletal diseases.
and education. Therefore, health professionals in the EULAR Village. We hope you will watch the
in rheumatology play an important role in the videos and provide us with feedback. If you have any ideas for future
management of hand OA. articles, don’t keep them to
yourself. Email me at
Lack of high-quality evidence
kate@katebetteridge.me.uk
However, there is a lack of high-quality evidence
on the specific type of exercises and the specific
content of patient education. Consequently, there
is uncertainty for both patients and healthcare
professionals as to what information they should use
in supporting self-management.
To overcome this barrier, clinicians, researchers and Do you have good
patient representatives from Norway, the UK and
There are many aids which can help people with OA in their hands
news for the
the Netherlands took the initiative to EULAR to seek
newsletter?
Ever since 2000, the HPR newsletter has
provided the main information channel
of health professionals in rheumatology
within Europe. The newsletter is
published twice a year, featuring the work
of health professionals and all aspects
of multidisciplinary collaboration. Please
share tips about health professionals
theses, projects and new research
themes in the musculoskeletal field.
Prescribe the newsletter free of charge to
colleagues at
Help with the gardening Help to open cans www.eular.org/health_professionals.cfm
2 HPR News
News
Update on the work of EULAR’s HPR
Standing Committee
By Rikke Helene Moe, Chair of the EULAR Standing Committee of Health Professionals in Rheumatology
During the Winter Meeting we differences, we can help each
did some further work on ways other overcome these challenges
to develop the educational and learn from each other. This
possibilities within the HPR year, you can see one result of our
classroom in the EULAR School collaboration at a shared session
of Rheumatology. The school can called “Exercise – the Wonder
be used by health professionals to Drug” at the EULAR Congress. You
learn more online about effective can read more about the ARP on
treatments and high quality care. I the next page.
Attendees at the HPR Winter Meeting
would urge you to sign up and join
EULAR’s Standing Committee overarching EULAR ones. The now. You can read more about the Our national HPR organisations
of Health Professionals in scientific strategies are mainly in HPR classroom on page 13 of this are the foundation of our potential
Rheumatology is happy to be line with overarching strategies 3 newsletter. within EULAR, and our national
working with a growing number and 4, with the main aims being to: HPR member organisations
Learning from each other
of competent health professionals have their own sets of national
in rheumatology (HPRs) from • maintain and improve individuals’ Working together with our activities. If you do not have a
everyday life and participation in
different European countries. The fellow American HPRs makes national organisation of health
functional activities and society
increasing activity within EULAR is us stronger. The Association of professionals in rheumatology, we
• enhance individuals’ ability to self-
visible – at the EULAR Congress, manage RMDs
Rheumatology Professionals (ARP) may be able to help you form one.
and through education and and the EULAR HPRs are, to a
• support individuals to stay in, or
research, international projects, return to, work and education great extent, working towards the We, the Standing Committee
study groups, collaborations and • reduce inequality and inequity in same long-term goals – with many of HPR, wish you a very happy
recommendations. healthcare for people with RMDs. shared challenges. Despite several EULAR Congress in Madrid!
The EULAR HPRs’ Winter Meeting We ended up identifying a few
of the Scientific and Educational important areas that we need to
Sub-committees was held in prioritise in order to meet the new
Copenhagen between 27-28 strategy’s windows of opportunity.
November 2018. We worked The first two scientific themes
hard, looking at how our HPR we agreed to work on for on the
ambitions could help achieve the short term are increasing work
new overarching EULAR strategic participation and implementing
Beautiful Copenhagen
objectives for the period to 2023. physical activity.
These are summed up in these six
points:
1. EULAR School of Rheumatology
– becoming the leading provider
The HPR educational strategies
are mainly in line with overarching
strategies 1 and 3, and aim to:
Edgar Stene Prize 2019
of rheumatic and musculoskeletal Ovidiu Constantinescu from
disease (RMD) education • identify HPR educational needs
Romania has won the 2019
2. Congress – delivering outstanding • develop a comprehensive and
sessions Edgar Stene Prize competition.
evidence-based curriculum
3. Quality of care – for the addressing the varying needs of This year’s theme, “My ideal
management of people with HPRs in EULAR employer – Work without barriers
RMDs for people with RMDs”, highlights
• develop a tiered competency
4. Research – establishing a virtual
framework that allows assessment how work – paid or voluntary – is
research centre within EULAR
and certification against agreed an essential part of life. Ovidiu
5. Advocacy – contributing to standards
increasing people with RMDs’ was diagnosed with rheumatoid
participation in work • develop an implementation plan arthritis in 1996 and has been a Ovidiu Constantinescu: 2019 winner
to maximise access and uptake of
6. Governance – enabling EULAR to member of the Romanian League
delivery its strategic objectives. educational resources provided by
EULAR within the HPR School of against Rheumatism for more than in Madrid. The 2019 Edgar Stene
In beautiful Copenhagen we Rheumatology, such as materials 15 years. He will read his essay, Prize competition booklet will be
started matching our own HPR and activities included in the “An interview with a Straight available from the EULAR Village
committee strategies to the strategy. Face”, at the EULAR Congress during the congress.
HPR News 3
News
American HPRs: Embracing From the
diversity in rheumatology
with new name Chair
By Hazel L. Breland, ARP President, and Sandra J. Mintz, ARP From Rikke Helene Moe,
Immediate Past President Chair of the EULAR
Standing Committee
of HPRs
Health professionals in rheumatology (HPRs) are vital for
effective rheumatic and musculoskeletal disease (RMD) care.
We collaborate to provide the best evidence for the best
possible treatment and care at the right place and at the right
time. But we are also challenged by healthcare systems in
constant change, with workforces moving, multiculturism,
The ARP Executive Committee language issues, new evidence, technology and treatment
options, comorbidity and lifestyle challenges – and with a
The Association of Rheumatology Health Professionals (ARHP), a membership variety of specialties and extended roles.
division of the American College of Rheumatology (ACR), has changed its name.
Embracing the diversity of its 22+ types of rheumatology professionals, the
Association of Rheumatology Professionals (ARP); the Interprofessional Division
“RMDs are one of the most prevalent
of ACR is the only organisation serving the needs of the entire rheumatology groups of diseases”
community in the United States.
Let us not forget that RMDs are one of the most prevalent
The collaborative role of the interprofessional team is essential to improving the groups of diseases on the Global Burden of Disease Study
health of people living with chronic conditions within the US. The singular voice 2017 list of years lived with disability (Lancet 2018: 1789-858).
of the College, through its rheumatologists and rheumatology professionals It is a field involving many specialities and competencies that
working together, strengthens the impact of College initiatives aimed at addressing warrant effective collaboration to help people with RMDs to
the multidimensional determinant of health for over 91 million Americans with develop active approaches to improve their wellbeing and
rheumatic or musculoskeletal diseases (RMDs). help lessen the biopsychosocial burden.
Providing the best practices in rheumatologic care
HPR activity within EULAR is growing. We have task forces
Efforts to showcase the team throughout the organisation via diverse volunteer- working on developing recommendations and points
led committees, advocacy efforts and fundraising activities demonstrate the to consider. The study groups are actively engaged and
intentional collaboration within the College to ameliorate health disparities constantly come up with new proposals, ideas and projects.
by providing the best practices in rheumatologic care. Actively-engaged We take part in joint campaigns and put a lot of effort into
interprofessional ARP volunteers are responsible for the development of online delivering a high quality EULAR Congress programme. We
and in-person educational offerings, practice guidelines and tools, advocacy and have our own bursaries, grants and prizes. We can also sign
research efforts, workforce initiatives, publications and much more. This team is up for the EULAR School of Rheumatology to learn and
comprised of social workers, nurses, practice managers, pharmacists, research co- network with colleagues all year long.
ordinators, biostaticians, physician assistants, nurse practitioners, psychologists,
physical and occupational therapists, athletic trainers, dieticians, librarians and “Inspired, impressed, proud”
researchers, to name a few.
Thank you very much to all the HPRs who volunteer to share
From the broader international stage, ARP continues to jointly build opportunities their knowledge, skills, enthusiasm and time to develop all
with its interprofessional colleagues through shared educational offerings and these activities. You are remarkable in the way you take on
joint lectures. Looking to the future, we are new tasks and challenges. We should greet each other as
excited to explore how these international old friends when we meet at the EULAR Congress, and take
partnerships enable the interprofessional the opportunity to become inspired, impressed, proud and
team to rise to the occasion in meeting the updated together as a team.
needs for rheumatologic care worldwide.
You may read this on your way to Madrid, but you may not
know that we have already started planning the programme
Visit us at www.rheumatology.org for Frankfurt in 2020. Enjoy this issue of the newsletter!
4 HPR News
Vice President’s report
What health
professionals are
excellent at
We have to go beyond the usually well re-
presented professions and make sure that
the perspective of these less-typical health
professionals in rheumatology is sufficiently
represented. These could be clinical pharmacists,
biostatisticians, medical social workers, dieticians
etc. Perhaps there will be other disciplines in the
future that we are not considering at the moment.
Delivering holistic and personalised
care
Furthermore, health professionals from different
cultural backgrounds, gender and age contribute
in a valuable way to delivering holistic and
Tanja Stamm played a leading role at the 2018 EULAR Brussels Conference personalised patient care. Seeing patients from
different cultural backgrounds – and supporting
From Tanja Stamm, EULAR Vice between HPRs, the culture of care and the well- them to become effective managers of their
President representing Health being of the healthcare teams will be positively own healthcare – will be facilitated if HPRs also
influenced. represent diversity in terms of culture, personal
Professionals in Rheumatology
identity, preferences, attitudes, spirituality and
Highlighting diversity
In my opinion, health professionals in environmental factors.
rheumatology (HPRs) should be prouder – and Apart from a common identity and profession-
more aware – of what they are excellent at. specific specialities, we also need to highlight Taken together, I am convinced that we should
EULAR’s HPRs demonstrate their excellence in diversity in a wider sense. We need, for example, fully exploit our potential as a diverse group of
several projects. A good example is the project, to take the expertise, skills and knowledge of the different people and professions to successfully
led by Prof. Thea Vliet Vlieland, on developing health professions which are not so commonly collaborate with patients, rheumatologists/
common core HPR competencies from the represented in our (sub-)committees as a physicians, scientists and other important
perspective of different professions. resource. stakeholders across Europe and beyond.
Building a common understanding
Beyond the identification of core competences
Help shape future HPR EULAR
that are most relevant and suitable for all health
professions in rheumatology, I think we should
Congress programmes
also take into account that HPRs are different You can help shape the health professionals
and have specific areas in which they excel and in rheumatology (HPR) programmes
are highly specialised. We should celebrate the at future EULAR Annual European
specific expertise of each health profession and Rheumatology Congresses. By sending your
highlight the diversity (as well as similarities) session proposals to the EULAR Standing
between the professions. Committee of HPRs, you can increase
your chance of seeing your ideal session
This will foster even more multidisciplinary being featured on the HPR programme.
teamwork and build a common understanding Planning happens early so don’t hang about.
which, in turn, will lead to holistic patient Email your ideas for the 2021 congress to
care. Patients with complex health conditions, Rikke Helene Moe, Chair of the standing
experiencing lots of challenges in daily life, might committee, at rikmoe@gmail.com and
benefit most if the various expertise of health Tanja Stamm, Vice President of EULAR
professionals is used in an optimised manner. By representing HPRs, at
focusing on both the similarities and differences tanja.stamm@meduniwien.ac.at
HPR News 5
The Big Interview
A diverse challenge
Yeliz Prior is a clinical academic based in Salford, UK. Originally from Istanbul, Turkey, she settled in the UK over 19
years ago and naturalised as a British citizen. She is married to James, an epidemiologist also working in rheumatology
research, and proud mother of Max (17) and Mia (16). She talks to HPR News about meeting diverse needs
to deliver multi-national clinical research as those from minority cultures and with lower
projects, and recently became a founder and health literacy), should have equal access to
leader of the Work Rehabilitation in People understand and use health information and
with RMDs SG. I also sit on the British Health services to get early diagnosis and treatment.
Professionals in Rheumatology (BHPR) Council This would lead to better health and quality of
within the British Society of Rheumatology as life outcomes for everyone.
an Education Officer.
Secondly, in order to improve access to
What does diversity mean treatment and patient education, there is a need
to you when thinking about for cultural competence education for HPRs
rheumatology? to ensure everybody receives equitable and
effective healthcare. However, the evidence to
Diversity is an important topic when link health professionals’ cultural competence
considering the prevalence, patterns and education with patient, professional and
mechanisms in which the impact of RMDs are organisational outcomes remains limited.
investigated, access to treatment pathways Moreover, these are long standing issues
are defined, and policy and guidelines are requiring not only policy changes but also a
established. Thanks to advancements in culture shift in how we prioritise, deliver and
science and technology, we now can access evaluate service provision in healthcare. The
a wide range of health information instantly, quality of any healthcare system depends
Tell us a little about your work but this does not necessarily mean all of on the focus, motivation and diversity of the
this information is accurate, relevant or workforce.
I work as a Senior Research Fellow and understandable by all.
Director of Postgraduate Research Studies at You work in an area of the
the School of Health and Society, University of I see the issue of diversity as two-fold. First UK known for its diverse
Salford full-time and also part-time in the Mid and foremost, there is a need for policy makers
population. What challenges
Cheshire Hospitals NHS Foundation Trust as and service providers to ensure that health
an advanced clinical specialist rheumatology and social care programmes and pathways for
do you face trying to meet the
occupational therapist (OT). people with RMDs are inclusive and not only needs of people living with
available to those with the means to negotiate RMDs?
My clinical work and research are closely the system. People from disadvantaged
aligned as I am interested in patient education backgrounds, like migrants and homeless I work in an NHS Hospital in Crewe which has
and the self-management of rheumatic and individuals and hard-to-reach populations (such a large Polish population accounting 10% of
musculoskeletal diseases (RMDs), with an the locals – some of whom speak English and
emphasis on health behaviour change and use others who don’t. When I first took up my post
of digital health platforms. These span from the five years ago, I was surprised to find that we
development and testing of patient reported did not cater for alternative languages such
outcome measures (PROMs) to therapeutic as Polish when sending out patient letters to
interventions in pain and fatigue management confirm hospital appointments and provide
and online platforms to help people self- information about diagnosis and treatment
manage chronic long-term conditions. programmes. We used the Big Word telephone
interpretation system to aid consultations with
I have been a member of the EULAR Health non-English speaking patients and, although
Professionals in Rheumatology (HPR) Standing this enables translation, the process does
Committee for over three years, and I am a not quite allow for trust and a therapeutic
co-opted member of the EULAR Scientific relationship to be formed.
Committee, where I help to organise the HPR
programme for the annual congress. Over the I have had to develop new strategies to
years I have led EULAR study groups (SGs) engage patients through the use of body
Yeliz with Ulla Nordenskiöld who helped establish EULAR
such as the Occupational Therapy SG, helping HPRs language and eye-contact to communicate
6 HPR News
The Big Interview
Have you got any tips on
making interdisciplinary
working more seamless?
It is a complex process. I believe the
main principles underpinning effective
interdisciplinary team work are positive
leadership, management support to allocate
time and resources to enable communication
channels to be open, an appropriate skills
mix amongst team members and advocating
patients’ priorities in treatment outcomes.
How do you think that EULAR
Yeliz with her family: son Max, daughter Mia and husband James helps HPRs to address the
challenges of diversity?
empathy and, over time, have got pretty good from diverse communities and tailor my
at drawing diagrams to explain complex approach to communication and patient EULAR is inherently diverse in its membership
concepts such as mechanisms of pain and education to their needs. This includes training and representation across different countries,
fatigue to help patients adopt effective health other HPRs in observing and acting upon such disciplines, languages and approach to
behaviours. nuances. healthcare delivery. This offers countless
opportunities to network and collaborate
What tactics have you found to What role do you think the less with HPRs and PARE members from diverse
be most successful in finding common HPR disciplines have communities to learn from each other, conduct
solutions to providing services to play in helping people with research, identify HPRs’ training and patients’
education needs. It also offers appropriate
that make a difference? RMDs? levels of training tailored to the specific needs
I found that the most important ingredients in In the UK the rheumatology team consists of a of diverse disciplines and cultures through
a therapeutic relationship is to build trust and diverse set of HPRs including OTs, podiatrists, study groups, task forces, research grants and
prioritise patients’ goals. For example, a referral pharmacists and psychological therapists, such the School of Rheumatology – all of which are
might be for pain management, but this might as cognitive behavioural therapists, to ensure a geared towards improving healthcare delivery
be confounded by anxiety and depression. I holistic approach to enable self-management. and patient experience across all member
find helping patients to resolve the source of People with RMDs have complex needs and states collaboratively.
their distress – for example, financial difficulties all of these specialities play an important role
due to loss of employment – is more effective in addressing the day-to-day difficulties they You must have worked with
than going down the route of therapeutic are challenged with. In particular, I make a colleagues from many different
strategies only. Working with patients to stay point of asking patients about their feet and
countries. What would be your
in – or return to – work, through negotiating foot problems. More often than not I refer my
job accommodations with their employer or patients to a podiatrist for a biomechanical
top tip on adapting to new
applying for disability benefits, significantly assessment to ensure they can stand environments?
improves their ability to manage their comfortably to be able to undertake physical Thanks to EULAR I have had the opportunity to
symptoms of RMDs. activities. Similarly, it is important to involve work with colleagues from all over the world and
specialist pharmacists in their care to ensure made life long friendships. My top tip for adapting
Self-management is a big area adherence to the drug regimen, which is often to new environments is to embrace the culture
of interest for you. What have compromised due to earlier side effects or and diversity within communities of practice and
you had to do differently to misinformation. be open to change.
meet the needs of a culturally
diverse community?
Yes, for me patient education to enable self-
management is the key to any rehabilitative
intervention for people with RMDs. I strongly
advocate a patient-centred approach to
tailored self-management, which needs to
take cultural diversity as well as personal
and contextual factors into account during
assessment, intervention planning and goal
setting. This means I need to be aware of the
different needs and boundaries of individuals The EULAR community: bringing together Europe and the USA
HPR News 7
Spotlight on… Co-ordinated working
Towards better communication
between rheumatology and
primary care
Ricardo Ferreira and Andréa Marques, nurses at Centro Hospitalar e Universitário de Coimbra in Portugal, explain a
new approach to organising rheumatology services being piloted in their region
Primary healthcare professionals (PHPs) are in community health (2). This lack of knowledge administrative regions (three in continental
essential for continuity of care, especially and training might partially explain why, in spite Europe: North, Centre, South; plus two in the
for people with chronic of RMDs being responsible for autonomous regions: islands).
conditions like rheumatic and the majority of consultations
musculoskeletal diseases in primary care, PHPs are Primary care units have different structures and
(RMDs). In this article we not aware of their impact specific targets – for example focused on the
present the “Rheumatology and relevance compared to family, vulnerable groups, schools or public
Functional Co-ordinator Unit other chronic conditions, health – and are organised into healthcare
of the Centre” (UCF.RC) or such as diabetes, cardio or clusters. At the moment, this network integrates
“ReumaLinks”, a pilot initiative cerebrovascular diseases. one rheumatology department and three
being developed in Coimbra, These are also the diseases the healthcare clusters (with 72 units already
Portugal’s central region to public is more aware of. involved). The network is still growing and
promote better communication is open to the region’s other rheumatology
Promoting closer
and higher quality standards departments and primary healthcare clusters.
co-operation
of care, and to improve policy
Pivotal role in co-ordinating care
makers’ awareness of RMDs. There are other important
Ricardo Ferreira problems regarding Although the network was initially conceived
Despite the small size of rheumatology in the for GPs only, the department’s rheumatology
Portugal, an official, functional network between Portuguese healthcare system: long delays in nurses soon called for the inclusion of primary
community and hospital care does not exist. referrals – and incorrect referrals – of patients care nurses as well. They are the biggest
Knowledgeable and skilled professionals are with inflammatory arthritis, and an evident lack working force in this setting, playing a pivotal
needed in both community and hospital care of multidisciplinary care in both settings which role in co-ordinating care, and are closer to the
settings, maintaining close co-operation, centred leads to suboptimal management of RMDs and public (for example, doing home care visits).
on patients, to improve quality and safety of their associated co-morbidities. These problems Unfortunately, other HPs, such as social workers,
care. are unlikely to occur only in psychologists, physiotherapists, nutritionists
Portugal. among others, barely number more than one (of
There is a lack of graduate and each profession) per cluster – for example, one
postgraduate rheumatology After more than four decades social worker compared to 30 or 40 nurses. For
education for health organising annual rheumatology this reason, the network started with only GPs
professionals (HPs) in Europe meetings for general and nurses, although four social workers now sit
(1). This is, presumably, a practitioners (GPs), and without on the “ReumaLinks” steering committee and
greater issue in primary seeing enough improvement some physiotherapists interested in this field
care. A recent online survey in the above-mentioned areas, were present at the second workshop.
performed amongst nurses the Head of Department for
working in Portuguese primary Rheumatology came up with the The main objectives of the “ReumaLinks”
Andréa Marques
care settings (n=129) showed idea of “ReumaLinks”. It follows initiative are to:
that nurses have very low levels of confidence already-existing models used in maternity,
• improve knowledge about RMDs in primary care
in providing education to people with RMDs, childhood and diabetes – models which are well
even to the ones they have contact with the implemented across the country. • improve and maintain standards of care
most – namely people with osteoarthritis provided for RMD patients
(69%), low back pain (68%) or rheumatoid “ReumaLinks” was legally created in November • develop educational standards for HPs in RMDs
arthritis (63%) (2). Furthermore, their confidence 2017 and aims to promote closer co-operation • build partnerships with other health
did not significantly improve with greater between the rheumatology services and primary professionals in RMDs
experience in primary care or with post-graduate care units of this region. It will serve as a pilot for
• perform research.
specialisations – for example, in rehabilitation or the whole country, which is divided in five health
8 HPR News
Spotlight on
To achieve these aims, two main strategies
were/are being implemented: i) direct lines of
communication and ii) seasonal workshops.
Regarding communication, after the identification
of one GP (n=51) and nurse (n=76) per unit (Local
Links), dedicated communications (telephone,
email) to the central links were provided – that is
to the rheumatologists (n=16) and rheumatology
nurses (n=4). A special (“red”) phone line exists
for urgent occasions, such as urgent referrals.
Each central link is responsible for managing the
communications of sub-groups of the Local Links.
Workshops have specific
themes “ReumaLinks” brings people together at themed workshops
Regarding the workshops, each year a specific
theme is agreed. In the first year, “Early referrals Increasing RMD awareness manuals (for example, guiding principles for
of inflammatory arthritis” was selected, while the rheumatic disease referrals) and prevention
“Prevention of osteoporosis and osteoporotic Another major benefit of “ReumaLinks” is the flowcharts (for example, screening and follow-
fractures” was chosen for the next. On this point, increasing awareness of all health professionals, up of osteoporotic fracture risk) are being
practical workshops are being run every 3-4 patients and policy makers about rheumatic developed.
months. A workshop starts with an introduction conditions. Involving social workers in the
and discussion on the theme (symptoms steering committee and initial workshop has also This co-ordination unit is supported by local
of rheumatic conditions) for both GPs and been an important further step, although much heath governance, which gives technical support
nurses. The workshop group is then divided still needs to improve here. to implement the project (for example, allowing
by professional background, and specific and PHPs to assess risk of fracture with FRAX). In the
practical themes are discussed – for example, PHPs have recognised this co-ordination unit as future, we aim to seek support from the national
differentiating mechanical from inflammatory an important source of advice and education, health system to implement this project all over
pain for nurses, and lab tests for physicians. having encouraged different initiatives in the country.
musculoskeletal health and rheumatology in
The workshops are also used to develop primary care. This has also been demonstrated
common action programmes in a synergistic in the number of contacts that we have already
way, such as for prevention of osteoporosis, falls received from primary care, the number of
and osteoporotic fractures. We noticed that these participants in the workshops (near 100%) and
programmes were already being developed the interest from the media about the events (3).
independently, with different strategies, but
were hardly used to assess efficacy. Being able Next steps for the project include the
to discuss and improve these kind of projects involvement of patient representatives in project
between different PHPs from different units – planning and on the steering committee. We
and between them and rheumatology health will attempt to increase the participation of
professionals – during paid working hours is other health professionals by promoting local
already a major achievement. interdisciplinary meetings. Some practice
Networking helps communication
References
1. Vliet Vlieland TPM, et al. (2016). Educational needs of health
professionals working in rheumatology in Europe. RMD
Open 2016;2:e000337
2. Ferreira R, Marques A, Barbosa I (2018). FRI0735-
HPRKnowledge, confidence and educational needs of
primary care nurses’ on patient education and continuity
care in rheumatic diseases [Poster]. Annals of the
Rheumatic Diseases 2018;77:1814. https://ard.bmj.com/
content/77/Suppl_2/1814.2
3. UCF de Reumatologia do Centro: unidade pioneira em
Portugal com balanço «muito positivo». Just News. 12
Practical teaching helps people learn October 2018. https://goo.gl/fujwBS
HPR News 9
Spotlight on
An example of collaboration from France
Developing RMD physiotherapist activity in France
By Thomas Davergne, physiotherapy PhD student
As a young the capacity of physiotherapists to conduct them. This limitation to referrals is that rheumatologists need
physiotherapist doing a observation was also made elsewhere [1, 2]. to know patients who live near to a physiotherapist’s
PhD in physical activity office since the physiotherapy programme requires
focused on patients When I contacted professional physiotherapists frequent sessions. Patient’s needs, in terms of care and
with inflammatory networks via Facebook, I felt a lot of enthusiasm. I localisation, need to be properly identified.
arthritis, I wanted to work noticed that a lot of physiotherapists were looking for
specifically on these collaboration to address patients with pathologies (such Yet, other strategies that I have not explored yet appear
pathologies. To reach as inflammatory arthritis) which they were less trained to have good potential. These include contacting local
this objective, I needed to deal with. Some physiotherapists also recognised that patient associations, professional associations working
Thomas Davergne
to explore different patients with inflammatory arthritis (such as rheumatoid in rheumatology or larger patients associations, such as
strategies, each of them encompassing challenges and arthritis or ankylosing spondylitis) required specific Pro Rhumato of AFLAR in France [3], or contacting other
pointing out certain realities about beliefs and habits clinical reasoning. The patients mentioned they were health professionals, such as pharmacists, who have
around collaboration. more comfortable addressing queries to therapists who contact with patients with inflammatory arthritis.
have been specifically trained in their disease area. References
First, I acknowledged that there were misconceptions 1. Iversen MD, Fossel AH, Daltroy LH. Rheumatologist–patient
communication about exercise and physical therapy in the
about exercises and the activity of physiotherapists. Direct contact has proven to be an efficient way of
management of rheumatoid arthritis. Arthritis Care Res.
I reached out to rheumatologists and medical building collaboration. Another strategy I explored 1999;12(3):180-92.
doctors close to my office in Paris, and told them was prospecting with rheumatologists during 2. Munneke M, De Jong Z, Zwinderman A, Ronday H,
Van den Ende C, Vliet Vlieland T, et al. High intensity
about my work philosophy (which is in line with the conferences I attended. I believe this route has been exercise or conventional exercise for patients with
latest recommendations). It appeared that some the most productive: it showed me that discussing rheumatoid arthritis? Outcome expectations of patients,
rheumatologists, and physiotherapists. Ann Rheum Dis.
rheumatologists were still sceptical or poorly informed and exchanging directly with someone is the best 2004;63(7):804-8.
about the usefulness of aerobic exercises – or about way to build collaboration. However, a potential 3. AFLAR: www.aflar.org/
An example of co-ordination from Finland
A National Musculoskeletal Programme
By Jaro Karppinen, Professor of Physical and Rehabilitation Medicine, University of Oulu and Finnish Institute of
Occupational Health, Oulu, and Marja Kinnunen PhD, Executive Manager, Finnish Musculoskeletal Association
The Finnish population patient organisations that provide peer support, in public and private healthcare. First impressions
is one of the fastest- information and easily accessible exercise classes. The from professionals indicate that direct access is cost-
aging populations in use of the national evidence-based clinical practice effective and enables patients with RMDs the optimal
Europe and, as we “Current Care Guidelines” is highly recommended amount of rehabilitation at the optimal time.
know, the incidence and is used by healthcare professionals in their daily
of rheumatic and work. RMDs issues are still a
musculoskeletal leading cause of sick
disorders (RMDs) Nationally, it has long been recognised that the leave, early retirement
tends to rise with age. development of efficient care pathways is vital in and loss of functional
Jaro Karppinen
Similarly, the prevalence healthcare, but a lack of physicians – especially in capability. In order to
of RMD risk factors, such remote areas – has hindered patients’ access to care. raise awareness and
as overweight/obesity and sedentary lifestyles, have Direct access to physiotherapists is expanding, both promote decision
increased and are already more prominent among making and evidence-
children. Thus, we need to support people’s physical based practice, the
performance across all age groups. steering group of the Marja Kinnunen
National Musculoskeletal
In Finland, great work has been done in many sectors Programme started its work in February 2019. The
already. For example, all 312 municipalities have previous programme, 2008-2015, raised awareness
a legal obligation to organise healthcare, and to but it needs updating. The steering group includes
follow the health and wellbeing development of their members from medical professionals, members
inhabitants. Also, the municipalities must take health from the National Institute of Health and Welfare, the
Anu Vehviläinen, Minister of Local Government and Public
promotion into account in all strategic planning and Reforms, opened the “Healthy musculoskeletal future in
national parliament, RMD patient organisations, and
procedures. For example, many municipalities support municipalities” seminar in September 2018 other NGOs and the municipalities.
10 HPR NewsEULAR Public Affairs
Changing public policy
inclusively
By Neil Betteridge, International Liaison Officer, Public Affairs, EULAR
As this will be my final piece for HPR News in vocal in the development of disability policies.
my capacity as International Liaison Officer, Disability is a social rather than a medical
Public Affairs, I am delighted to see this edition construct in policy terms, as it is focused on
promoting the theme of diversity. Although the removal of barriers which otherwise create
rheumatic and musculoskeletal diseases social exclusion for people with impairments.
(RMDs) can affect anyone at any age, there is a
well-established link with specified population The overall priority for the public affairs function
subgroups, for example women, refugees and in this period is work, which means we will be
people from lower socio-economic groups, as working with HPR colleagues even more closely
well as the better known association with older going forward, with common goals around
people. Therefore, to change public policy in maximising work participation for people with
favour of people with RMDs and those health RMDs. As all HPRs know, many who are most
professionals in rheumatology (HPRs) who care at risk of occupationally-related RMD injuries
for them, the only approach which makes sense or conditions are in manual and low income
is an inclusive one which addresses issues of Neil Betteridge
jobs, people who are not necessarily the classic
equity and does not just maintain the status quo. “expert patients” who would seek help early
highlight that many will require training or and be articulate about their needs.
“The only approach which makes some ongoing support to become effective
contributors. Barriers to enjoying the benefits So a commitment to raising awareness amongst
sense is an inclusive one” of this sort of patient engagement can include policymakers and the general public is important
training in technical language, and / or access to here, both to demonstrate the scale and nature
Issues of equal access to healthcare emerged suitable technology necessary for participation. of the problem, but also to illustrate some of
during EULAR’s World Arthritis Day conference the solutions, such as cost effective workplace
“Bringing chronic diseases to the forefront This is echoed in the second point: overcoming adaptations. One way we will draw attention to
of health innovation”. Since then, EULAR “human challenges” relates both to workforce these issues is via a photographic exhibition at
has produced a Position Paper based on the issues such as equipping HPRs with ongoing the European Parliament which will show people
conference findings which you can find at training and education which ensures they with RMDs of varying ages and backgrounds in
eular.org/public_affairs_position_papers.cfm. It optimise innovation in healthcare, but also to workplace settings. Conveying the relationship
provides considerations for the development enhancing patient self-management. The digital between these positive images, and the work
of future policy at EU, national and regional landscape is changing so quickly that each carried out by HPRs, will be a critical part of the
level. It asserts that to have the desired effect on emerging technology risks not being compatible messaging as part of our overall coalition of
individuals, societies and economies, policies with its predecessor – or successor! So we need interested parties.
need to address the following issues: to be working now towards developing common
standards for interoperability.
1. ensuring a leading role for people with
chronic diseases in healthcare innovation The third point, ensuring that big data brings
real benefits to patients, also depends upon
2. overcoming organisational and human the establishment of common standards
challenges in the introduction of innovation – for instance to ensure consistency in the
composition and use of electronic patient
3. enhancing the use of big data in healthcare records.
for the benefits of patients.
“Disability is a social rather than
All of these calls to action, which are directed
to national and EU policymakers, recognise
medical construct”
that, for some people – HPRs and patients
alike – forms of positive action are sometimes All of EULAR’s public affairs work has embedded
necessary. For example, whilst point 1 is calling within it a commitment to fairness and social
for people with RMDs to play a greater part justice. For example, our current long-term HPRs Erika Mosor (centre) and Hana Šmucrová (right) at the
in designing future health services, we also plan prioritises ensuring that our community is conference
HPR News 11News from the patient network
Combining exercise and fun
A new exercise programme created by Deutsche Rheuma-Liga, EULAR PARE’s German member, targets younger
people. Ursula Faubel and Nicole Stefan-Schick from the organisation introduce “aktiv-hoch-r”
Deutsche Rheuma-Liga (the German league Deutsche Rheuma-Liga also realised that the
against Rheumatism and Arthritis) is Germany’s majority of participants in their exercise therapy
biggest patient organisation with more than groups are older people. In order to achieve more
300,000 members. The organisation provides diversity in participants and, most of all, to reach
information and advice, and organises self-help out to younger people with RMDs, Deutsche
groups as well as exercise groups for people with Rheuma-Liga developed a new training course.
arthritis throughout Germany. The organisation The programme was drawn up by leading
also represents the interests of people with experts in sports science and rehabilitation at
different forms of arthritis in the political process, the Friedrich-Alexander University Erlangen-
raises awareness and supports research. Nürnberg, Prof. Dr. Klaus Pfeifer and Barb Heinz.
The programme is called “aktiv-hoch-r” and
One of Deutsche Rheuma-Liga’s main activities includes theoretical background, as well as course
is to provide exercise groups for people with modules and a curriculum for the trainers. The Nicole Stefan-Schick
arthritis. Group exercise in warm water or in a development of the programme was sponsored
gymnastics room, known as “Funktionstraining” in by the German statutory pension insurance attitude and motivation: participants learn how to
Germany, is offered to more than 12,000 Deutsche scheme Deutsche Rentenversicherung Bund. develop strategies to motivate themselves to do
Rheuma-Liga groups. Doctors can prescribe physical activity. A course consists of 12 classes of
“Inspire participants to make a 90 minutes. The programme has been registered
commitment to regular physical activity” as a prevention course within the statutory health
insurance. Participants can, therefore, receive a
“aktiv-hoch-r” is an evidence-based exercise subsidy for the participation fee.
programme, which imparts knowledge of sports
science and motivational aspects. “aktiv-hoch-r” “With the benefits of new medications we easily
is not just about the physical exercises; it also forget the importance of physiotherapy and
includes educational aspects to the programme. sport,” says Dieter Wiek, Vice President of EULAR
The aim of “aktiv-hoch-r” is to inspire participants representing PARE. “This new course shows
at an early stage to make a personal commitment how you can control your activities to achieve
to regular physical activity by helping sustainability and, very importantly, meeting
them to understand the benefits for others for these varied exercises is fun.”
their long-term health.
Ursula Faubel In order to get the programme started,
The programme aims to help Deutsche Rheuma-Liga trained trainers
the training as complementary rehabilitation people with RMDs to self-motivate on a national level. Physiotherapists
measures. The prescription is usually for 12 – to continue the programme after and other health professionals with
sometimes 24 – months and the courses are paid a course has ended and to adopt a knowledge of training methods were
for by the German statutory health insurance and an active lifestyle. “aktiv-hoch-r” uses a able to participate in the training. Pilot courses
the German statutory pension insurance scheme. holistic approach, involving positive experiences for people with RMDs have been conducted, for
Physiotherapists instruct and supervise the group of movement and playful tasks. The focus is on example, in Berlin and Munich. A website
exercise, but the organisation lies in the hands of the individual capability of each participant. Even www.aktiv-hoch-r.de provides basic information
volunteers of Deutsche Rheuma-Liga. though the primary target is younger people and includes a motivational video.
with RMDs with few functional impairments, the
“Integrating regular exercise is not individual approach also allows the organisation
always easy” to reach out to people from different age groups
and diverse backgrounds.
People with rheumatic and musculoskeletal
diseases (RMDs) often know about the health The participants of “aktiv-hoch-r” classes learn
benefits of physical activity. But many studies how to move and how to exercise in a health-
show that integrating regular exercise into daily promoting way. They learn how to dose load in
life is not always as easy as it seems – especially strength and endurance exercises. They also learn
while experiencing rheumatic pain and feeling about the effects of regular physical activity on
physical limitations. the body. There is a strong focus on self-efficacy,
12 HPR NewsHPR education
EULAR HPR educational activities
Thea Vliet Vlieland, leader of the EULAR HPR Educational Sub-committee, provides an update on developments
Currently, health professionals in rheumatology Identifying barriers
(HPRs) within EULAR are active in the
development and provision of educational Other projects that are initiated by the HPR
offerings in several ways. The activities Classroom include an HPR mentoring project
are carried out via the EULAR School of and the development of a live course for HPRs
Rheumatology, EULAR’s HPR Standing on a postgraduate level.
Committee’s Educational Sub-committee and
through specific EULAR task forces. In parallel, a number of other educational
projects are carried out. A previous survey has
learned that it is not easy to reach out to HPRs
Pre-eminent provider in Eastern European countries. For this purpose,
The School of Rheumatology aims to be a pre- EULAR supports an implementation project to
eminent provider and facilitator of high-quality identify barriers and facilitators for the uptake
education for physicians, health professionals of educational offerings in Eastern European
and people with rheumatic and musculoskeletal countries and, subsequently, to develop and
diseases (RMDs). It has seven classrooms, one execute tailored implementation strategies.
of which is the HPR Classroom which is advised Thea Vliet Vlieland Another implementation project involves
by the HPR Educational Sub-committee. During the dissemination of the updated EULAR
and following the sub-committee’s twice yearly running projects relates to the enhancement and guidelines on hand osteoarthritis among health
meetings, current educational activities are update of the HPR Online Course. Many authors professionals by means of short videos.
evaluated and suggestions for new projects are across Europe are working hard to include the
made. newest insights into the course materials and To conclude, from mid 2017 a task force worked
increase the number of pictures and films. on the formulation of desired generic core
Currently, a number of projects are being Another improvement will be the inclusion of HPR competences. Such competences could
executed by the members of the HPR Classroom, a non-mandatory module on rare rheumatic well serve as the basis for an HPRs’ curriculum
supported by a number of other HPRs, PARE diseases. The 2019–2020 course will be launched on the postgraduate level. The results will be
members, rheumatologists and EULAR in mid-September and registration will be open presented at this year’s annual congress in
educationalist Catherine Haines. One of the from mid-June until the end of November. Madrid.
Study
group
meetings
EULAR Health Professionals in
Rheumatology (HPR) Study Groups are
established networks in their respective
fields and play an active part in the
research and treatment of rheumatic and
musculoskeletal diseases.
Did you know you are welcome to join
any of the study group meetings at the
EULAR Annual European Congress of
Rheumatology in Madrid in June? Get
there early though to secure a seat! See
page 19 to find out the dates, times and
locations of all the face-to-face study group
meetings.
HPR News 13You can also read
