Conference Bled, Slovenia,

November 13 & 14, 2017

 Conference Bled, Slovenia,
November 13 & 14, 2017

Opening & Welcome

Anne de Looy & Olle Ljungqvist

Conference Co-chairs
 Conference Bled, Slovenia,
November 13 & 14, 2017

Welcome by the Ministry of Health

Mojca Gobec, Director General,
Ministry of Health, Slovenia
 Conference Bled, Slovenia,
November 13 & 14, 2017

Welcome by Slovenia Society of

Clinical Nutrition
Milena Bla Kova

President, Slovenia Society of Clinical Nutrition

 Conference Bled, Slovenia,
November 13 & 14, 2017

National Programme on Nutrition and Health Enhancing

Physical Activity 2015-2025

Mojca Gobec
Director General Ministry of Health, Slovenia
National Programme on Nutrition and Health
Enhancing Physical Activity 2015-2025

Mojca Gobec, director general, Directorate for public health

13. 14. November 2017, ONCA Bled, Slovenia
 Vision = to create an environment that
provides healthy choices

better health and quality of life

TO INCREASE
number of breast-fed children
number of those having meals regularly inc. breakfast
intake of fruit and vegetables
physical activity

TO DECREASE
overweight and obesity
undernourished and functionally less capable elderly and
patients
intake of saturated fats, sugars and salts
Intake of trans-fats
 TOGETHER WE ARE MORE SUCCESSFUL
Intersectoral Working Group

Action Plan until 2018

MoH: 2017-2019
- 20 programes
- 800.000,00 EUR per year
Nutrition in accordance with guidelines and
recommedation
Healthy food in hospitality sector
Healthy choices for social disadvantaged
Ensuring safe and healthy food from local production
Labelling and marketing
Promoting physical activity across the life span
Creating infrastructure for physical activity
Health care sector activities to promote health and
prevent CND
Education training and research
 Actions on 10 priority areas

Healthy eating in schools and kindergartens, renewed

guidelines;

Education and training;

 Increasing the supply of healthy foods in cooperation with
the food industry and catering;

Providing safe, healthy and locally produced food

Advertising to children on TV

media service providers developed codes of conduct

regarding food advertising in childrens TV programmes
Promoting physical activity
- Activities and consultations in community health
centers across Slovenia
- Acitve mobility
- Conference Healthy sport for young people

Role of health care for maintaining health/preventing

chronic diseases and obesity;
Diet and physically activity a prerequisite for healthy living and
successful treatment
Goals of the National plan and priority measures in the Action
plan 2016-2018 in the health sector

GOALS:

Empower parents-to-be / to increase the proportion of breast-fed children

Decrease the proportion of overweight and obese
Improve the oral health

MEASURES:

Update the existing prevention programs, ensuring expert support

Strengthen the multidiscilpinary approach in health education centres
Early detection and treatment of children, young people and adults with risk factors
for chronicle diseases associated with unhealthy diet, sedentary life style and
obesity.
Introducing and implementingg screening and diet counseling as integral part of
clinical care
Recent pilot activities in the health sector
Primary Health Centre
1. Upgrading the preventive programs for children,
adolescents and adults.

2.Improving care of patients, in particular of older

patients with better integration of prevention to care
for patients with chronicle diseases

Co-operation between health and educational sector and local

community
3. Implementing the program for councelling and
support for families with problems of overweight
and obesity
Introducing multidciplinary approach (dieticians, diet counsellor, clinical
dieticians) to health care and nursing care

Knowledge capacity building

SCHOOL OF CLINICAL NUTRITION

- Association for Clinical Nutrition

Introduction of systemic screening, treatment, diet counselling

integration of dietitians in the health promotion center - 25 new

centers

TESTING OF A CLINICAL NUTRITIONAL TREATMENT PATHWAY

- Institute of Oncology Ljubljana
 Improved eating habits (eating breakfast regularly, eating fruits
every day, less sugary drinks)

the declining trend of obesity among young people

VirStarc G, Kova M, Jurak G, Strel J (2016). The outcomes of the Healthy Lifestyle intervention on
children's physical fitness: A case of Slovenia.Launch Conference of the EU Strategy for the Alpine
region. Ljubljana: Sport Faculty
Thank you for your attention
 Conference Bled, Slovenia,
November 13 & 14, 2017

Integrated Nutritional Care: Extending Nutritional Care

Pathway into Primary Care

Milena Kova, chair SLOSPEN and GP at primary

health care Ljubljana
and
Antonija Poplas Susi, vice- Medical-director, Health Center
Ljuljana
Integrated nutritional care
extension of nutritional care pathway
into primary care

Milena Kova Bla, Antonija Poplas Susi

 Malnutrition (undernutrition,
overnutrition) - too often unrecognised
 Malnutrition?
Public health approach Sarcopenic obesity?

Personalized nutrition
(process of clinical
nutritional care)
Cederholm et al. ESPEN guidelines

21
 We have a problem!
CPC (UPGREATED COPMREHENSIVE PATIENT CARE- model), Community
Health Centre Ljubljana
Methods 51 graduated and community nurses were estimating nutritional risk,
using the Malnutrition Universal Screening Tool
Observation period: 8 months
Results Undernutrition risk screening

7%
20% 8%

Low
Low
17% Medium
63% Medium
85% High
High

N=1175
N=117

MUST - chronic patients MUST - all visits

 23

Nutritional care - Key priorities

1. To establish Integrated nutritional care on all levels of health system

(public personlized nutritional care)
ONCA approach

2. Educational activities (training on nutritional care in malnutrition, including

overnutrition for GPs, nurses, community nurses, medical students.. )

3. Systematic malnutrition / under- and overnutrition/ screening, assesment,

treatment and monitoring are all parts of our clinical pathway in primary care
sistem.
Screening tool MUST ( implemented as as part of pilot model in Community
Health Centre Ljubljana)
 24
Model practice - family medicine office
enables the approach to each patient!

GP

COMMUNITY GRADUATED
NURSE PATIENT NURSE

NURSE
 25

How to recognize malnutrition in general population?

GP visit
Nurse practitioner: Preventive check ups - healthy lifestyle
Active screening for risk factors and chronic non-
communicable diseases (validated tools), CVD, AH, DM2, COPD, asthma,
depression, osteoporosis, BHP)
Management of patients with managed chronic desaese
(protocols)
Community nurse
UPGRADE
ACTIVE MALNUTRITION SCREENING and CARE
( MUST tool)
 26
Introduction of clinical dietitian in primary care
system

Cooperation with GP (nutritional diagnosis)

Nutritional care procedures
Link to secondary and higher health system
levels
1. Algorithm 1 (primary level: MP, Center of health promotion (CHP))
3. Algorithm 3
2 or more treatment
(secondary,
according to MUST
tertiary level:
recommendations Directed hospitals)
evaluation a. Patients with
Patient in MP of 1 treatment by GP the need for
general according to MUST
MUST secondary
practitioner recommendations
nutritional
(GP) evaluation
0 a) stable chronic b. Hospitalized
patient with NCDs patients
b) healthy patient with CHP
risk factors for NCDs a) MUST
c) NCDs prevention evaluation Nutritional
every 12 diary, body
0 if BMI >27 with risk months in RA composition,
factors or if BMI >30 lab analysis

Treatment according to 2. Algorithm 2 (primary level,

model for obesity obesity treatment in MP)
therapy
 28

Conclusion
15% of all patients and 37% of chronic patients are malnourished
and need malnutrition consulting and treatment
There is a need for malnutrition screening and personalized
nutritional support at the primary health care level
MUST is an appropriate tool for managing adult malnutrition in a
community.
Nutritional support must be a parallel therapeutic way for patients
with acute and chronic diseases at all levels of health care
system
Nutritional preventive care - chronic
patients

29
 30

FUTURE upgrades
Implementation of clinical pathway in the relation
with other clinical pathways ( secondary and
terciary level, nursing home) on national level.
 31

Hvala (thank you) and greetings from Slovenia!

 Conference Bled, Slovenia,
November 13 & 14, 2017

Nutrition Education for Medical & Dietician Students:

Integration of LLM in Curricula

Nada Rotovnik Kozjek

Nutrition and medicine,
starting line
 What is nutriton?
American Journal of Clinical Nutrition, Vol. 77, No. 5, 1093, May 2003
2003 American Society for Clinical Nutrition

The very functions of life are completely dependent on

energy, which in turn is derived from the combustion of
foodstuffs...

improper amounts or unbalanced

combinations of nutrients
diseases, starving, death

Unbalanced intake of nutrients

(substrates for metabolism)
metabolic disorders
The ramifications of nutrition are
universal ...
Branch of biology dealing with What is nutrition?
nutrients
It is the
cornerstone of
Preventive
medicine & the
handmaiden of
Curative medicine
Multidisciplinary
the responsibility of
medical sciences every physician
Education
 ESPEN
ESPEN, LLL Pre-Graduate LLL program
 Nutritional concepts
Cederholm T, et al. ESPEN guidelines on definitions and terminology of clinical nutrition, Cin Nutr 2017

NUTRITION, NUTRITIONAL SCIENCES

all aspects of the interaction between food and nutrients, life, health and disease, and the processes
by which an organism ingests, absorbs, transports, utilizes and excretes food substances

HUMAN NUTRITION
Preventive, public health
CLINICAL NUTRITION
prevention, diagnosis and management of nutritional and
metabolic changes related to acute and chronic diseases and
conditions caused by a lack or excess of energy and nutrients.
Any nutritional measure, preventive or curative, targeting
individual patients is clinical nutrition.

NUTRITION DISORDERS
 Clinical nutrition, part of
medical education
Students
medicine, dietetics, nutritionists, nurses, physiotherapy,
kinesiology...

Professional language (terminology),

nutritional care process, all levels of health system, clinical pathway
of clinical nutrition
 School of Clinical nutrition

SLO-SPEN & Ministry of health

project

Postgraduate

Practical Clinical nutrition

knowledge, 3 Modules
(terminology, nutritional
processes)
ONCA web page-educational
possibilities
https://european-nutrition.org/
 Conclusion
Education is one of the key action in the
process of being visible
Integration at all levels of health system
We are much stronger together !
 Conference Bled, Slovenia,
November 13 & 14, 2017

ONCA Future in Slovenia

Tajda Boi
ONCA future in Slovenia
Tajda Boi, MD
WHAT ABOUT THE FUTURE???
EDUCATION!
Medical faculty

Subject clinial nutriton.

Health professionals:
School of Clinical Nutrition.
 Conference Bled, Slovenia,
November 13 & 14, 2017

The European Patient Agenda on Food and Nutrition:

Best practices and proposals for the future

Moderated by Cees Smit (EGAN) & Duan Baraga

(Slovenian patient group)
 Conference Bled, Slovenia,
November 13 & 14, 2017

Personal patient stories: My experience with parenteral

therapy
Sonja Jamnikar
MY EXPERIENCE WITH
PARENTERAL THERAPY
Sonja Jamnikar

Bled, 13th November 2017

About myself
My name is Sonja Jamnikar. I am 66 years old, retired and share a
house with my family in Velenje.
On 9th May 2008 I had my first surgery, I had a tumor on my left
ovarium. The surgery took place in the Celje Hospital and from that
time I am emtpy in my belly.
A had 6 chemotherapies at Oncology Institute in Ljubljana, I lost all
my hair, but my condition was good and had no problems at all. At
that time I was still employed but at the end of 2009 I retired.
How things started to fall apart?

In the year 2013 I had another surgery in my gastro-internal system.

It was done by dr. Erik Brecelj at OI Ljubljana.
Between the surgeries I had another cycle of 6 chemotherapies.
After second surgery I had 28 radiations.
In the year 2014 my overall physical condition dropped. I was loosing
weight, apetite and I was absolutely without any strength.
My oncologist, mag. Miran Bakovi sent me in Nutrition ambulance
at OI Ljubljana and my results were rather catastrophic.
The situation was URGENT.

I was unable to stand on my feet, could not think about walking, I was
unable to turn myself in the bed, but my minds were still clear. The diagnosis
was Gastrointestinal dysfunction.
The doctors with dr. Nada Rotovnik Kozjek in charge started with so called
Parenteral Therapies and my body reacted soon and good.
The fight began.
Step by step, I was more vital. I cannot forget the day when I rose in my bed
with nurses help. Then I slowly started using my legs.
In between the nurses started with the education how to prepare therapies
by myself, because I will be dependent of them for all my live.
In the middle of January 2015 I went home. I had everything ready for the
therapies.
When I improved

At first I had the medical checks every week at OI, later the interval
changed to once a month.
The vein valves are replaced once per week at closest Hospital
Topolica.
When laboratory results are below required values, I have to stay for
a few days at OI.
How did I react to parenteral therapy?

I accepted the therapy at once. It was shook for me, be it was the only way
how to survive.
I have re-done my priorities as well.
I would like to live my normal life.
Every evening I prepare my therapy - food for over the night, at the morning
I am free.
I drive my car.
I am member of the group learning Spanish language.
I am member of the artist group.
I enjoy my hand crafts and reading books.
How can I do it?

I have always time to be with my friends for a little talk and coffee.
My biggest wish is still traveling and going to cruises with my friend.
I have my dear family, especially my son Sergej and friends.
Dr. Nada Rotovnik Kozjek and her team are taking care of me all the time.
A have a big wish to live, I am the fighter.
I eat also some normal food.
I have some restrictions, but they seem minor as I have a lot of hope for my
future.
For my next birthday I already booked a cruse, this will be next year in May.
Always active

And one thing not to forget to tell you all the backgrounds are from
my last years occupation - I coloured the mandalas for Christmas
cards and gifts.
At the last slide, there is symbol of myself happy girl with flowers,
birds and butterflies in her hair.
Thank you for your attention and that I had an opportunity to share my
experience with you.
 Conference Bled, Slovenia,
November 13 & 14, 2017

Personal patient stories: Integrated rehabilitation of

patients with blood cancers together towards health

Brina Zagar, Kristina Modic,

Slovenian Lymphoma and Lekuemia Patient Organisation,
L&L
The Comprehensive Rehabilitation of
Patients with Blood Cancer
Kristina Modic & Brina agar
Slovenian Lymphoma and Lekuemia Patient
Organisation, L&L
 THE PROJECTS STARTING POINTS
A significant need for the comprehensive
rehabilitation of patients with blood cancer during
the time of treatment and for 6 months afterwards.
The patients poor accessibility to comprehensive
and organized rehabilitation.
The significant need of patients for physical,
nutrition, and psychological counselling.
Opportunity: in May, the Republic of Slovenias
Ministry of Health published a public tender for the
period from 2017 - 31 Oct. 2019.
 THE MEANING OF THE PROGAMME FOR
PATIENTS
The systematically organized comprehensive
rehabilitation of haemato-oncological patients
prevents or successfully eliminates additional
problems caused by aggressive treatment,
significantly increases the patients quality of life
during and after treatment, as well as aids them in
successfully returning to their social and working
environment.
 THE GOALS OF THE PROGRAMME
The empowerment of patients and their relatives.
The increased quality of patients life.
Better outcome of the treatment.
Quicker recovery.
Easier return to the social and working
environment.
The empowerment of experts and volunteers
collaborating in the programme.
 WHICH PATIENTS CAN ENTER THE
PROGRAMME?
Patients diagnosed with specific types of blood
cancer, who are being actively treated at the
Department of Haematology of the Ljubljana
University Medical Centre.
Patients with AML, CML and Multiple Myeloma
who are in the process of active treatment and
patients whose treatment ended up to 6 months
ago.
Patients after allogenic and outologous stem cell
transplantation.
 PROGRAMME PROVIDER
Programme holder: Slovenian Lymphoma and Leukaemia
Patient Association, L&L
Programme partner: Slovenian Haematological Society
Direct programme providers:
Haematologists,
nurses,
physical therapists and kinesiologists,
clinical dietitians,
psychologists,
social workers,
layman advisors from the L&L Association.
 THE CONTENT OF THE PROGRAMME
The programme consists of 3 key modules and various
forms of counselling:
PHYSICAL MODULE: Regular exercise led by physical
therapists and kinesiologists once a week.
NUTRITION MODULE: Assessment of the nutritional
state of an individual, creating a nutrition plan and
adjusting it regularly.
PSYCHO-SOCIAL MODULE: Assessment of the psycho-
social state (tests and conversations) and attendance at
support group once a month.
 THE CONTENT OF THE PROGRAMME
Other forms of counselling:
GROUP COUNSELLING WITH EXPERTS FROM ALL
THREE MODULES: regular counselling with experts
who give advice on nutrition, exercise, psycho-social
state and handling problems that arise from the
treatment or recovery.
INDIVIDUAL EXPERT COUNSELLING: personal
counselling with experts who are part of all 3
modules: haematologists, clinical dietitians, physical
therapists, kinesiologists, psychologists...
LAYMEN COUNSELLING: counselling from the L&L
Association representatives in our offices, on the
field, or by phone, e-mail.
PATIENTS ENTRY INTO THE PROGRAMME
A patient can enter the programme at the beginning of the
treatment, during the treatment, or after finishing the active
treatment.
How to enter:
The patient is invited by the treating haematologist or by an L&L
Association representative.
The patient needs to meet the requirements to enter (type of
disease, type of treatment).
The patient undergoes an initial assessment of:
medical condition,
nutritional state,
physical state and physical abilities,
psycho-social state and quality of life assessment.
 NUTRITION MODULE
Clinical dietitian follows the following steps:
Asses the patients nutritional state, based on body
composition analysis and nutritional medical history.
Conducts an extensive conversation with the patient
about their eating habits, limitations and needs.
An individual nutrition plan is created for the
patient, based on measurements and conversation.
Patient tracking:
Patients are assessed 3 or 6 months after entering
the programme by a clinical dietitian who compares
the results and adapts the meal plan accordingly.
 NUTRITION MODULE
Individual approach is extremely important.
Patients have a lot of nutritional problems and questions
due to:
Neutropenia, nausea, vomiting, loss of weight, loss of
appetite, stress and anxiety
Patients are very motivated for all 3 modules and
participation in the programme:
They attand to all the activities regularly.
They strictly follow reccomendations.
They write diet diary.
 CONCLUSIONS
CR for patients with blood cancers is extremly
needed and has a great value to treatment outcome
and patients quality of life.
CR is currently available only for limited number of
patients with specific blood cancer types under the
pilot program.
We expect that the results of the pilot program will
demonstrate the importance of rehabilitation for
treatment outcome and quality of patient's life and
quicker return to work environment.
 CONCLUSIONS
When the pilot programme finished, we will strive for
availability of the program for all patients with blood cancer
and finally for all patients with cancer.
 Conference Bled, Slovenia,
November 13 & 14, 2017

Personal patient stories: ONCA for breast cancer

patients, Europa Donna experiences

Mojca Senar, Tanja panic,

Europa Donna Slovenia
Optimal Nutritional Care for All
Unmet Needs of Breast
Cancer patients

Bled, 13. 11. 2017

Tanja pani, PhD, DVM
Europa Donna Slovenia, president
Europa Donna The European
Breast Cancer Coalition
1994 Milano (Veronesi, Costa, Freilich)
Europa Donna Slovenija
1997

3500
1300

6600
Patients
Awareness
Survivors

Decision
Experts
makers
Breast cancer patients
More than 1200 new / year
Therapies:
Chemotherapy
Anti-hormonal
Biologic treatments, radiation
Few nutritional counseling and
analysis
More at metastatic disease
Breast cancer patients
The role of BC patient organization
Awareness Optional Nutritional Care for All
Monitoring nutrition
Measure total body composition (bone, fat,
muscle)
Education:
Printed media
On line
Lectures
Thank you for your attention
 Conference Bled, Slovenia,
November 13 & 14, 2017

Outcomes of the EPF/EGAN/ENHA meeting, June 29,

2017 in Brussels

Gaston Remmers
 A European Patient Agenda
on Food and Nutrition

Dr. Gaston Remmers

ENHA / ONCA Annual Conference

Bled, 13-14 November 2017
 How it all started
Memorandum of Understanding 2012
EPF EGAN - ENHA
Conferences in Brussels (2012) and in Dublin (2013) to define
and start implementing an European patient agenda

Publication Patient Perspectives on Nutrition, 2013

Partner in the Optimal Nutritional Care for All campaign

conferences in Brussels (2014), Berlin (2015) and Madrid
(2016) with also a plenary patient session

A European patient nutrition brainstorm conference, June 29,

2017 in Brussels
 EU Patient Groups June 29, 2017
Brussels brainstorm conference with 30 participants from a wide
range of European, disease specific patient groups

They see the urgency of the issue

Also in relation to prevention

(instead of curing life-style diseases)

Outcome: recommendations for all stakeholders

& a renewed patient agenda on nutrition 2018 2021

Report in Conference Package!

 4 questions, Worldcaf method
a.Unresolved challenges regarding nutrition and
prevention with regard to your disease?
b.Unresolved challenges regarding nutrition and
prevention in general?
c. In what way could the patients voice on nutrition and
prevention become more influential in health?
d.What should we do to have an update of the EU Patient
Agenda ready by April 2018?
 European Patient Forum
Conference, June 29

Marco Greco, EPF chair

Nutrition, nutritional care and
the collaboration with ONCA
are one of EPFs key priorities
for the upcoming years
 Three types of patient groups
Those depending on medical nutrition day and night

Those for whom nutrition plays a key role in the

management of the disease and health outcome
(kidney, cancer, coeliac, liver)

Those who need nutrition for prevention (spina

bifida, first 1.000 days)
 Key recommendations
1. Strengthen European Patient collaboration on Food
and Nutrition
2. EU-wide Education and Dissemination of existing
information and materials
3. Food Safety and Labelling
4. Enhance Innovative Scientific Research Practices that
support Patients drive for Self-Care
5. Focus on Prevention throughout the life-cycle
6. Develop a health promoting and healthy food
environment
7. Strengthen collaboration between key stakeholders:
patients/citizens, agrofood & health care system
 1. Strengthen European Patient collaboration
on Food and Nutrition

1. Organize an appropriate network for EU Patient Groups

to work on Food and Nutrition
2. Create National Platforms of patient groups around
food/nutrition
3. Develop a Patient ONCA dashboard
4. Involve also healthy citizens in the collaboration
5. Develop a strategic and actionable agenda
 2. EU-wide Education and Dissemination of existing
information and materials

1. Differentiated according to target group:

Patients/Citizens and caregivers:
Medical Professionals
Healthy citizens
2. Guideline development with ESPEN, EFAD; generate
lay-versions of guidelines and care standards (like the
PINNT UK experience with BAPEN)
3. Patient Best Practices on new ONCA website
4. General remark: avoid duplicating work
 3.Food Safety and Labelling

1. Safety: increase involvement of

patients/citizens with the food and
nutrition regulatory environment
2. Improve quality of labelling:
Readability of labels for specific
diseases.
Accuracy regarding the completeness
of all ingredients
 4. Enhance Innovative Scientific Research Practices that
support Patients drive for Self-Care

1. Prioritise the personalisation of food approaches over the

undiscriminated application of generic general public food
pyramids
2. Devise strategies to upgrade valuable individual experiences
with food and nutrition to a) disease-specific or subgroup specific
knowledge and to b) Evidence Based Practice/Medicine
3. Develop Citizen Science approaches that uncover contextualized
and highly fitting food and nutritional approaches (see e.g.
www.BeyondRCT.net)
4. Develop new approaches to Data-stewardship that place citizens
in the control, guarantee their privacy, and stimulate research (see
e.g. www.midata.coop, My Data Our Health Netherlands)
5. Focus on innovative research areas (e.g. gut microbiota, body-
mind interactions, low-grade inflammatory processes and the
immune system, etcetera)
 5. Focus on Prevention throughout the life-cycle

We are all pre-patients

1. Personalised life-cycle approach, insisting on the value
of eating well throughout all life cycles
2. Smoke free first generation, with adequate lifestyles
(1-20 years)
3. Focus on adults programming: awareness raising on
through good food practices, focus on first 1000 days,
relevance of mother-milk
4. Improve and introduce early diagnostic methods
(including DNA-testing at birth)
 6. Develop a health promoting and healthy food
environment
1. Salutogenic environment: make the easy and tasty
choice the healthy choice (incl financial incentives)
2. Insistence on the use of unprocessed and fresh foods
over processed foods
3. Better quality of (fresh) food products in shops and
stores, in institutional care environments
4. More creativity in care environments to face limited
food budgets in institutional care settings
5. Personalised food approaches
6. Develop proper support for caregivers of patients
7. Showcase global socio-economic gains through
health food regimes
7. Strengthen collaboration between key stakeholders:
patients/citizens, agrofood & health care system

1. Develop collaborative processes between

agrofood sector, the health care sector and
among patients and citizens.
2. Aim at accelerating the learning curves of all
involved
3. Develop appealing projects that showcase a
win-win-win
 ENHA-ONCA and patient involvement
PAST (pre-ONCA)
Patients on the back seat
Patients as observers in health /nutrition research, providers
of feedback on proposals of experts

PRESENT (ONCA)
patients on the front seat
Patients invited to explicitly highlight their best practices as
part of a communication strategy, to sensitize and incite
health professionals to take patients serious

FUTURE (NEW ONCA?)

Patients on the driver seat
Patients initiate, drive and execute nutrition research
(together with research professionals), including explicitly
citizen science.
 Patient Dashboard
Goal:
Enable patients and organisation in EU-
countries to quickly grasp the country-specific
situation regarding the articulation and
achievement of the patient agenda on food and
nutrition
 Patient Dashboard: possible items
1. Is there an integrating platform active that transcends specific
diseases (like Platform Patients and Food NL)?
2. Does this organisation have a policy and strategy agenda?
3. Availability of a communication strategy?
4. Are patients member of ONCA-country networks/delegations?
5. Is there a good balance between attention for prevention and
cure?
6. Is there a good balance between attention for medical food
and fresh food?
7. Is research taking place on patient experience with food and
lifestyle (Citizen Sience)?
8. Is there attention for the socio-economic environment of
patients related to food?
9. etcetera
 Key recommendations and leads
1. Strengthen European Patient EPF
collaboration
2. EU-wide Education and Dissemination ?
3. Food Safety and Labelling ?
4. Enhance Innovative Scientific Research My Data Our
Practices Health NL
5. Focus on Prevention throughout the
life-cycle ?
6. Develop a health promoting and
healthy food environment ?
7. Strengthen collaboration between key
stakeholders ENHA-ONCA
 Conference Bled, Slovenia,
November 13 & 14, 2017

European Patient Forums new nutrition agenda

Cees Smit, EGAN

 FROM BARE NECESSITY TO AN
ESSENTIAL COMPONENT OF HEALTH
MANAGEMENT NUTRITION AS A
TOP PRIORITY FOR EU PATIENT
GROUPS
Cees Smit, on behalf of EPF
info@smitvisch.nl

13/11/17
ONCA Conference, Bled, Slovenia @eupatientsforum
About EPF

European Patients Forum

- Independent & non-governmental
- Umbrella organisation
- Active since 2003
- EU patients voice

Our members
- 74 patients groups
- EU disease specific organisations &
National patient coalitions
Mission and vision

Our Vision!
All patients in the EU have equitable
access to high quality, patient-
centred health and social care.

Our Mission!
To ensure that the patient
community drives health policies
and programmes that affect them.
Madrid conference 2016: Key role EPF Parent
testimony
Madrid conference 2016: Key role EPF Patient
testimony
 European Patient Forum Conference, June 29

Nutrition, nutritional care and the

collaboration with ONCA are one of
EPFs key priorities for the upcoming
years Marco Greco, EPF President
A renewed EU patient agenda

Focus points

1. Report and recommendations of the EU Patient Group Conference on Nutrition

2. Guideline Development/lay-versions together with ESPEN, MNI, EFAD, EUGMS

3. Educational Material (Patient Stories, etc.) together with ENHA, EFAD

(Dieticians), MNI/MNI-companies

4. Scientific/Practice Based Evidence, Citizen Science, HTA, together with

MNI/ESPEN, My Data Our Health (MD|OG), Univ Vienna

5. Code of Conduct EPF/MNI (Cross-industry meeting December 5 in Brussels)

6. Potential areas of cooperation still to be defined

Clouds on the Horizon

White Paper EU from Juncker Reflections and

scenarios for the EU27 by 2025 , March 1, 2017
Five future scenarios for the EU ( more or less EU)
Health in all policies scenario ( DG Sant)
Decommissioning of health care (was already a
responsibility of the EU MS)
Letter of concern by EU Patient & Consumer Groups
(a.o.: EPF, EPHA, EAHP), June 6, 2017
Call for robust and ambitious EU Health
Programme!
EPF Position Statement on Information to patients
on food and nutrition

Key dimensions
Patients using food and nutrition:
1. for prevention and improved disease management,
2. key role in the management of the condition and health outcome
3. for those entirely dependent on medical nutrition, day and night
EU legislation in the area of food and nutrition, safety, labelling,
parenteral nutrition
Role of patient organisations
Information and awareness
Reimbursement and Access
Research
Link to recommendations made by EU patient groups in June 2017
Next steps: the forthcoming statement is currently being developed and will
shortly undergo an EPF Membership consultation before being published
THANK YOU

www.eu-patient.eu
 Conference Bled, Slovenia,
November 13 & 14, 2017

Implementation of nutrition curriculum in Medical Faculty

of Ljubljana
Duan uput,
former Dean of Medical Faculty, Ljubljana
 Conference Bled, Slovenia,
November 13 & 14, 2017

From Farm to Fork: How locally produced food can be

more sustainable and meet nutritional needs of the
vulnerable
Igor Soltes,
Member of the European Parliament
Conference Bled, Slovenia,
November 13 & 14, 2017

Lunch!
13:15 14:15
 Conference Bled, Slovenia,
November 13 & 14, 2017

Increase the Impact of ONCA

 Conference Bled, Slovenia,
November 13 & 14, 2017

The role of the European pharmacists in ONCA

Josep Antoni Tur Mari, Pharmaceutical Group of the

European Union (PGEU)
 Conference Bled, Slovenia, November 13, 2017

The role of the European pharmacists in ONCA

Josep A. Tur, PhD

nucox@uib.es
 The Pharmacist:
the closest health advice
( 22.000 pharmacies; 1/2000 hab;
2.2 M hab/d; 182 M advices/yr)

A way to rationalize drug

consumption
1.6 13.0
Ratio (%) drug Mean
1.4 10.0 price
consumption/GDP
7.0 of drugs
The Pharmacist in Spain
(CONGRAL, 2016)
1.2
4.0
()

as a health agent 1.0

2001
2003
2005
2007
2009
2011
2013
2015
The nutritional advice is part
of pharmaceutical advice
WGs Food & Nutrition Administration

Dermopharmacy Analytical Chem.

Research Distribution
& Teaching

Comm. Pharmacy Industry

Optics
Orthopedics & Audiometrics Hosp. Pharmacy
 Food & Nutrition WG
15% of Spanish pharmacists (n=10,500)

Training in Nutrition & Dietetics (double degree)

Long-life learning in Nutrition & Dietetics
(biannual meetings of the WG, since 2000)
(10-12 meetings on particular subjects / year
in all Spanish regional colleges)
Research in community nutrition
Intervention by nutritional education

The PLENUFAR surveys

 The PLENUFAR surveys
(PLan de Educacin NUtricional por el FARmacutico)
-Plan of Nutritional Education by the Pharmacist-
1992-2017

To assess nutritional habits and deficiencies of the population

Aims To raise awareness on the importance of nutrition for health
To promote healthy eating & lifestyle habits
 The PLENUFAR surveys
(PLan de Educacin NUtricional por el FARmacutico)
-Plan of Nutritional Education by the Pharmacist-
1992-2017

Design of survey
and educational
Food & Nutrition WG materials
Shipping to Spanish pharmacies

Method
Presentation Food & Nutrition WG 1. Survey pre-activity
of results 2. Educational nutrition
Assessment
3. Survey post-activity
of obtained data
Materials
 2,000 pharmacists; 100,000 housewives

Educational activities on: Main results:

1. Food and nutrients 1. Increased consumption of
2. Nutrition & Health vegetables, salads, fruits,
3. Protein foods fish & pulses
4. Fats & oils 2. Decreased consumption of
5. Carbohydrates, vitamins & minerals sausages, eggs, sweets and
6. Recommended intakes cakes & alcoholic drinks
PLENUFAR I
1992
3,000 pharmacists; 120,000 children (10-14 y.o.)

Educational activities on: Main results:

1. Food and nutrients 1. Increased consumption of
2. Nutrition & Health vegetables, fruits, fish, milk,
3. Protein foods: The fish bread & pulses
4. Fats, carbohydrates, vits. & mins. 2. Decreased consumption of
PLENUFAR II 5. Recommended intakes sweets, bakery & soft drinks
2000 6. The breakfast: how important it is 3. Increased daily breakfast
 3,500 pharmacists; 26,000 elderly people (65 y.o.)
3.8% malnutrition & 22.1% risk malnutr. (MNA) Drinking habit (glasses/d)
All Men Women

PLENUFAR III
2005
2,800 pharmacists; 13,800 pregnant and lactating women

Educational activities on: Main results:

1. Nutrition & Healthy Pre-pregnancy 1. Increased consumption of
2. Nutrition & Healthy Pregnancy vegetables, salads, fruits &
3. Nutrition & Healthy Lactation nuts
4. Foods, Nutrients & Hydration 2. Decreased consumption of
PLENUFAR IV 5. Avoiding tobacco & drinking habits sausages & alcoholic drinks
6. Recommended intakes (supplements) 3. Decreased tobacco
2010
 2,500 pharmacists; 9,500 postmenopausal women
Educational activities on: Main results:
1. Climacteric physiopathology 1.Menopause: around 49 y.o.
2. Nutrition in climacteric 2.Overweight & Obesity: 48.3%
3. Nutrition in menopause 3.Tobacco: 21%
4. Foods & Nutrients 4.Supplements: 52% (Ca+Vit.D: 30%)
5. Hydration in menopause 5.Increased Mediterranean diet: 2/3
PLENUFAR V 6. Recommended intakes (supplements) 6.Increased quality of life: 16%
2013

4,500 pharmacists; 11,400 active people

Educational activities on: Main results:

1. The benefits of physical activity Ergogenics: 50% (: isotonic drinks &
2. Nutrition in physical activity energy bars:; : caffeine & polivits)
3. Foods & Nutrients
4. Hydration in physical activity
5. Planning healthy diets in Phys. Act.

DIET
PLENUFAR VI

P.A.
6. Recommended intakes (supplements)
2017
(40.13,40.9] (7.8,8.81]
[39.52,40.13]
(6.95,7.8]
[5.01,6.95]
 CONCLUSIONS

1. The pharmacist is an active agent of

optimal nutritional care for all; he/she is
able to assess and improve the nutritional
status of a population.
2. The pharmacist must be optimally and
continuously trained in Nutrition &
Dietetics.
3. The pharmacist must be as close as
possible to the population.
 Conference Bled, Slovenia,
November 13 & 14, 2017

Breakout sessions
1. Prevalence and cost benefit of nutritional care in the
community: research project design, methodology, pilot
sites
Jupiter Suite

2. Education and joint collaboration on guideline

development and patient versions of guidelines
Flora Floor 3, right of elevator
 Conference Bled, Slovenia,
November 13 & 14, 2017

Breakout Session Reports and Plenary Discussion

 Conference Bled, Slovenia,
November 13 & 14, 2017

Bringing good nutritional care into the public arena

 Conference Bled, Slovenia,
November 13 & 14, 2017

Communications strategy, current status and plans 2018

Joost Wesseling,
ENHA Communications Specialist
 KEYNOTE

Communications
strategy; Current status &
plans 2018

Bled, Slovenia
13 November 2017
May 2017, Prague

Diffuse message (abbreviations)

No permanent stage
Distance & connectivity
Limited resources
 Focus on ONCA (ENHA coordinates, countries facilitate)
A single, clear and strong positioning
Engage members (inspire, connect, support)
Scalable: Low touch, easy operation.
Member/ Member/
Country Country
Member/ Member/
Country Country
european-nutrition.org/download-centre
The Optimal Nutritional Care for All campaign is powered by ENHA and aims to support nutritional
care initiatives at a national level.
Recently the state-of-the-art online platform was launched, fully optimised for mobile usage.
The platform contains dozens of Good Practices from all over Europe on screening, education and
awareness, delivering proof of concept of the campaigns effectiveness.
With two clicks you can share a Good Practice within your professional network and via social media
but also via email or Whatsapp. The Good Practices are also used for emailing campaigns.
 european-nutrition.org

Good Downloads Country information Conference reports

Practices

Go have a look: Find your Good Practice, Share it to your networks and Boost the campaigns reach!
european-nutrition.org/download-centre
 28 Good Practices published

Lets get to a cool 100 as soon as possible!

350 Good Practice shares!
www.european-nutrition.org
www.european-nutrition.org
 THANK YOU

YOURE AWESOME!
 Phase II:
Marketing activities
Quarterly Digest
(October 9th)
6 Good Practices
Ongoing activities
interconnecting the countries
creating an umbrella brand including
communication materials
providing a broad platform (conference,
meetings, online) to share good practices
monitoring progress via dashboards
Planned collaborative activities
Growing emailing list
Adding social media channels
Enhancing Scorecard
Hotline with comm contact
Create comm materials
Ideas
Undertaking PR activities
Identifying personas of influencers
& decisionmakers
Involve students; stimulate utilisation of
good practices in learning programmes for
medical, paramedical and nutrition students
 What additional activities
can the ONCA base team undertake
to support member countries best?
 Conference Bled, Slovenia,
November 13 & 14, 2017

How to Make Media and Stakeholders Aware

Chaired by Botjan Tadel, PR professional, Ministry of
Cultural Affairs, Slovenia

Joost Wesseling, ONCA Communications

Marcel Smeets, Care with Stars
Darija Vranei, Croatia
Marek Lichotka, Appetite for Life, EGAN/EPF
Mojca Lavreni, Journalist, patient, Slovenia
 How to make media and stakeholders aware
Marek Lichota

ONCA Conference Bled, Slovenia,

November 13 & 14, 2017
 WHO CAN EAT
WHILE HE SLEEPS ?
MAREK LICHOTA
AGE: 37
CITY: CRACOW
 MAREK LICHOTA
AGE: 37
CITY: CRACOW

DIAGNOSIS:
- CROHNS DISEASE,
- SHORT BOWEL SYNDROME
- HOME PARENTERAL
NUTRITION
 SUPPORT INSPIRATION

SINCE 2012
THE ASSOCIATION APPETITE FOR LIFE
HAS BEEN WORKING TOWARS
IMPROVING
QUALITY OF LIFE OF THOSE,
WHO HAVE TO EAT IN A DIFFERENT
WAY TO SUSTAIN LIFE FUNCTIONS,

THROUGH: INTEGRATION EDUCATION

 CAN WE ESTABLISH A DIALOGUE
OR JUST SENDING MESSAGES ?

SENDER RECEIVER
 HOW WE CAN GAIN
PROPER UNDERSTANING ?
WHAT IS OUR GOAL ?
WHAT WE WANT TO ACHEIVE ?
MAX. ONE OR TWO ASSUMPTIONS.
IT WILL GIVE MORE SENCE TO OUR
WHO WE WANT ACTIONS, AND HELP TO AVOID MISTAKES.
TO REACH ? TO MANY INFORMATIONS WILL
NAMING THE RECEIVER DECREASE CLARITY.
WILL DEFINE WHAT WE
ARE GOING TO SAY AND ARE WE ATTRACTIVE
HOW WE WILL DO THIS WITH OUR
COMMUNICATION
INFORMATION SHOULD BE
DISTRIBUTED IN AN
ATTRACTIVE WAY. EASY TO
UNDERSTAND AND
INTERESTING IT SHOULD
MOTIVATE TO LOOK
DEEPER INTO THE TOPIC.
 WHO
WE WANT TO REACH ?

MASS MEDIA OTHER STAKEHOLDERS

Primary stakeholders: Beneficiaries or targets of the effort.
GENERAL MEDIA (NEWS) Secondary stakeholders: Those directly involved with or
LIFESTYLE MEDIA responsible for beneficiaries or targets of the effort.
SPECIALIZED MEDIA
(MEDICAL TV CHANNELS, Key stakeholders:
JOURNALS, PORTALS i.e.) - Government officials and policy makers.
- Those who can influence others.
- Those with an interest in the outcome of an effort.
 WHAT
IS OUR GOAL ?

SOLUTION
IDENTIFY
PROBLEM

PROBLEM & PLACE PROVIDE

DEFINE STAKEHOLDERS THE PROBLEM SUSTAIN
STAKEHOLDERS
NEEDS AT THE OPEN STAKEHOLDER
WITH THE
ANALYZE PUBLIC FORUM INVOLVEMENT
SOLUTION
IMPORTNACE
 ARE WE ATTRACTIVE
WITH OUR COMMUNICATION ?

SENSATIONAL REPORTING (REVOLUTIONARY

CANCER DRUG testing in mice)

SHARE HUMAN STORY (BASED ON THIS WE CAN

SOLVE HEALTH PROBLEM, ITS CATCHY)

ATTRACTIVE PRESENTATION (CONTENT AND

FORM WILL REACH MORE PEOPLE)

MASS MEDIA ARE NOT MEDICAL JOURNALS

(SIMPLIFY THE MESSAGE
APPETITE FOR MEDIA
& STAKEHOLDERS
 APPETITE
GOALS

INCREASE ACCESS TO MOBILE INFUSION DEVICES

Insufficient funds dedicated to HPN program impacts Patients Quality of Life
and Care.

ENABLE ACCESS TO NEW TREATMENT OPTIONS

Less side-effects and lower dependance on PN will improve Quality of Life
for some of Patients.

COORDINATED CARE ON IF PATIENTS

Intestinal Failure as a complex and chronic medical condition
should managed by MDT, supported by other medical professionals
under structured network of IF specialized centers and services.
 ARE WE ATTRACTIVE
WITH OUR COMMUNICATION ?

DZIENNIK POLSKI
WIADOMOCI
NEWSPAPER
TVP1 MAIN NEWS

THEY CANNOT EAT BUT STILL

ACCESS TO BIOLOGICAL
HAVE APPETITE FOR LIFE .
THERAPIES IN IBD AS CHANCE
IV NOT FOR 2 BUT FOR 20
FOR NORMAL LIFE.
HOURS.

CZAS NIEZWYKY EKSPRES REPORTERW

PR TRJKA POLISH RADIO TVP2 PUBLIC POLISH TV

HUMAN STORIES WITH STORY OF RELATIONSHIP

MEDICAL PROFESSIONAL BETWEEN MAGDA AND
COMMENT. DISABILITY STEFUN (BACKPACK).
WHICH YOU CANNOT SEE. PN BAG AS WIENER-
SCHNITZEL.
 WHAT ABOUT
OTHER STAKEHOLDERS ?

MEETING IN
ZAPALENI DO NGO
POLISH PARLIAMENT GRANT COMPETITION

MEMBERS OF PARLIAMENTs,
PHARMA INDUSTRY
PHYSICIANS,
NGO
OTHER NGOs
PUBLIC ADMINISTRATION
POLICY MAKERS

PATIENT MEETING 2017

MINISTRY OF HEALTH

DIRECTORS OF DEPARTMENTS
IN MINISTRY OF HEALTH
DONT GIVE UP ! KEEP TRYING

THANK YOU !
 How to make media and
stakeholders aware?
Asst. Prof. Darija Vranei Bender
Croatian Society of Clinical Nutrition Croatian Medical Association
University Hospital Zagreb
Target audience

Media (offline & online)

Healthcare professionals
Patients
General public
Students & Academia
Authorities
B2B (Medical industry)
Communication Goals

To build awareness and

excellence
To improve the practice and
availability of nutrition
support
To achieve two-way
communication in target
audience
To generate positive media
coverage
Communication channels

Live events (Congresses, Conferences, LLL

modules, Events, Courses)
Media print, TV, radio and online
(websites, blog)
Online media: websites, direct mailing
through newsletters
Social media:
Facebook general public, patient groups
Instagram general public
Linkedin B2B
How to increase visibility and awareness?

Do it yourself
Viral video Youtube
Blogs
Advertorials stories about real
people and cases
Articles (special consideration to
titles & context)
#
Dare to be different
The power of Facebook // Case study: How to
decrease arsenic in rice
 EURHECA
DRIVE THE APPETITE OF YOUR RESIDENTS TO THE MAX

EUROPEAN RESTAURANT AND HOSPITALITY

IN ELDERLY CARE AWARD (EURHECA)

Marcel Smeets, Bled, 13 November 2017

A joint initiative of three EU associations

EDE EAHSA ENHA

To promote good To promote To combat
management better services under-nutrition
and skills via (and delivery) for and to promote
best- practices older people well-nutrition

EURHECA
Drive the appetite of your residents to the max
A Michelin guide for elderly care facilities

Whos doing well, and how could you

do better?

Focus on hospitality

Understand your residents

preferences

Learn and improve

Raise appetite and well-being by

well-eating

Based on existing practices in EU

EURHECA
Drive the appetite of your residents to the max
What do you (think they) prefer?
A B

D C

EURHECA
Drive the appetite of your residents to the max
 1. 2.
360 degrees External audit
internal on Hospitality
evaluation of policies,
hospitality on- Accomodation &
the-spot, by facilities,
online customer
questionnaire friendliness,
treatment, Food
& beverages,
ambiance

3.
Face-to-face
interviews with
4. management,
EU event and professionals
announcement and residents
of Award on the basis of
winners questionnaire
 Management
reporting

Overview of scores

Differentiation of
scores

Insight in
weaknesses and
strengths

Suggestions for
improvement

EURHECA
Drive the appetite of your residents to the max
How we will roll-out

SEP-DEC 2017 JAN 2018 2018

Pilot, recruitment Evaluation, Fine Business case,
20 sites, 4-6 tuning, Workshop Recruitment,
countries in Brussels Event

EURHECA
Drive the appetite of your residents to the max
 Conference Bled, Slovenia,
November 13 & 14, 2017

Group Photo!

Then meeting in the lobby at 19:15 for a short walk to dinner

 Conference Bled, Slovenia,
November 13 & 14, 2017

European Innovation Active & Health Ageing

Anne de Looy & Olle Ljungqvist

Conference Co-chairs
 Conference Bled, Slovenia,
November 13 & 14, 2017

Update from the EIP Active and Healthy Ageing A3

Nutrition Group
Regina Roller-Wirnsberger, co-chair EIP AHA Nutrition
Group
 Update from the
EIP Active and
Healthy Ageing A3
Nutrition Group

Regina Roller - Wirnsberger

Medical University of Graz/ Austria

High User Profile
 The EIP on Active and
Healthy Ageing Approach

+2 Healthy Life Years by 2020 - Launched 2012 as part of

Triple win for Europe Europe 2020 Strategy.

- A stakeholder-led, cross
Sustainable sectorial, collaboration
Health &
& Efficient Growth & initiative for research,
Quality of
Care Expansion innovation & intervention.
Life of Systems
( of EU
European - Reach a critical mass for
Industry
Citizens action by pooling EU
resources/ expertise &
recognising innovation /
SIX AREAS OF INTERVENTION excellence.
A1. Adherence to treatment
A2. Preventing falls TWO STREAMS FOR ACTION
A3. Frailty & cognitive decline
B3. Integrated care Action Reference
C2. Independent Living Groups Sites
D4. Age-friendly environments
 To make an impact on new paradigm of
ageing at EU level we need

32
Reference Sites Learn from
experience
6 Action
Operate in
Groups
real world

identify & scale-up

Support best solutions
Strategic vision
research
Political support
New knowledge for innovative Influence policy
at EU level
interventions & inform policies
Adapt
Regulatory
Alignment of Framework Allocate
EC funding conditions resources
efficiently
Advocacy &
visibility
A3 Action Plan Headline objective
Develop and implement sustainable
multimodal interventions for the prevention
and comprehensive management of
functional decline and frailty
 Status Quo

A3 Action Areas: Thematic focus

Food and Nutrition
Physical Activity
Frailty in general
Cognitive decline
(Caregivers)
 Synergies

Impact of Community-based
Programs on Prevention and
Mitigation of Frailty (ICP-PMF):
update of the A3 - A1 - B3 Action
Groups Synergy.
 Matrix of A3 Collaborative Work Pillars
and of the General Objectives

Screening,
Monitoring Care and Research
Prevention and
and Early Cure
Diagnosis Education

A Harmonization of Data

B Identification, implementation and scale-up of A3 Good Practices

C Models of care for integrated management: education and advocacy

D Identify and implement Enabling Knowledge and Technologies

E Dissemination and active involvement of the stakeholders across AGs and with RS

F Synergies to other Action Groups and Reference Sites

G
 Prevention

General Objective: Identify and Scale-up good practices

tackling malnutrition across settings in different EU
countries.
Progress: Validation and implementation of screening
tools, Pathways for interventions Interventions, Training
models, Screening programs for malnutrition are being
deployed, ~10,000 site visits per month.
Defined SPRINTS: Graz malnutrition tool for assessment of
malnutrition in hospital settings, Training nurses for
malnutrition, Dietary games & I-prognosis Tools, Food
safety comprehensive management.
Research and Education

Objectives: Models of care for integrated management: education

and advocacy, Dissemination and active involvement of the
stakeholders across AGs and with RS.

Progress: to be defined following this conference.

Defined SPRINTS: Report of the 3rd Optimal Nutritional Care for

All Conference 2016, Madrid conference 2016: key role EPF
Parent testimony, Workshop, May 19, Prague, 2017,
Implementation conference , November 13 & 14, Bled, Slovenia,
2017 , Press Release_ONCA Prague_19052017, Dissemination
and health promotion campaigns.
 Innovation Cycle / European Innovation Partnership

Generate Questions
from real life data

Basic Science Applied Science

Generate Impact for
political stakeholders

Implemention
Evaluation
Scaling - Up
 Areas for Collaborative Work

Physical Activity Coordination Team Food & Nutrition Coordination Team

Coordinator: Miriam Vollenbroek Coordinator: Regina Roller Wirnsberger
Co-coordinators: Federico Schena, Marit Dekker, Sandra Pais, Co-coordinators: Edwig Goossens,
Ana Maria Texeira, Alberto Jorge Carvalho Alves Maddalena Illario

Harmonisation of databases
Assessment of malnutrition as a risk factor for
- for physical activity programs
frailty
- for measuring physical activity and physical capacity

Knowledge generation on food supplements,

Identification of Good Practices through the integrators and innovative biomarkers
implementation of an A3 common, scaled up vision on
frailty dimensions and Scaling up Good Practices

Models of Care for Integrated Management, including Culinary approach

educational activities to support the management of
active and healthy ageing
- Treatment protocols to improve physical activity
Food supply, agriculture and nutritional
- Methods and tools to measure physical activity and
interventions
progress over time

Identify and Implement Enabling Technologies by scaling up Dissemination, Empowerment, Training, Regulatory
of good practices focusing on the exploitation of ICT tools Issues and Cost Evaluation

Translation of knowledge towards the different stakeholders ICT support tools

 Areas for Collaborative Work

Cognitive Decline Coordination Team Caregivers Coordination Team Frailty Coordination Team
Coordinator: Antonio Cano Coordinator: Costanca Paul Coordinator: Marcello Maggio
Co-coordinators: Carol Holland, Co-coordinators: Ronan OCaoimh, Co-coordinators: Giuseppe Liotta, Marta Castro,
Isabel Varela-Nieto Francisco Orfilia Pasquale Abete

Gain knowledge of clinical features Assessment of frailty in Community

Cognitive decline
across different older adults dwelling older adults

Improve comparability and potential

Research on the determinants of frailty
merging of ongoing databases or Care of cancer patients
analyses

Increase weight and consistency of

Teaching ICT to people over 65 Interventation to prevent frailty
existing cohorts in Europe

Dissemination of the culture of Integrated management of frailty &

prevention multimorbidity

Training for caregivers and their

Education and training
impact on patients' health

ICT support tools

Grazer Malnutrition Screening Score

Roller RE et al. The Grazer Malnutrition Screening (GMS) Score: a new hospital screening tool for malnutrition. Br J Nutrition 2016,115:650-657.
The Dietary Logic Process

Admission

Screening
Physician / Nurse

NO
Risk Factors

Assessment Hospital food /

Referral dietitian Diet form
(physician / Nurse)

Causes
Activities Re-Screening
- Planning / Realizing Physician / Nurse
Action algorithm
- Evaluation Discharge
- Adaptation (Doctors letter, nutrtitional therapy plan,
- Documentation nutritional counselling, interface management)
Grazer Malnutrition Screening Score

Roller RE et al. Br J Nutrition 2016,115:650-657.

Grazer Malnutrition Screening Score

Roller RE et al. The Grazer Malnutrition Screening (GMS) Score: a new hospital screening tool for malnutrition. Br J Nutrition 2016,115:650-657.
Health

WHO (1948): Complete physical, mental and

social well-being, not merely the abcense of
disease and infirmity.

Huber (2011): The ability to

adapt and self manage.
The Older European
Citizens...

Their growing number

presents a challenge to all
health care providers.
2011 2050
Population 8,4 Mill. 9,4 Mill.
60+ 23 % 34,5 % Patients over 70 years of age
account for more than 15 %
of attendances to EDs.
 Strengths and Shortcomings

Main success of the AG

A multistakeholder group (interdisciplinary
professionals, endusers)
Integrated approach to frailty

Strong focus on PREVENTION and HEALTH PROMOTION

EVIDENCE BASED, multidimensional interventions on frailty
UNIVERSITIES: an added value for research, training and life-long learning
ADVOCACY organizations: an added value for the adoption of innovations
10 REFERENCE SITES involved
High economic impact of large scale implementation due to AVOIDED COST
 Future

Shift the focus in favour of a more proactive model,

change management, integrating health and social care
and stratifying care needs.

A3 partners are focusing on integrated and innovative

approaches from prevention to emergency and home
care.

Development, testing and implementation of new

models, strategies and tools for health promotion,
disease prevention, empowerment, self-care,
 Conference Bled, Slovenia,
November 13 & 14, 2017

Malnutrition and Frailty: definition and assessment tools

Tommy Cederholm, chair ESPEN international group

 Malnutrition and frailty
definitions and assessment tools?
Tommy Cederholm MD, PhD
Professor of Clinical Nutrition, University of Uppsala,
Senior consultant, Geriatrics, Uppsala University Hospital
Former Executive Committee member of ESPEN
ESPEN Guidelines on Terminology and Definitions. Clin Nutr 2017
 Frailty vs. Sarcopenia
Frailty Sarcopenia
A more complex syndrome A less complex syndrome
Muscle function and weight Muscle function and mass only
loss, vulnerability Multi-factorial
Age-related age, disease, inactivity, malnutrition
Mainly public health related Relevant for public health,
hospital care, elderly care...
Frailty is a result of primary
sarcopenia and undernutirtion Primary sarcopenia leads to frailty
Secondary sarcopenia is a result of
cachexia, inactivity, protein
deficiency
 Diagnosis of sarcopenia
Reduced muscle mass
2 SD below mean of muscle mass in a young ref population
Appendicular lean mass; e.g. <5.7 kg/m2 (w) <7.2 kg/m2 (m)
+

Impaired muscle strength/power

4 m walking speed; e.g. <0.8 (1) m/sec or
Reduced grip strength; e.g. 20 kg (f), 30 kg (m)

EWGSOP: Cruz-Jentoft et al. Age Aging 2010;39:412-23

IWGS: Fielding R et al. JAMDA 2011;12:249-256
FNIH: Studenski S et al. J Gerontol.2014;69:547-58
 Diagnosis of frailty

The Frailty Phenotype Canadian Study of Health and Aging

Linda Fried Criteria (2001)
- Frailty Index (Rockwood 2002)
-70 items counting deficits
Weight loss - Clinical Frailty Scale (Rockwood 2006)
Weakness - Clinical judgement on a 7-graded scale
- 1/Very fit.., 5/Mildly frail..., 7/Severly frail
Exhaustion
Slowness
Low physical activity

3 is Frailty
1-2 is Pre-Frailty

Fried L et al. Frailty in older adults:

evidence for a phenotype - the Cardio-
vascular Health Study. J Gerontol 2001
 Diagnosis of malnutrition
ESPEN initiative started 2013
Nutrition indicators considered and decided
Weight loss Working Group Ballot

Reduced food intake

Reduced appetite
Low BMI
Reduced lean mass
Reduced fat mass
Inflammation
Subjective evaluation ESPEN Working Group 2013-2015:
Functional measures Tommy Cederholm, Ingvar Bosaeus, Rocco Barazzoni, Juergen
Bauer, Andre Van Gossum, Stanislaw Klek, Maurizio
Muscaritoli, Ibolya Nyulasi, Johann Ochenga, Stphane
Schneider, Marian de van der Schueren, Pierre Singer

Cederholm et al. Clin Nutr 2015;34:335-40.

ESPEN suggestion for diagnostic criteria for malnutrition

Step 1. Risk screening by a validated instrument , e.g.

NRS-2002, MUST, MNA(-SF), SNAQ, ...
i.e. BMI, Weight loss, Reduced food intake, Disease severity

Step 2. Diagnosis is confirmed by

BMI <18.5 kg/m2
or
Weight loss >10% (indefinite time)/>5% last 3 mo
combined with either
BMI <20 (<70 y)/<22 (>70 y) or
FFMI <15 and 17 kg/m2 in women and men, respect.

Cederholm et al. Clin Nutr 2015;34:335-40.

Critical issues raised on the ESPEN criteria

Overly restrictive cut-offs that lead to low

prevalence figures and less reimbursement (when
available)
Body composition measurement techniques is
usually not available
Lack of criteria indicating pathophysiology, e.g. food
intake and inflammation
Ethnicity-adapted cut-offs are needed
Global Leadership Initiative on
Malnutrition (GLIM)
Renewed Global consensus process on
what diagnostic criteria to use 2015-
ESPEN, ASPEN/AND, FELANPE, PENSA
Modified Delphiprocess
Working group meetings
CNW/Austin Jan 2016
ESPEN/Copenhagen Sept 2016
CNW/Orlando Feb 2017
ESPEN/Den Haag Sept 2017
Target: ICD-11
 Criteria used in other tools
NRS- MNA- MUST ESPEN ASPEN/ SGA Fearon
2002 SF 2015 AND 2012 2011
Etiology
Reduced food intake Y Y Y Y Y Y Y
Severe disease Y Y Y Y Y Y Y
/Inflammation
Symptoms
Anorexia Y Y Y
Weakness Y Y
Signs/Phenotype
Weight loss Y Y Y Y Y Y Y
Body mass index Y Y Y Y Y
Lean/fat free /muscle Y Y Y Y Y
mass
Fat mass Y Y
Fluid retention Y Y
Muscle function; e.g. Y
grip strength
 GLIM consensus criteria decided
NRS- MNA- MUST ESPEN ASPEN/ SGA Fearon
2002 SF 2015 AND 2012 2011
Etiology
Reduced food intake Y Y Y Y Y Y Y
Severe disease Y Y Y Y Y Y Y
/Inflammation

Phenotype
Weight loss Y Y Y Y Y Y Y
Body mass index Y Y Y Y Y
Lean/fat free Y Y Y Y Y
/muscle mass
 GLIM Current status
Diagnosis of malnutrition requires at least
1 Phenotype criterion and
1 Etiology criterion

Phenotype Criteria Etiology Criteria

Weight loss (%) Low BMI Reduced Decreased food Inflammation
(kg/m2) muscle mass intake or
malabsorption
>5% over past 6 <20 if <70 years, By validated <50% of ER >1 Acute
months, or or body week, or any disease/injury or
>10% if greater <22 if >70 years composition reduction for >2 chronic disease-
than 6 months Asia: measuring weeks, or any related
<18.5 if <70 years techniques chronic gastro-
or intestinal
<20 if >70 years malabsorption
GLIM Consensus and final steps
Diagnosis is a 2-step process
Step 1: Screening for malnutrition risk
Step 2: Assessment for diagnosis
Malnutrition is graded by severity
Stage 1/Moderate
Stage 2/Severe
There are 3 phenotype and 2 etiology criteria
Final decisions on cut-offs are under way
Endorsement and dissemination
Up-date every 5 year

THANKS!
 Conference Bled, Slovenia,
November 13 & 14, 2017

Malnutrition and Frailty: definition and assessment tools

Josefa Kachal,
Ministry of Health Israel
Application, MSRA assessment tool for
Sarcopenia in the community-
pilot project in Israel

Josefa Kachal, RD MPH, Ronit Endevelt RD, PHD

Nutrition Division, Public Health Services, Ministry of

Health, Israel
Background

Sarcopenia is characterized by loss of muscle mass

and strength associated with physical performance
reduction (leading to FRAILTY)
Sarcopenia is still under diagnosed and undertreated

THE EUROPEAN WORKING GROUP ON SARCOPENIA IN

OLDER PEOPLE ( EWGSOP) definition of sarcopenia
includes measurements by trained operators of:
gait speed
handgrip and/or muscle mass

Age Ageing 2010;39:412-23.

 From: Sarcopenia: European consensus on definition and diagnosis Report
of the European Working Group on Sarcopenia in Older People

Therefore, the population to be screened for

sarcopenia needs to be prescreened with an
easy-to-use and broadly available
instrument.
The prevalence of elderly > 75 years with BMI below 23
according to social class (n~ 400,000)
The prevalence of elderly > 75 years who lost more than 10% weight in the last
two measurement according to social class (n~ 400,000)
Searching for an optimal self-filling validated
screening tool for Sarcopenia

Request to all ONCA member states for a validated

self-filling screening tool Feb 2017, in Prague May
2017.
Received the MSRA from the Netherlands- MOH
approved its use in Israel- Prof Cederholm gave his
approval
Translated it to from Italian to Hebrew and back
translated it to italian
Searching for an optimal self-filling validated
screening tool for Sarcopenia (continued)

Put it on the website of the MOH

requesting feedback on feasibility of filling in
the tool
Use in a telephone survey on falls conducted
by the Israeli center for disease control
(ICDC) sample of 2000 elderly
Questionnaire
with 5 or 7
questions
 Validation of the tool
The MRSA was validated in
elderly patients in the
community in Italy by using the
EWGSOP diagnostic criteria
Using the MRSA tool (7 items)
subjects with a score of 30 or
less had a 4 fold greater risk of
being sarcopenic than subjects
with a score higher than 30
(OR:4.20;95%CI:2.26-8.06).
The 'optimal threshold' is 30
points with sensitivity of 0.804
and specificity of 0.604.
MSRA - Translated into Hebrew
MSRA - Translated into Arabic
MSRA - Translated into Russian
Guidelines for those who
fill the MSRA tool:

If score is < 30 points, print the questionnaire and take it

to your GP (General practitioner) and ask for nutritional
treatment by a nutritionist .
GPs in all 4 HMOs in Israel will be informed about this
initiative.
When the score is > 30 points repeat this questionnaire
in half a year.
Each patient who fills the questionnaire will receive
general guidelines on the Mediterranean diet and physical
activity.
In the future we plan:

1. To put this questionnaire in the Patient Health

Record in all 4 HMOS in Israel- Patient Reported
Outcome Measures (PROMs).

2. To connect the questionnaire to the BI

(Business intelligence) of the HMOs medical
files.
Discussion
 Conference Bled, Slovenia,
November 13 & 14, 2017

Physical activity and healthy ageing

Mojca Blenku
 PANGeA project
Physical activity and nutrition for healthy ageing
and implementation potentials:
AHA.SI project - Longevity strategy for Slovenia
JA ADVANTAGE defining frailty at EU level
Assist. Prof. Dr. Mojca Gabrijeli Blenku,
National Institute of Public Health

2017 Optimal Nutritional Care for All Conference

Bled, Slovenia, 13. 14. november 2017
 PANGeA project
Physical activity and nutrition for successful ageing

http://www.pangeaeu.org/
rado.pisot@zrs-kp.si
 BR Valdoltra 2012Research activities - PANGeA
Valdoltra Bed rest (BR) study, 2012 research data

Univerza na Primorskem, Znanstveno raziskovalno sredie (UP ZRS), Slovenija

PANGeA
bed rest results

In old subjects remained lower than the baseline values

also at 14th day of recovery (P = .013)

MQS and EP declined after bed rest significantly only in old

by (P < .001) and (P < .001), respectively.

At 14th day of recovery quadripces maximal force recovered

completely, while quadriceps maximal power remained lower
compared to baseline by (P = .009)

At 14th day of recovery VO2peak fully recovered in young

whereas in old remained lower compared to baseline (P = .020)

Gait stride length decreased after bed rest only in old (P = .002),
but fully recovered at 14th day of recovery

Figure . Mean changes (with standard error) after 14 day bed rest (physical inactivity) in groups of young and older male participants.
Source: http://www.zrs-kp.si/monografije/single/nutrition-recommendations-for-older-adults-the-pan-2052
 Key PANGeA results
The study design compared the response to disuse (14-day bed rest) and recovery in
young and old subjects, and came to this conclusions:
i) the inactivity or bed rest period (14 days) was sufficiently long to induce a response in
the young as well as in the old,
ii) the impact of inactivity on muscle mass and function was greater in the old, while
iii) metabolic alterations were greater in the young, and
iv) the recovery of baseline conditions was slower in old.

The greater detrimental effect of physical inactivity and the delayed recovery in older
adults, documented by the PANGea bed rest study, strongly emphasize the importance of
an active life style in old age, avoiding or minimizing periods of inactivity particularly when
these are due to hospitalization (and thus bed rest).

Source: http://www.zrs-kp.si/monografije/single/nutrition-recommendations-for-older-adults-the-pan-2052
 Raziskovalne aktivnosti
Research - PANGeA
activities - PANGeA
Valdoltra Bed rest (BR) study, 2012 research data

Effects of the cognitive training during the bed rest on the characteritics of the
walking performance and other parameters (ie. endotelian function)
Effect of Computerized Cognitive Training during 14-day Bed Rest on
Dual-Task Costs Walking Performance in Healthy Older Adult Men,
Uro Marui1,2, Voyko Kavcic 3, Bruno Giordani4, Mitja Gerevi1, Romain
Meeusen2, Rado Piot1

Univerza na Primorskem, Znanstveno raziskovalno sredie (UP ZRS), Slovenija

 Research
Raziskovalne activities
aktivnosti - PANGeA
- PANGeA
1000 udeleencev na mnoinih meritvah, 2012/14
v Sloveniji (KP, LJ in KR) in Italiji (Trst, Gemono, Ferrara)

Univerza na Primorskem, Znanstveno raziskovalno sredie (UP ZRS), Slovenija

Aplication of the research knowledge - PANGeA

PANGeAphysical activity
parks, adapted for older
population

Univerza na Primorskem, Znanstveno raziskovalno sredie (UP ZRS), Slovenija

 AHA.SI project
and Longevity strategy for Slovenia
www.staranje.si
 Aims of the project
1. interconnect stakeholders in the field of active and healthy ageing
in Slovenia, including physical activity, nutrition and frailty;
2. increase awareness of general and various other public on the
importance of demographic change and a need to prepare and
adopt measures;
3. prepare a basis for the formulation of proposals for measures,
their timeframe, bearers of implementation and indicators for
ageing strategy for Slovenia;
4. contribute to reducing unjust inequalities among the older adults.

The Active and Healthy Ageing

in Slovenia has received
funding from the European
Union.
 Project topics

The project focuses on three subject areas:

1. Prolonged employment and delayed retirement including pre-retirement
activities (among other topics: healthy lifestyle in older age);
2. Active and Healthy Ageing for active and healthy older age (prevention of frailty,
falls prevention in a broader context, ageing in digital society, mental health,living
environment, empoverment of older adults)
3. Long-term care - integration of social and health services at a local level

The Active and Healthy Ageing

in Slovenia has received
funding from the European
Union.
Active and Healthy ageing in Slovenia
www.staranje.si/aktualno
Longevity strategy for Slovenia
http://www.umar.gov.si/fileadmin/user_upload/publikacije/kratke_analize
/Strategija_dolgozive_druzbe/Strategija_dolgozive_druzbe.pdf
 LIFE CYCLE CHANGES

Present model New model

Retirement/ Retirement
Old age Leisure time / Work/
Leisure job
time

Middle Work/job
ages
Education

Young Education
age

Longevity strategy for Slovenia

http://www.umar.gov.si/fileadmin/user_upload/publikacije/kratke_analize/Strategija_dolgozive_druzbe/Strategija_dolgozive_druzbe.pdf
 JA ADVANTAGE
MANAGING FRAILTY
http://www.advantageja.eu/index.php/about-us/what-is-ja
 JA ADVANTAGE

Frailty prevention approach (FPA), a common European model to

tackle frailty and indicate what should be prioritized in the next years
at European, National and Regional level and on which to base a
common management approach of older people who are frail or at
risk of developing frailty in the European Union (EU).

The identification of the core components of frailty and its

management should promote the needed changes in the organization
and the implementation of the Health and Social Systems. This will
support sustainable models of care.
 Conference Bled, Slovenia,
November 13 & 14, 2017

Breakout sessions

1. Organisation and finance of the national campaigns

Jupiter Suite
2. Opportunities for future nutritional care innovation: making more of 5
euro a day
Flora Floor 3, right of elevator
3. Government involvement in ONCA and connecting with WHO EURO
and EU nutrition initiatives
Venera Floor 5, right of elevator
 Conference Bled, Slovenia,
November 13 & 14, 2017

Cancer patients bill of rights for appropriate and prompt

nutritional support
Luca Gianotti
1. Right to correct information and nutritional counseling.
2. Right to nutritional screening and assessment. Every
cancer patient at nutritional risk, has the right to prompt
referral for comprehensive nutritional assessment and
support to clinical nutrition services.
3. Right to dietary prescriptions: every cancer patients at
nutritional risk or malnutrition.
4. Right to oral nutritional supplements.
5. Right to appropriate and prompt artificial nutrition.
6. Right to appropriate and safe home artificial nutrition
7. Right to nutritional support monitoring: collaboration of
both oncologists and clinical nutritionists.
8. Right to treatment for overweight-related health
problems during or after cancer treatment.
9. Right to psychological support: malnutrition and
overweight considerably affect body image and can
cause problems within families.
10. Right to participate in clinical nutrition trials.
 Conference Bled, Slovenia,
November 13 & 14, 2017

Group photo, then break!

10:45 11:15
 Conference Bled, Slovenia,
November 13 & 14, 2017

Key features for sustainability: selected issues from the

survey
Reports from break out sessions and discussion
Report by the patient groups from the morning session
Plenary discussion
 Conference Bled, Slovenia,
November 13 & 14, 2017

ONCA Strategy and Action Plan 2018 2020

Co-Chairs and Frank de Man

 Conference Bled, Slovenia,
November 13 & 14, 2017

Conference and workshop 2018

Anibal Marinho,
APNEP
 # Members
2000

1800

1600

1400

1200

1000

800

600

400

200

2006 2009 2012 2017

APNEP averages 60
new members every
year
 Conference Bled, Slovenia,
November 13 & 14, 2017

Summary key issues from the meeting

Anne de Looy and Olle Ljungqvist,

Conference co-chairs
Conference Bled, Slovenia,
November 13 & 14, 2017

Lunch!

Thank you all for joining us!