1.
ENSURING COMMUNITY CARE IS
PROVIDED IN CLOSE COLLABORATION
WITH CITIZENS AND COMMUNITIES
@eupatientsforum
24-26/09/2017
The Citizen Voice in Primary Care; a
social commitment to 'health for all’!
Nicola Bedlington
Secretary General

2.
• About EPF
• Patient empowerment in a community setting?
• Health literacy: a cornerstone of empowerment
• What can digital health contribute?
• Patient involvement: why it matters
• Inclusiveness- leaving no-one behind
• Conclusions
Overview

3.
• European Patients’ Forum
– Umbrella organisation
– Active since 2003
– Independent & non-governmental
– EU patients’ voice
• Our members
– 74 patients’ groups
– Disease-specific EU & national coalitions
About EPF

4.
Our Vision!
“All patients with chronic
conditions in Europe have equal
access to high quality, patient-
centred health and related care.”
Mission and vision
Our Mission!
“to be the collective, influential patient
voice in European health and related
policies and a driving force to advance
patient empowerment and patient
access in Europe.”

5.
Chronic diseases account for up to 80% of healthcare
costs in terms of premature deaths, healthy life years
lost, and lost productivity
(OECD, 2016)
Chronic diseases
Multimorbidity is increasing at a significant
rate and poses a particular burden on patients
and families, as well as specific challenges to
healthcare delivery and organisation
(Business and Industry Advisory Committee)

6.
Demographic ageing in Europe is leading to a growing incidence
of age-related diseases, a growing demand for care and a
serious sustainability challenge for our social and health care
systems.
Recent research -80% of the care provided in Europe today is
actually provided by families and friends. Care will be more
effective if patients and their carers are perceived as partners
in care and are involved in the decisions that affect them all
along the care pathway.
Patients and carers

7.
Hospital
& health
system
Social
insurance
system
School
system
Social
network
Other
GP
Specialist
Physio
Psychologist
Personal
assistance
Medicines
Pharmacist
Pre-school
Special
school School
nurse
Neighbours
Relatives
Friends
Spouse
Siblings
Home
adaptations Housing
Equipment
Employer
Colleagues
Patients’ needs at the centre

8.
Empowerment

9.
Our definitions of empowerment
“A process that helps patients gain control over their lives,
increasing their capacity to act on issues that they
themselves define as important”
(Adapted from JA-PaSQ, 2012)
A process: non-binary,
non-linear
Cannot be imposed
from top-down
Individual +
Collective
“A process through which individuals and groups are able to
express their needs, present their concerns, devise strategies
for involvement in decision-making, and take (political, social,
and cultural) action to meet those needs”
(PaSQ, adapted from Duque project http://www.duque.eu/ )

10.
EMPATHIE: 3 facets of empowerment
MACRO level
MESO level
MICRO level
Virtual
communities
Good practices
standards
Patient
rights-laws
Technical skills
Group information
sessions
Incentive based
systems
SHARED
TREATMENT
DECISION MAKING
HEALTH
LITERACY
SELF-
MANAGEMENT
Strategies
of
PE
addressed
to
PROFESSIONALS
Strategies
of
PE
addressed
to
PATIENTS
Normative
standards
Monitoring performance
Curricula models
Decision aids
Web based
Interventions
Patient-professional
relationship interventions
Communication
skills
Virtual personalized
support
Providing information
Multidisciplinary
teams
Behavioral change
support
Self-efficacy interventions
Emotional and psychological support
• Health literacy
– Information, ICT tools,
system factors…
• Self-management
– Skills, behaviours, self-
efficacy, psychological-
emotional support…
• Shared decision-making
– Relationship
– Decision aids
– Communication
– HCP skills, attitudes…
EMPATHIE study, final report (2014) available at http://ec.europa.eu/health//sites/health/files/patient_safety/docs/empathie_frep_en.pdf

11.
01 Education. Making informed decisions
with the right information and support.
02 Expertise. Patients’ unique expertise
derived from lived experience is a valuable
resource.
03 Equality. Equal partnership between
patients and professionals.
04 Experience. Patients’ organisations
channel the patient community’s collective
voice.
Equality
Experien
Education
Expertise
05 Engagement. Patients as well as the whole
society for better health services and policy.
Engagement
→ Patients prescribe E5 for Better Health Systems!
Campaign on Patient Empowerment
Link to the campaign: http://www.eu-patient.eu/campaign/PatientsprescribE/

12.
EPF Patient Empowerment Campaign
• Patient’s Charter
• 10 fundamental principles of patient empowerment
• Can be applied to local context or national healthcare system
• Roadmap for Action
• Propose concrete actions
Supported by:
and by unrestricted grants from GSK, Amgen and MSD.

13.
• Gives direction and inspiration,
rather than a prescription
• Takes a long-term view
• Who should act? All relevant
stakeholders in each area
• Need to develop a new,
collaborative mind-set to cut
through existing “silos” and
develop solutions together –
always with patient
organisations as partners
The Roadmap for action
Identifies priority areas for further action
1. Health literacy & information
2. Professional training & skills
3. Self-management support
4. Patient-driven technology solutions
5. Patient involvement in patient safety
6. Patient centredness in healthcare
7. Patient involvement across the R&D
lifecycle
8. Patient involvement in health policy

14.
“Integrated” = person-centred
www.nationalvoices.org.uk/
For a patient/carer “integrated” means person-centred, coordinated care

15.
• Shared decision-making is an intrinsic part of patient
empowerment
• HCP want to develop their “soft skills” further (shared
decision-making, listening, supportive and effective
communication, empathy and partnership)
Primary care
Need for evolution of healthcare professionals’ training
Primary care and community care are particularly
important environments for professionals to
develop such skills further because of their close
contact with patients (often “case coordinators”)

16.
• Shared decision-making, self-management
• Health professionals’ knowledge, skills, attitudes:
• Patient as active and equal partner
• Communication
• Knowing how to listen, elicit preferences
• HCP need to work in a team with others
A fundamental shift in medical culture
From paternalistic to partnership
HCP education and training
The patient-professional relationship

17.
Example: “lay-friendly” clinical trial results

18.
Example: “lay-friendly” clinical trial results
• Patients may read information
online that they will want to
discuss with their healthcare
professional;
• The professionals also need to
familiarise themselves with the
information sources that patients
use.
Professionals will need to engage in a proper
discussion on what the information means before
any meaningful decision can be (jointly) made

19.
Health Literacy

20.
• Self-management is one of the aspects
of patient empowerment (along with
shared decision-making)
• Both aspects are highly relevant in a
primary care context
• health literacy is a vital skill that
patients and professionals!
Health literacy
Why is it important?
Need to have to optimise the interaction
between patient and provider.

21.
What is health literacy?
“people’s knowledge, motivation and competences to access,
understand, appraise, and apply health information in order to
make judgments and take decisions in everyday life concerning
healthcare, disease prevention and health promotion to
maintain or improve quality of life during the life course.”
(Sørensen et al., 2012)
• Encompassing literacy skills
• But also the capacity to judge
• and to take action based on your
judgement.

22.
Low HL makes it difficult to…
Vulnerability factors include: low education, low perceived
health, low social status, low financial status, age 76+, long-term
health condition…
… but even highly educated people can have inadequate HL
Understand a
vaccination
chart
Fill out a medical
form
Find the right
treatment
Maintain healthy
lifestyle
Read a medicine
information
leaflet
Understand & act
upon medical
advice

23.
Low HL has a health & economic impact
Low health literacy associated with:
• Less use of preventive services
• Poor management of chronic conditions
• Higher mortality
• More medication errors
• Misdiagnosis due to poor communication between providers
and patients
• Low rates of adherence to treatments
• More hospital readmissions
Cost of low health literacy can be 3-5 % of total healthcare costs
at health system level
(“The Costs of limited health literacy: a systematic review”, Eichler K, Wieser S, Bruegger U, Int J Public Health, 2009; 54(5):313-24)

24.
Being health literate empowers people
Being health literate enables people for example
 HL is a key dimension of patient empowerment
(EMPATHIE, 2014)
 HL is essential for health systems that are equitable,
high quality and patient-centred (WHO, 2013)
 More advanced concept of HL as a key enabler of societal
participation and overcoming structural barriers to health (Nutbeam,
2000)
To understand
information about
their health
To evaluate
information for its
quality and
trustworthiness
To make more
informed decisions
To reflect on and
explore alternative
options

25.
European research showed that…
European Health Literacy Study (HLS-EU), 2012
0-25
Points
>25-33 Points >33-42 Points >42-50 Points
Across 8 European countries, nearly 1 person in 2 had limited health literacy –
not only vulnerable groups

26.
Health literacy: a system challenge

27.
Digital Health

28.
Facilitates
chronic disease
management, self-
management
And leads to improved
quality of life
Added value in terms
of improved
adherence to
treatment
Patient
empowerment
and involvement
in the care
process as equal
partners with
HCPs
Patient centred
care as opposed to
disease centred
and better
integration of
healthcare
Information,
Health literacy
Patients’ expectations of digital health care

29.
• 92% of patients are willing to play a more active role
in managing their own condition
• 60% of patients (and 70% of HCP) would be willing
to use eHealth in the short-medium future
• … but only 48% think they are ready to handle the
additional responsibilities presented by eHealth
• Similar trends for HCPs
Some figures…
Do patients want to be more empowered?

30.
• European Federation of Allergies and Airways
Diseases’ Patient Associations (EFA)
• Partner in the EU project “myAirCoach”
• Aims to support asthma patients to control their
disease through mHealth
• Advisory Patient Forum - formed of 22 asthma
patients, to make sure that the system under
development addresses their needs
My Air Coach

31.
• Dystonia Europe developed the MyDystonia app for patients
• MyDystonia: an electronic diary created for people with the
neurological disease Dystonia
• By answering predefined questions (e.g. symptoms like
overactive muscles or pain) the user is able to examine
his/her well‐being according to the treatment schedule
• Led to improved patient-HCP communication and treatment
outcomes
• The App was initiated, designed and developed by patients
for patients. Dystonia Europe has 100% ownership of the
project and the app is currently being rolled out in 10
countries
My Dystonia App

32.
• Need to acquire thorough understanding of patients’ needs
and perspectives, with patients at the centre of digital health
and care design
• Ensure that the digitalisation of health and social policies and
systems is accompanied by strategies for strengthening
health literacy and patient empowerment
Patient-centred digital technologies: privacy by default and
accessibility (including affordability) and design for all
Meaningful Patient Involvement

33.
Digital health has been a policy priority for EPF over the last 7
years with the following objectives:
1. To acquire thorough understanding of patients’ needs and
perspectives on digital health
2. To ensure that digital health services are designed, assessed, and
implemented in a patient-centred way and ensure that eHealth
policies and programmes effectively enable and promote patient-
centeredness.
3. To ensure that implementation of digital health services is
accompanied by strategies for strengthening health literacy and
patient empowerment
EPF digital health policy objectives

34.
Patient involvement

35.
Patients have a specific expertise derived from
simply being patients, which is a valuable source
of experiential knowledge.
Meaningful patient involvement
What does it mean?
How can patients be involved?
PatientPartner FP7 Project
(2010),
www.patientpartner-europe.eu

36.
Patient involvement
What is needed?
Sustainable and scaled-up patient
involvement are needed: this requires
resources and support (including
communications and administrative
support) from various local stakeholders
There is a need to define better what is
“good” practice in patient involvement from
the patient perspective
Too often patients’ feedback on one-off
issues is sought, rather than their influential
involvement in the broader context

37.
Mission: Empowering patients for their key role in
health-related research
Public
Research
Ethics Committees
Competent authorities
Policy makers
/Research Policy
HTA agencies
& committees
Research subject
Info provider
Advisor
Reviewer
Co-researcher
Driving force
Clinical Research
demographic ageing

38.
• Build on our ‘assets’ to date
– Value +;
– EPF Charter and Roadmap on Patient
Empowerment;
– PROSTEP, PISCE , EMPATHIE.
Meaningful Patient Involvement
• Develop a patient-led framework on good practice
on patient involvement
– Recommendations – PI as a ‘sine qua non’, added value;
– Support adoption of good practices: co-design and evaluation of
healthcare, health research, patient-driven technology solutions.

39.
Inclusiveness

40.
To combine those goals we developed the
“roadmap towards inclusion of vulnerable
groups’ perspective within patients’
organisations”
Vulnerable Groups
What does EPF do?
Inclusiveness and
non-discrimination is
a core value of EPF
EPF also helps build
sustainable patient
organisations
Focus on: Undocumented migrants, LGBTI, Roma, Homelessness, Disabilities

41.
• Goal 3: Ensure healthy lives and promote well-being for all at all
ages
• Key target: achieve universal health coverage by 2030, including
financial risk protection, access to quality essential health-care
services and access to safe, effective, quality and affordable
essential medicines and vaccines for all
UN SDGs - The Road to Universal
Access in the EU by 2030
Universal health coverage is an
important way of tackling health
inequalities – patients and citizens
will not make use of primary or
community care if the co-payments
are too large

42.
Campaign’s strategic objective: The EPF Access
campaign will contribute to making universal
access a reality for EU patients by 2030, through
defining and promoting concrete actions, in
concert with the health community, to which
decision makers need to commit, to ensure we
achieve the Health SDG by 2030
Campaign’s Strategic Objective

43.
Conclusion: From doing “to”…
“Patient-centred care”…
… to doing BETTER WITH patients!
“I am the most
important
member of my
care team”

44.
• Chronic diseases affect a large part of the population
• In order to achieve better healthcare also in
community setting- patient empowerment is vital
• A change in attitudes of healthcare professionals but
also health literacy for patients
• Digital technologies can be a great enabler
• Inclusiveness and non-discrimination is a cross-
cutting issue
Conclusions

45.
THANK YOU
www.eu-patient.eu