1. Ensuring community care is provided in close collaboration with citizens and communities
Nicola Bedlington
Secretary General
24-26/09/2017
@eupatientsforum
The Citizen Voice in Primary Care; a social commitment to 'health for all’!

2. Overview 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

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

4. Mission and vision Our Vision!
“All patients with chronic conditions in Europe have equal access to high quality, patient-centred health and related care.”
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.”
We work on : cross-cutting issues of relevance to all patients with chronic diseases
Our Vision: all patients with chronic and/or lifelong conditions in the EU have access to high quality, patient-centred equitable health and social care.
Our Mission: to ensure that the patient community drives policies and programmes that affect patients’ lives to bring changes empowering them to be equal citizens in the EU.

5. Chronic diseases
Chronic diseases account for up to 80% of healthcare costs in terms of premature deaths, healthy life years lost, and lost productivity
(OECD, 2016)
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. Patients and carers
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.

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

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 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 )
A process: non-binary, non-linear
Cannot be imposed from top-down
Individual + Collective
A process – non-binary, non-linear
Cannot be imposed from top-down – needs changes at all levels
Individual but also collective (patient community)
What it is not: shifting responsibility on to patients inappropriately
An empowered patient has control over the management of their condition in daily life. They take action to improve the quality of their life and have the necessary knowledge, skills, attitudes and self-awareness to adjust their behaviour and to work in partnership with others where necessary, to achieve optimal well-being.
Differentiation with patient involvement
Empowerment interventions aim to equip patients (and their informal caregivers whenever appropriate) with the capacity to
participate in decisions related to their condition to the extent that they wish to do so;
become “co-managers” of their condition in partnership with health professionals;
develop self-confidence, self-esteem and coping skills to manage the physical, emotional and social impacts of illness in everyday life.

10. EMPATHIE: 3 facets of empowerment
MACRO level
Normative standards
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…
Patient
rights-laws
MESO level
Monitoring performance
Good practices
standards
Curricula models
Virtual
communities
MICRO level
Incentive based
systems
Strategies of PE addressed to
PROFESSIONALS
Strategies of PE addressed to
PATIENTS
Providing information
Group information
sessions
HEALTH LITERACY
Communication
skills
Web based
Interventions
Multidisciplinary teams
Virtual personalized
support
SELF-MANAGEMENT
SHARED TREATMENT DECISION MAKING
Technical skills
Patient-professional
relationship interventions
Behavioral change support
Self-efficacy interventions
Decision aids
Emotional and psychological support
EMPATHIE study, final report (2014) available at

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

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. The Roadmap for action Identifies priority areas for further action
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
Health literacy & information
Professional training & skills
Self-management support
Patient-driven technology solutions
Patient involvement in patient safety
Patient centredness in healthcare
Patient involvement across the R&D lifecycle
Patient involvement in health policy

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

15. Primary care
Need for evolution of healthcare professionals’ training
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 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. The patient-professional relationship
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

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. Health literacy
Why is it important?
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!
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.
Patient empowerment is a profound challenge to the current health/care system
We have a discourse where individuals are told to “take more responsibility” for their health – but the system is not supporting them to do so
People are faced with more complex decisions, in an environment where there is simultaneously an “overload” of information and yet a perceived lack of good, relevant, understandable information
Navigating the healt/care maze is challenging even for people who are highly educated and health literate
The Health system can be profoundly disempowering – it encourages passivity and discourages patients’ active participation

22. Low HL makes it difficult to…
Fill out a medical form
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 & act upon medical advice
Read a medicine information leaflet
Understand a vaccination chart
Find the right treatment
Maintain healthy lifestyle

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)
Patient empowerment is a profound challenge to the current health/care system
We have a discourse where individuals are told to “take more responsibility” for their health – but the system is not supporting them to do so
People are faced with more complex decisions, in an environment where there is simultaneously an “overload” of information and yet a perceived lack of good, relevant, understandable information
Navigating the healt/care maze is challenging even for people who are highly educated and health literate
The Health system can be profoundly disempowering – it encourages passivity and discourages patients’ active participation

24. Being health literate empowers people
Being health literate enables people for example
To evaluate information for its quality and trustworthiness
To understand information about their health
To reflect on and explore alternative options
To make more informed decisions
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)
A key dimension of a citizen’s right to health and of patient empowerment
Has major economic consequences
Essential for equity, quality and efficiency of patient-centred healthcare systems

25. European research showed that…
Across 8 European countries, nearly 1 person in 2 had limited health literacy – not only vulnerable groups
HLS-EU (2012): 47% of respondents had limited health literacy (8 countries: Austria, Bulgaria, Germany, Greece, Ireland, Netherlands, Poland and Spain)
Health Literacy is a problem for the general population, not (only) for particular groups
0-25 Points
>25-33 Points
European Health Literacy Study (HLS-EU), 2012
>33-42 Points
>42-50 Points

26. Health literacy: a system challenge
This figure presents a set of 10 attributes of health-literate health care organizations.
These strategies are not meant to be prescriptive. There are many paths to becoming a health-literate organization. Also it is based on US model.
EXAMPLE 1: Designs easy to use materials
EXAMPLE 2: Include consumers: includes populations served in the design, implementation and evaluation of health information and services.
 THE IDEA BEHIND: Health citizenship requires a combination of personal and social responsibility from individuals, but even more so it requires the institutions of society to promote choice, empowerment, self-management, responsiveness and participation in health and well-being.

27. Digital Health

28. Patients’ expectations of digital health care
Patient empowerment and involvement in the care process as equal partners with HCPs
Facilitates chronic disease management, self-management
And leads to improved quality of life
Information,
Health literacy
Patient centred care as opposed to disease centred and better integration of healthcare
1. eHealth is often cited as a solution towards sustainability of healthcare, in a context of growing healthcare demand due to demographic change, and shortages of healthcare professionals.
2. There are a number of expectations linked to eHealth. Patients expect that eHealth will:
------
3. eHealth is also understood as a means to more effectively provide or exchange information.
patient centred care as opposed to disease focused, and also better integration of healthcare. They also expect eHealth services to bring added value in terms of improved adherence, and quality of life. They also have expectations that technologies will lead to empowerment through providing patients with more knowledge on their condition and facilitating their involvement in the care process alongside healthcare professionals.
In its eHealth action plan ( ), the European Commission noted that eHealth could help improve chronic diseases and multimorbidity management, enhance patient centric care, foster cross-border healthcare, and increase efficiency of healthcare systems and equity of access.
Added value in terms of improved adherence to treatment

29. Some figures… Do patients want to be more empowered?
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
While eHealth has the potential to bring forward many benefits for patients, there is also a lack of awareness and confidence in eHealth solutions from patients and healthcare professionals.
the action plan also acknowledges that healthcare has fallen behind in adopting ICT solutions effectively, compared to other sectors. Key obstacles mentioned in the eHealth action plan include technical (interoperability) and legal barriers, and lack of user-friendly tools and services.

30. My Air Coach
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
Examples of solutions developed by EPF members, developed by patients
myAirCoach Solution
myAirCoach project aims to support asthma patients to control their disease through mHealth. New monitoring approaches, combined with the development of novel sensors will form a system that will address the needs of patients on a daily basis. Analysis, modelling and prediction of disease symptoms will serve to stimulate patients to engage in health management, and also increase the knowledge about the possibilities that mHealth can bring to asthma control.

31. My Dystonia App
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
MyDystonia
MyDystonia gives the physician a reliable overview ahead of the consultation, helping to
save time. It also helps the patient keep track of their symptoms and how effective their
treatment is. This has led to improved communication and treatment outcomes.

32. Meaningful Patient Involvement
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
Health literacy:
Navigating the health ‘maze’ is challenging… even more so if you have low health literacy.
Health literacy not only means accessing and understanding the information but it also means the capacity to use it, appraise it and adapt and apply it to your own needs and life. Being health literate empowers people.
Health literacy for all, means considering differences in health literacy and being sensitive to this. And technology (if not developed with patients), can potentially make navigating healthcare systems even more complex.
In order to be empowering, a solution needs to be made (and developed) to meet a need. Technology should not be just a ‘fancy’ tool/ solution that does not help resolve / does not have any link to a real-life problem or need.

33. EPF digital health policy objectives
Digital health has been a policy priority for EPF over the last 7 years with the following objectives:
To acquire thorough understanding of patients’ needs and perspectives on digital health
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.
To ensure that implementation of digital health services is accompanied by strategies for strengthening health literacy and patient empowerment
Digital health became a strategic priority for EPF following the adoption of the first EPF Strategic Plan in 2007 and has remained as such ever since.
EPF identified a number of policy priorities to “guide” our work on digital health

34. Patient involvement

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

36. Patient involvement What is needed?
Too often patients’ feedback on one-off issues is sought, rather than their influential involvement in the broader context
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

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. Meaningful Patient Involvement
Build on our ‘assets’ to date
Value +;
EPF Charter and Roadmap on Patient Empowerment;
PROSTEP, PISCE , EMPATHIE.
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. Vulnerable Groups
What does EPF do?
Inclusiveness and non-discrimination is a core value of EPF
EPF also helps build sustainable patient organisations
To combine those goals we developed the “roadmap towards inclusion of vulnerable groups’ perspective within patients’ organisations”
Focus on: Undocumented migrants, LGBTI, Roma, Homelessness, Disabilities

41. UN SDGs - The Road to Universal Access in the EU by 2030
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
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
WHAT IS THE CAMPAIGN ABOUT
1. Patients’ access to healthcare is a long standing priority for EPF and its membership, and is at the heart of the vision of the organisation.
The campaign refers to the UN SDG on health as a leverage to raise the profile of health at EU and MS level.
2. According to the UN sustainable development goals, EU member states need to achieve …
Similarly the European Commission has also committed to supporting MS in this task.(reference)

42. Campaign’s Strategic Objective
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
1. In this context, EPF’s campaign aims to contribute to making universal access a reality for all EU patients by 2030.
Under the tagline…
(Finish: The campaign has been framed following this overarching strategic objective, which has been developed by EPF’s working group on access.(

43. “I am the most important member of my care team”
Conclusion: From doing “to”…
“Patient-centred care”…
“I am the most important member of my care team”
In order to avoid specific terminology: emphasise the idea of genuine partnership, where the two kinds of knowledge – that of the patient and that of the professional – are complementary
… to doing BETTER WITH patients!

44. Conclusions 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

45. Thank you