EPF Background Brief: Patient Empowerment
EPF Background Brief: Patient Empowerment
EPF Background Brief: Patient Empowerment
Empowerment
15/05/2015
Contents
1 Introduction .................................................................................................................................... 3
2 The policy context ........................................................................................................................... 3
3 Defining patient empowerment ..................................................................................................... 4
3.1 Empowerment or involvement? ............................................................................................. 4
3.2 EPF’s definition of patient empowerment.............................................................................. 4
3.3 EPF’s definition of Patient involvement .................................................................................. 5
3.4 The “EMPATHIE definition”: empowerment and involvement .............................................. 5
3.5 Discussion................................................................................................................................ 5
3.6 In a nutshell ............................................................................................................................. 7
4 Related concepts............................................................................................................................. 7
4.1 Meaningful patient involvement ............................................................................................ 7
4.2 Health literacy ......................................................................................................................... 8
4.3 Self-management .................................................................................................................... 9
4.4 Shared decision-making ........................................................................................................ 10
5 Important issues to consider ........................................................................................................ 11
2
EPF Background Brief: Patient Empowerment
The purpose of this short briefing paper is to clarify the concept of patient empowerment and
related concepts, as they are used by the European Patients’ Forum (EPF) in our campaign 2015-16.1
The aim of this paper is to help create a common understanding, rather than present one ‘definitive’
definition.
This paper was developed in consultation with the EPF internal Working Group on Patient
Empowerment and the Steering Group of the conference and campaign; it is not a formal policy
position statement of the European Patients’ Forum. The paper will be revised and further
developed in the course of the campaign, and may then undergo a formal membership consultation.
Patient empowerment is at the root of EPF’s vision and mission, as reflected in our Strategic Plan
2014-2020:
Chronic diseases are seen as a sustainability challenge for European health systems. This is usually
presented in terms of funding – our health systems cannot cope financially with chronic conditions
and the ageing population.
But from a patient’s perspective, the health systems are often unable to cope well with chronic
conditions because they do not meet patients’ needs.23
Financing of the health system plays a role (e.g. chronic underfunding, lack of adequate numbers of
healthcare professionals…), but often the system challenge has more to do with the way healthcare
is delivered and services organised: fragmentation of care is a major problem for patients, who often
have to “fight the system” just to get the care they need.
Chronic disease requires a fundamental shift from disease-centred to patient- and family-centred
approach, combining self-management in the community with well-integrated professional support
through the life-course. This implies the empowerment of patients and their involvement at every
level in the health system, ensuring active patient involvement in policy-making and in co-designing
of care services to meet their needs more effectively.
1
http://www.eu-patient.eu/Events/upcoming-events/conference-on-patient-empowerment/
2
See for example EPF paper on chronic diseases (2012) and healthy and active ageing (2011).
3
"Patients" is used in this paper for brevity, but it should be taken to include the whole family.
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EPF Background Brief: Patient Empowerment
EPF’s campaign aims to promote understanding of what patient empowerment means from the
patient perspective. We want to raise awareness among political decision-makers and stakeholders
of the concept of empowerment and commit them to concrete activities to promote the
empowerment and meaningful involvement of patients as equal and respected partners.
Empowerment is “a multi-dimensional process that helps people gain control over their own lives
and increases their capacity to act on issues that they themselves define as important.” Collective
empowerment is “a process through which individuals and communities are able to express their
needs, present their concerns, devise strategies for involvement in decision-making, and take
5
political, social, and cultural action to meet those needs.”
Empowerment is therefore a process through which people increase their capacity to draw on their
personal resources in order to live well with chronic conditions in their daily life, as well as navigate
the health care environment. Aspects of empowerment include self-efficacy, self-awareness,
confidence, coping skills, health literacy, etc. (see “Related concepts”, p.7).
Empowerment is not a simple process, nor is it necessarily linear. A patient can feel empowered in a
certain context, and disempowered in another. During the “patient journey”, her/his feeling of being
empowered can change according to the people and structures that she/he comes into contact with.
4
It is possible to say “I involve you”, which leaves the involved person in a passive position. But it is not possible to say “I
participate you”.
5
PaSQ, adapted from Luttrell et al. 2009 and the Duque project (www.duque.eu)
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EPF Background Brief: Patient Empowerment
3.3 EPF’S DEFINITION OF PATIENT INVOLVEMENT
In the PaSQ Joint Action, patient involvement is defined as follows:
Individual: the extent to which patients and their families or caregivers, whenever appropriate,
participate in decisions related to their condition (e.g. through shared decision-making, self-
management) and contribute to organisational learning through their specific experience as
patients.
Collective: the extent to which patients, through their representative organisations, contribute to
shaping the health care system through involvement in health care policy-making, organisation,
design and delivery.
3.5 DISCUSSION
The main drawback of the EMPATHIE definition is that it focuses only on the individual patient and
its scope is limited to managing life with a chronic condition, even though it does go beyond the
purely medical context. It does not include the notion of “critical awareness” and patients’ active
participation with the aim of changing the system.7 It also does not address the role of patient
organisations as representatives of the patient community in a wider sense whose role is to
advocate for the patient perspective at policy level.
6
EMPATHIE Summary Report, 30 September 2014 available at
http://ec.europa.eu/health/patient_safety/docs/empathie_frep_en.pdf
7
“Self-Management: A Background Paper”. Patrick McGowan, PhD, University of Victoria – Centre on Aging. 2005, p. 3
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EPF Background Brief: Patient Empowerment
The EPF definition of empowerment highlights the collective dimension of empowerment and the
importance of (political) action towards change: “…a process through which individuals and
communities 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.”
The overlapping spheres of personal and community empowerment can be illustrated by this
scheme by Christopher Rissel:
8
Source: article “Empowerment: the holy grail of health promotion?”, Christopher Rissel
From EPF’s point of view it is important to bear in mind the collective dimensions of empowerment
and the importance of patients’ involvement in health policy and service design as a patient
community, whose aim is to change the system to work better for (individual) patients and their
families.
Empowerment can be seen as a philosophy or vision, as well as a strategy. It is also system issue –
processes and structures can be seen as empowering if they enable people to gain knowledge and
develop skills needed to problem-solve and make decisions, taking control to the extent that they
wish. At the micro level (the individual patient), the healthcare professional is the most important
contact point for the patient and the system; (dis)empowerment often manifests in the patient-
professional relationship. At the meso level (organisation, e.g. hospital), the care delivery processes
or the design of the environment can be (dis)empowering. At the macro level (policy), factors that
contribute to (dis)empowerment can include information to patients or the lack of it,
implementation of patients’ rights laws, (lack of) opportunities for patients to participate in health
policy, (lack of) transparency of the system, etc.
8
Rissel C (1994) “Empowerment: the holy grail of health promotion?” Health Promotion International, Vol. 9 No. 1, pp. 39-
48. Oxford University Press, 1994.
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EPF Background Brief: Patient Empowerment
3.6 IN A NUTSHELL
Empowerment is:
A process (not static)
Non-binary (there are degrees of empowerment)
Non-linear (going ‘back’ as well as ‘forward’)
Context-dependent
Something that cannot be imposed by others, but can be facilitated
Both individual (patient) and collective (the patient community).
Driving force
Co-researcher
Reviewer
Advisor
Info provider
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“Patients take an active role in activities or decisions that will have consequences for the patient community, because of
Research subject
their specific knowledge and relevant experience as patients. The involvement must be planned, appropriately resourced,
carried out, and evaluated as to its outcomes, impact and the process itself, according to the values and purposes of all
participants.” (EPF project “VALUE+”, 2009).
10
Arnstein, Sherry R. "A Ladder of Citizen Participation," JAIP, Vol. 35, No. 4, July 1969, pp. 216-224. Accessed at
http://lithgow-schmidt.dk/sherry-arnstein/ladder-of-citizen-participation.html
11
PatientPartner (2010) project funded under EU FP7. www.patientpartner-europe.eu
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EPF Background Brief: Patient Empowerment
The illustration below from Bate and Robert (2006)12 shows how patient involvement, specifically in
healthcare, can progress from rather passive involvement to active partnership:
In addition to being a right, patient involvement is recognised as having benefits for developing
therapies and healthcare services in a way that benefits patients and society. EPF believes that
meaningful patient involvement in health policy and programmes will lead to services that provide
real value for patients, as well as reducing unnecessary services (waste). This is reflected in our
strategic goal 3: Patient involvement. “To advance meaningful patient involvement in the
development and implementation of health-related policies, programmes and projects in the EU.”13
From a patient’s perspective, the knowledge and competence gained through health literacy leads
to the strength and empowerment needed to manage well a disease and its impacts on quality of
life. Health literacy starts with good, easily understandable information: information is a tool
towards improved health literacy.
12
“Experience-based design: from redesigning the system around the patient to co-designing services with the patient”
Bate P and Robert G, Qual. Saf. Health Care 2006; 15; 307-310.
13
EPF Strategic Plan 2014-2020, p. 17.
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EPF Background Brief: Patient Empowerment
To make genuinely informed decisions about their health and treatment, it is vital that patients can
access all the relevant information needed to make those decisions, in an easily understandable
format. The health literate patient is then able to process, appraise and apply the information to her
or his own personal circumstances. This is usually defined as “functional” health literacy. More
advanced levels of health literacy are “interactive” health literacy (cognitive, literacy and social skills
that enable active participation in healthcare) and “critical” health literacy (the ability to critically
analyse and use information to participate in actions that overcome structural barriers to health).14
Patients’ information needs are diverse and vary according to age, socio-economic status, gender,
beliefs, preferences and coping strategies, and according to their general literacy, first language,
skills and abilities. Needs often change during the patient’s journey, as does the “empowerment
status” of the individual patient.
4.3 SELF-MANAGEMENT
Patients are “experts by experience”. Their perspective on chronic disease is unique: patients live
with the condition every day, learn to manage it themselves with support from healthcare
professionals, and by necessity learn to navigate the health system in order to get the right care.
Self-management is a key element of patient-centred care: in chronic conditions, the management
of the condition is mostly handled by the patient at home and in the community, so in this sense
patients already “self-manage”.
Self-management can be understood as a partnership between patients and the healthcare team:
the team should support patients in “living with” their illness and in managing the conditions and
their physical, psychological, emotional and social impacts. Through self-management support,
patients can develop the confidence, self-efficacy and skills to take control of their daily life and
attain the greatest possible quality of life. This also helps to make the best use of all available
resources by, for example, improving adherence, reducing hospitalisation and emergency visits, and
improving health outcomes.
Self-management, therefore, does not mean leaving the patient to cope on their own. It is a holistic
approach providing the appropriate support and tools according to each person’s individual needs
and preferences.
There are a number of theoretical models on self-management, including Bandura’s self-efficacy
theory. Self-efficacy “pertains to an individual’s belief in their capacity to successfully learn and
perform a specific behaviour. A strong sense of self-efficacy leads to a feeling of control and to the
willingness to take on (and persist with) new and difficult tasks. When applied to health, this theory
suggests that patients are empowered and motivated to manage their health problems when they
feel confident about their ability to achieve their goal. Interventions for improving self-care should
14
Nutbeam D. “Health literacy as a public health goal: a challenge for contemporary health education and communication
strategies into the 21st century”. Health Promotion International, 2000, 15(3):259–267. Cited in WHO, 2008.
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EPF Background Brief: Patient Empowerment
therefore focus on building confidence and equipping patients with the tools (knowledge and skills)
to set personal goals and develop effective strategies for achieving them.”15
There are also many ongoing initiatives to promote self-management as an aspect of patient
empowerment. The European Network on Patient Empowerment (ENOPE)16, of which EPF is a
member, includes organisations in several countries, some of which deliver evidence-based
programmes on chronic disease self-management and capacity-building, based on the Stanford
Model.17
All health professionals need to develop the necessary skills and attitudes to adapt to the new
patient role, shifting from a paternalistic medical model to a collaborative model. Key barriers
identified in the EMPATHIE study included lack of time/shortages of staff, and patients’ lack of
information – but attitudes of health professionals were seen as most important barriers by all
stakeholders.
Some existing training tools exist, such as education framework developed by the EU-funded ABC
project in 201118 which integrates many of the principles of patient-centred healthcare, including:
recognising the patient as an individual; listening actively to the patient; communicating; defining
objectives and purpose with the patient; exploring options and deciding together; and supporting
the patient.
15
Coulter A, Parsons S, Askham J (2008) “Where are the patients in decision-making about their own care?” Policy brief,
WHO for the European Observatory on Health Systems and Policies ; Ory M, Lorig K, et al, (2013). Medical Care, November
2013. P. 13.
16
www.enope.eu
17
http://patienteducation.stanford.edu/programs/cdsmp.html
18
“Managing and Supporting Medication Adherence. A framework for the education and training of health professionals in
Europe”, www.abcproject.eu
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EPF Background Brief: Patient Empowerment
A number of tools exist also for patients, such as decision-aids intended to help patients weigh the
benefits and potential harms of different treatment options. A recent Cochrane review found that
when patients use decision aids they: improve their knowledge of treatment options, feel more
informed and clear about what matters most to them, have more accurate expectations of benefits
and harms, and participate more in decision-making. Patients also tend to choose less
interventionist approaches to treatment.19 In accordance with this finding, a recent study in
Denmark found that 40% fewer patients opted for surgery (hip/knee replacement) after engaging in
a shared decision-process with a video explaining all the options.20
Some patients cannot even access basic healthcare, how could they even think about
empowerment?
Equity of access and patient empowerment are closely interlinked. At the same time, there are real
risks that empowerment approaches, if not carefully implemented, may exacerbate existing
inequalities. Some groups and individuals may be more in need of empowerment than others, and
“one size” is not likely to fit all needs.
EPF’s position is that equity and empowerment are both system issues: Health systems and services
should be designed to be empowering for all users, including disadvantaged or socially excluded
patients. Application of patients’ rights and human rights generally should be ensured, such as
meaningful informed consent focusing on the patient’s ability to make meaningful choice, rather
than on legal protection of healthcare staff; effective mechanisms should be in place to ensure non-
discrimination, both within the health system and outside the health system.22
19
Stacey et al. (2014) “Decision aids for people facing health treatment or screening decisions” Cochrane review.
http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD001431.pub4/abstract
20
http://patientsikkerhed.dk/in-english/publications.aspx
21
Coulter A, Parsons S and Askham J (2008) “Where are the patients in decision-making about their own care?” WHO
Policy brief, pp. 3-4.
22
See EPF's work on non-discrimination.
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EPF Background Brief: Patient Empowerment
EPF is developing with our membership a strategy to explore empowerment from the point of view
of potentially vulnerable, socially excluded or marginalised groups, and to propose strategies for
ensuring patient organisations are inclusive. At system level, health inequalities need to be
addressed via a comprehensive “Health Inequalities in all Policies” approach, including targeted
strategies (for example health literacy) for specific groups.
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EPF Background Brief: Patient Empowerment