healthmedicinet

A brief summary of the findings from each data source will be presented, followed
by presentation of the emergent conceptual map of patient empowerment (See Fig. 2). Analysis and synthesis across the two data sources enabled identification of five
key components of patient empowerment: underpinning ethos, moderators, interventions,
indicators and outcomes.

Figure 2. A conceptual model of patient empowerment

Synthesis of the literature

A total of 164 citations were retrieved, and 20 articles were removed after title
scanning. 144 abstracts were read and, after assessment, 108 full articles were subjected
to detailed assessment. Forty-one of these (38 %) were removed because they did not
include a definition of patient empowerment. 67 articles were finally included for
full data extraction and analysis (See Additional file 2).

Overall, 52 % of the articles were classified as empirical research (16 used quantitative
methods, 13 used qualitative methods, and six used mixed methods), 48 % as literature
reviews, essays, commentaries and editorials. Empirical studies were conducted in
Europe (68 %), North America (17 %) and Asia (15 %). Citations to 43 other published
definitions of patient empowerment were identified among the 67 included articles,
but 38 % of included articles did not cite a published definition of patient empowerment.
Funnell et al’s 29], 30] definition of patient empowerment was the most frequently cited definition, cited
by 11 % of the 67 included articles, followed by Aujoulat et al.31] (6 %), Anderson et al. 5], 32], 33] (6 %), Lau 34] (5 %) and Gibson 35] (5 %). Table 3 provides a list of the most frequently cited definitions of patient empowerment identified
(at least 3 citations or 5 %).

Table 3. Most frequently cited definitions of patient empowerment

Definitions of patient empowerment identified in the literature were diverse, with
some definitions focusing on patient empowerment as a transformative process that
patients go through as they gain control of their health and healthcare and adapt
to having a chronic disease (LTC), others focusing on principles or ethos underpinning
patient empowerment (e.g., autonomy, self-determination), and others defining patient
empowerment in terms of interventions that aim to foster self-management of LTCs (Tables 3 and 4). Definitions of patient empowerment were also diverse in terms of whether they focused
on the patient level, the healthcare provider level or the healthcare system level
(Tables 3 and 4). The components identified in the qualitative analysis of these definitions are
mapped in a diagram in Fig. 2 and described in more detail below.

Table 4. Exemplars demonstrating contribution of the three data sources to development of the
conceptual map of patient empowerment

Thematic analysis of the published definitions of patient empowerment enabled development
of an initial conceptual map of patient empowerment to be drafted, identifying key
underpinning assumptions (later changed to underpinning ethos), interventions, moderators,
indicators and outcomes of patient empowerment. Table 4 presents the five emerging components in narrative form with exemplars illustrating
how each of the data sources, and critique by the Cochrane Healthcare Quality Research
group contributed.

Interviews with key informants

Nineteen interviews were conducted: four with primary care clinicians, four with health
researchers, four with health managers, four with patients affected by LTCs, and three
with patient representatives from organisations supporting people affected by LTCs.
Most participants were female (62 %). Interviews lasted on average 27 min. The shortest
interview was carried out with a health manager and lasted 15.51 min. The longest
interview was given by a patient representative and lasted 54.36 min. Although interviews
were intended to last approx. 45 min, interviews were not rushed and interview duration
was driven by topic discussion and willingness of participants to contribute. The
initial (interim) framework developed from thematic analysis of the definitions of
patient empowerment extracted in the scoping literature review guided analysis of
the interview transcripts.

The interviews contributed further to identification of underpinning ethos, interventions,
moderators, indicators and outcomes of patient empowerment. Exemplars illustrating
contributions of the interviews to development of the conceptual map in narrative
form are presented in Table 4. When asked about patient outcomes, many participants mentioned that although empowerment
is a key benefit for people with LTCs, they found it difficult to define or explain
what they understood patient empowerment to be. This is illustrated in the following
extract from an interview with a Patient representative affected by a LTC:

“If you went to a group of people and said ‘how can we empower you?’ I think they
might look at you as if you were a bit mad really because I think even most intelligent
group of patients would wonder what the definition of that is. It’s interesting because
you started off asking me what I thought empowerment was almost so I think there’s
in my experience there’s lots of different definitions to that”.

This supports findings from the scoping literature review regarding diversity of patient
empowerment definitions, and lack of clarity and consensus on what patient empowerment
means. Although data saturation was not confirmed in the present study, it was notable
that some healthcare providers emphasised patient responsibility for LTC self-management,
whilst patients were more inclined to emphasise control, as demonstrated by these
two contrasting quotes:

“Self-responsibility for health… understanding that me, myself and I is an important
participant in my issues and my health” (Health manager)

“You put a person with a lung condition in front of a doctor or a nurse and they become
a patient… if you really want true empowerment you gave back a bit of the control
to the patient” (Patient representative)

Regular critique of the developing conceptual map by the Cochrane Healthcare Quality
Research group helped to further clarify underpinning ethos, interventions, moderators,
indicators and outcomes of patient empowerment. Some of the key suggestions made by
group members are included in Table 4 (attributed to Experts group). Importantly, these discussions contributed to developing
relationships described among components of the conceptual map, and facilitated graphical
representation. At the final meeting, the group suggested (i) changing the wording
in the “Healthcare System Level: Ethos” box from Minimise healthcare service use to Optimise healthcare service use, and to add Optimise healthcare service use to the “Patient Level: Ethos” box, as well as the “Healthcare Provider Level: Ethos”
box and (ii) removing Optimism/hope from the “Indicators of Patient Empowerment”/“Patient capacities/states/resources”
box, because patient optimism and hopefulness may be unrealistic as healthcare outcome
goals. The group commented that the importance of patients feeling positive was already
included under “perceived personal control”/“self-efficacy”, and under “well-being”
(Patient outcomes).

Synthesis: components of the emergent conceptual map of patient empowerment

Findings from the two sources were synthesised to produce a graphical representation,
shown in Fig. 2, illustrating emergent model components (underpinning ethos, interventions, moderators,
indicators and outcomes of patient empowerment) and emergent relationships between
components. Table 4 provides examples of how the data sources contributed to identifying components of
the emergent conceptual map.

Underpinning ethos

Underpinning ethos (principles or values) were identified in the qualitative thematic
analysis of published definitions of patient empowerment, and were supported by and
further developed using the qualitative interview data. These were identified at three
levels: the patient level, the healthcare provider level and the healthcare system
level:

1) Patient level ethos: The patient has rights, responsibilities and opportunities
relating to autonomy, self-determination and power within the healthcare relationship,
as well as to optimise healthcare service use.

2) Healthcare provider level ethos: Healthcare providers have responsibilities to
respect patient autonomy and adopt a partnership style within the healthcare relationship.

3) Healthcare system level ethos: The health system seeks to support patients with
long-term conditions to self-manage their condition so they can optimise healthcare
service use and maximise patient health status and well-being.

Empowering interventions

Analysis of published definitions of patient empowerment, and analysis of UK stakeholder
interviews suggested that the level of patient empowerment is modifiable by healthcare
interventions that can be implemented by healthcare providers or healthcare systems
to promote patient empowerment. Examples of healthcare provider-level interventions
include patient centred training interventions 36], shared decision-making 37], motivational interviewing 38], counselling, health coaching, and signposting to support services. Examples of healthcare-system
level interventions include training programmes for clinicians and/or patients, with
or without supporting educational materials 36] e.g., the Expert Patient Programme, the Chronic Disease Self-Management Programme
39], 40], Personalised Care Planning, and patient education programmes.

Moderators of patient empowerment

Several moderator variables that could influence patient empowerment were identified
at the patient, healthcare provider and health system levels. These are variables
that may influence how effectively the empowering interventions influence patient
empowerment. So, for example, in the case of healthcare providers implementing a shared
decision-making intervention, the impact of this on patient empowerment is influenced
by variables such as the healthcare provider’s personal characteristics, training,
personal values and professional goals. At the patient level, the patient’s ability
to undertake patient empowerment activities can be influenced by variables such as
the patient’s context, personal characteristics, values, social support as well as
by the circumstances of their disease (e.g., duration, severity). At the healthcare
system level, the political context, legislation, health priorities and culture were
identified as moderator variables that could influence how patient empowerment initiatives
are implemented by the healthcare system.

Indicators of patient empowerment

Analysis identified that patient empowerment can be conceived of as a patient “state”
and by patient behaviours. Patients can be placed somewhere on a spectrum from lower
to higher levels of the variable “empowerment”. Empowered patients “feel like they have got the ability and are given confidence to be able to manage
their condition” (Healthcare provider – interview). This “state” can be indicated by

(1) Patient capacities, beliefs or resources including self-efficacy, sense of meaning
and coherence about their condition, health literacy, perceived control and feelings
respected by their healthcare providers

(2) Activities or behaviours (things patient do) e.g., participate in shared decision-making by taking an active role and making
informed decisions about their health and healthcare, self-manage their condition
by choosing meaningful and realistic goals and taking steps to achieve those goals,
participate in collective activities such as patient support or advocacy groups, and
search for information about their health condition e.g., on the internet.

Data analysis suggested the (as yet untested) hypotheses that

Hypothesis 1: Empowered patients will report higher levels of self-efficacy, sense
of meaning and coherence about their condition, health literacy, perceived control
and feeling respected by their healthcare providers.

Patient empowerment is, therefore, a variable that could be operationalised in a patient-reported
measure.

Hypothesis 2: Empowered patients, those scoring high on indicators of the variable
“state” patient empowerment, will have better self-reported outcomes e.g., (a) be
better adapted to their condition; (b) have improved quality of life; (c) report higher
levels of well-being and satisfaction with life; (d) achieve some independence relating
to their healthcare.

These outcomes are also variables that could be operationalised in (a) patient-reported
measure(s).

Hypothesis 3: There is a dual reciprocal relationship between patient empowerment
activities or behaviours (things patient do) and patient empowerment capacities, beliefs or resources. For example, patients
who use the internet to collect health information may have improved health literacy
and patients with high levels of health literacy may make more informed decisions
about their health.

Outcomes of patient empowerment

Data suggested that patient empowerment is likely to lead to better patient outcomes
such as better adaptation to their LTC, better quality of life and well-being, and
more independence from healthcare providers and carers. One patient said:

“It’s very important for doctors to empower patients to make sure they’ve got information,
make sure that they’ve got strategies for dealing with their condition so it minimises
the impact of it on their quality of life”. (Patient representative – interview)

Improved clinical outcomes e.g., health status may be more tentative, distal and long-term
outcomes of patient empowerment, as demonstrated by the dashed line between the “patient
outcomes” and “clinical outcomes” and between “indicators of patient empowerment”
and “clinical outcomes” boxes in Fig. 2. Improved health status was described in some areas of the literature as an outcome
of patient empowerment initiatives e.g., self-management training (e.g., Camerini
et al., 2012; Chang 2012; Moattari 2012; see Additional file 2). However, clinical outcomes could themselves have an influence on patient outcomes
and on empowerment, suggesting a fourth hypothesis:

Hypothesis 4: There are dual reciprocal causal relationships between patient empowerment
indicators, patient outcomes and clinical outcomes.

For example, patients whose health is deteriorating as a result of a degenerative
LTC may have reduced independence, quality of life and levels of life satisfaction,
with consequent reduction in feelings of self-efficacy and perceived control over
their health, and may become less able to manage their own health. Some patients may
feel empowered, and report high levels of self-efficacy, knowledge, perceived control
and they may also feel respected by their healthcare providers, yet at the same time,
they may lack functional and critical health literacy. In other words, patients may
feel they know enough about their condition, yet their knowledge may be incorrect,
and so self-management activities they engage in may put at risk achievement of the
positive outcomes that they hope for or expect. However, other patient empowerment
capacities e.g., self-efficacy, when interacting with patient empowerment activities such as participating in shared decision-making
and patient support and advocacy groups, as well as using the internet to collect
health information may be more likely to increase health literacy and contribute to
achieving positive patient outcomes. This is illustrated in Fig. 2.