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Engagement-sensitive Decision Making: Training Doctors to Sustain Patient Engagement in Medical Consultations


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Questioning about " how to talk with patients " and how to make them engaged in healthcare decision making is currently a policy imperative for Western healthcare systems. Making patients active participants of their care process is increasingly advocated as an ideal model for medical consultations, as it has the potential to deliver better health outcomes and a more efficient use of resources through retaining patients' autonomy and self-determination. However, beyond the evident benefits of patient engagement in healthcare, it should be also considered that doctors – in their daily practice – are commonly challenged by the diversity of situations that arise when they attempt to engage health consumers in clinical decision making. Indeed, consistently engaging patients in daily clinical practice asks doctors to be able to recognize that patients' different clinical statuses and engagement dispositions might require different relational styles. Clearly, different situations require different communication approaches and doctors should be trained to adapt their relational style according to the specificities of such situations. This chapter will be devoted to discussing the opportunities offered by an " engagement-sensitive decision making " in order to orientate doctors' relational skills and decisional style according to patients' needs at each phase of the health engagement process. Insights for medical education and the potential value of new technologies aimed at improving doctors' relational strategies to improve patient engagement will be also provided.
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Serena Barello, Guendalina Graffigna
Engagement-sensitive Decision Making:
Training Doctors to Sustain Patient
Engagement in Medical Consultations
Abstract: Questioning about “how to talk with patients” and how to make them
engaged in healthcare decision making is currently a policy imperative for Western
healthcare systems. Making patients active participants of their care process is increas-
ingly advocated as an ideal model for medical consultations, as it has the potential to
deliver better health outcomes and a more efficient use of resources through retain-
ing patients’ autonomy and self-determination. However, beyond the evident benefits
of patient engagement in healthcare, it should be also considered that doctors – in
their daily practice– are commonly challenged by the diversity of situations that arise
when they attempt to engage health consumers in clinical decision making. Indeed,
consistently engaging patients in daily clinical practice asks doctors to be able to rec-
ognize that patients’ different clinical statuses and engagement dispositions might
require different relational styles. Clearly, different situations require different com-
munication approaches and doctors should be trained to adapt their relational style
according to the specificities of such situations. This chapter will be devoted to dis-
cussing the opportunities offered by an “engagement-sensitive decision making” in
order to orientate doctors’ relational skills and decisional style according to patients’
needs at each phase of the health engagement process. Insights for medical education
and the potential value of new technologies aimed at improving doctors’ relational
strategies to improve patient engagement will be also provided.
Keywords: Patient engagement; shared decision making, patient doctor relation;
medical education; medical communication
1 Introduction
Patients and consumer advocacy groups are expressing increasing interest in real-
izing true partnerships with their clinicians and in being engaged across the care
process, with real-time access to their own medical records, to science-based com-
parative effectiveness information, and to health care delivery environments built to
enhance both safety and personalization of medical care (Barry et al., 2012). Patient
engagement in healthcare, as one of the six major initiatives of the National Priorities
Partnership of the National Quality Forum in the US, is recognized to sustain the cre-
ation of more informed and engaged patients as decision makers in the care process
(Cassel & Guest, 2012).
79 Engagement-Sensitive Decision Making: Training Doctors to Sustain Patient Engagement
Doctors and managers are thus increasingly more committed to actively engag-
ing patients in the whole care process – thus favoring an effective and productive
exchange between the demand and supply of health services. In particular, if we
consider the setting of the clinical consultation, patient engagement finds its best
realization in a two-way active partnership between the patient and his/her doctor in
making decisions about treatments plans.
In this chapter, authors will discuss the usefulness of the People Health Engage-
ment (PHE) model (see Chapter 2) to orientate both clinicians and managers when
they relate with patients. We advocate the need for considering the engagement
phases the patients are passing through in order to successfully communicate with
them and to promote high-quality and satisfying clinical consultations and effective
treatment plans. This chapter also has the aim to show to the reader the relevance
of the PHE model for planning educational interventions for doctors to help them in
practicing communication models which are truly aligned with the patient’s engage-
ment needs and expectations.
2 PHE Model as a Road Map for Guiding Doctors
Engaging Patients in Decision Making
Although great efforts have been made to ensure that patients are informed and
actively engaged in decisions about their treatment options during medical consul-
tations (Kitson et al., 2013), patient passivity in this process has been neglected so
far. The focus has been often on supporting the process if and when a patient is just
engaged, rather than working out how to effectively engage patients and to accom-
pany them in understanding the features and the benefits of shared decision making
with their doctors (Oates et al., 2000; Tinetti & Fried, 2004; Tinetti et al., 2012). It is
as if the value and opportunities of being actively involved in decisions are taken
for granted without the possibility of a voluntary and beneficial patient passivity
in decisional situations. An active role in decision making could be unexpected for
many patients and may even be uncomfortable due to the high cognitive and emo-
tional burden requested. We cannot expect patients to change their desired decisional
behaviors just because they are given an opportunity to actively engage in their health
management. It is curious that the majority of educational interventions were sub-
stantially invested in shifting clinician’s attitudes, despite their not having invested
similar efforts in preparing patients for this new type of patient-doctor relation.
Beyond the demonstrated benefits of patient engagement in healthcare (Hibbard
et al., 2013), we should also consider that doctors – in their daily practice– are com-
monly challenged by the diversity of situations that arise when they attempt to engage
health consumers in clinical decision making. Indeed, engaging patients in daily
clinical practice consistently asks doctors to be able to recognize that patients’ dif-
PHE Model as a Road Map for Guiding Doctors Engaging Patients in Decision Making  80
ferent clinical statuses and engagement dispositions might require different ways of
interaction with them. Clearly, different situations require different communication
approaches and doctors should be trained to adapt their relational style according to
the specificities of such situations (Barello & Graffigna, 2014).
Let us consider that patients’ preferences for being actively involved in medical
consultations may be affected by demographic variables (Kaplan et al., 2005; Belcher
et al., 2006), their socioeconomic status (Fraenkel et al., 2007), their health literacy
level (Mistry et al., 2010), their illness and care experience (Barello et al., 2014), their
diagnosis and global health status (Barello et al., 2014), the type of decision they need
to take (Barello et al., 2014), the amount of knowledge they have acquired about their
condition, their attitude towards engagement, and the ways of interactions and rela-
tional styles they have experienced with their doctors (Fraenkel et al., 2007; Chewn-
ing et al., 2012). Moreover, it is matter of fact that patient’s attitudes towards engage-
ment in their health decision making are likely to change over time as they become
experienced in health management and may change at different stages of their illness
journey (van den Brink-Muinen et al., 2006; Mistry et al., 2010)
So, while patients’ preferences for being engaged in decision making are vari-
able, doctors– at the same time – should be prepared and skilled enough to adapt
their communicational behaviors and decisional style according to the patient’s psy-
chosocial, cultural, and medical condition. However, in contrast with this require-
ment, a growing body of research has showed that doctors often do not take into
account patients’ engagement preferences; rather, they often promote or recommend
specific treatments rather than consider the patients’ expectations of being involved
in their care decision making process (Floer et al., 2004; Fraenkel & McGraw, 2007;
Légaré & Thompson-Leduc, 2014). Thus, research in the medical education field high-
lighted the importance of designing medical training aimed at shaping doctors com-
munication and relational skills according to the principles of patient-centered care
(Bensing, 2000; Makoul, 2001; Stewart, 2003).
Active patient engagement in decision making about care, in which both phy-
sicians and patients exchange information, communicate expectations and prefer-
ences, share values, and make decisions together – more known as shared decision
making– has been widely recommended by clinical guidelines and embraced in aca-
demic literature (Barry & Edgman-Levitan, 2012; Berello & Graffigna, 2014). Also, the
Institute of Medicine (IOM) has recommended including it in medical school curricula
as a core strategy to improve care quality and delivery (Institute of Medicine, 2004).
However, if we observe daily clinical consultation we can easily notice how the picture
is more complex and varied than the one described by a handbook of communication
in medicine. It is a matter of fact that there are a wide variety of roles and communica-
tion preferences for doctors and patients when involved in clinical decision making
tasks. In the light of the PHE model, those preferences are strictly connected to the
patient engagement phase the individuals are in. Whilst research has consistently
shown that doctors underestimate the patients desired level of involvement in the
81 Engagement-Sensitive Decision Making: Training Doctors to Sustain Patient Engagement
care process (Arora, & McHorney, 2000), it is less clear how much patients actually
want to be involved in making decisions about their treatment and what really affects
their preference for being engaged.
As previously shown in this book (see Chapter 3), the PHE model allows us to
map the journey of patient engagement in care and to highlight the specific mindsets
featuring in each phase. Due to the complex interactions existing among the patient’s
cognitive, emotional, and behavioral enactment towards their health – which changes
along the process – patients’ are characterized by specific needs depending on the
phase they are in. As a consequence, a patient-doctor relationship which would be
effective in creating a sustainable partnership between the actors should take into
account such specificities of the engagement process. Let us consider that the doctors
become a privileged interlocutor for the patient from the moment of the diagnosis
and along the whole care process. If doctor and patient fail in building a solid and
trusted relationship, the risk is that the patient could enact dysfunctional behavioral
responses, often ending with care dropout.
3 Promoting Patient Engagement in Shared Decision
Making: It Takes Two
Patient engagement in medical decision-making is described– at least in theory– as
the best philosophy and decisional style, whereby clinicians engage patients as equal
partners to make choices about healthcare, based on clinical evidence and patients
informed preferences and care expectations (Cassel & Guest, 2012; Judson et al., 2013).
Today, both patients and health professionals recognize that patients themselves are
in the best position to evaluate the trade-offs between the pros and cons of alternative
medical courses (Makoul & Clayman, 2006). Moreover, patient expectations about
their role in care choices and treatment decision making have been influenced by
living in a society where patients more and more play the role of active and criti-
cal consumers of health services. Readily available access to health information and
treatment options via new technologies – such as the Internet– has increased over
time (Baker et al., 2003). Moreover, social movements– such as female rights move-
ments– have emphasized the primacy of patient’s autonomy and have actively chal-
lenged the medical class (Holmes-Rovner et al., 1996; Charles et al., 1999). Actively
engaging patients is also recognized as helping meet the demands for accountability,
as clinicians can be more open about decision making (O’Connor et al., 2007).
Furthermore, although evidence about the effects of engaging patients in deci-
sions on clinical outcomes is far from being conclusive, treatment compliance and
self-management of long-term chronic clinical conditions have been shown to be
greater when patients mutually agree decisions with their doctors (Barry & Edgman-
Levitan, 2012). The strongest evidence for patients’ engagement in decision making
Promoting Patient Engagement in Shared Decision Making: It Takes Two  82
also comes from studies on the use of decision support tools. An increasing body of
literature suggests that an enhanced participation of patients in decision making
leads to consistent improvements in patients’ health knowledge and more accurate
perceptions of clinical risks, leading to increased confidence when confronting deci-
sional tasks (Couët et al., 2014). Finally, patient engagement also reduces costs to the
healthcare system and clinicians are less involved in legal arguments (Duncan et al.,
Given these extraordinary premises about the positive implications of patient
engagement in decisions on their health, readers may ask why involving patients
in decision making is so challenging, and so difficult to make a routine practice? The
answer to this legitimate question is probably that beyond the uncountable and dem-
onstrated value of this decisional style, this model poses important challenges to cli-
nicians. Let us examine these challenges in more detail.
In order to be implemented, patient engagement in decision making requires
doctors to help their patients in understanding what the reasonable care options are,
then eliciting, informing, and integrating the patients’ informed preferences as they
relate to the available options. However, according to the PHE model and the speci-
ficities of each phase for the patients’ mindset towards their management, engaging
patients in decision making could be effective only if both patients and doctors are
committed to the process and when the patients’ emotional and cognitive status cor-
responds with the skills required by such an active decisional style. There are patients
that prefer not to be told too much about their illness, and patients’ own preferences
for joining in decision making have been found to be weak, showing even more
decline when they were asked to consider increasingly severe illnesses (Fraenkel &
McGraw 2007). Moreover, the emotional stress and anxiety of severe clinical diagnosis
or hospitalization may further affect patients’ judgment, cognitive functioning, and
emotional availability to participate as skilled and aware partners in shared decision
making (Gaston & Mitchell 2005). Considering all these aspects together is a complex
task for doctors in providing the best communication and relational style for each
patient, when also having to take a critical decision regarding the medical course.
Such a complexity, furthermore, makes patient engagement difficult to be translated
from theory into practice, and the lack of clarity about how to communicate appro-
priately according each patient’s features might contribute to clinicians’ documented
failure to apply a participatory approach in decision making.
In order to be effective in engaging patients in decision making, clinicians
should consider the overlap between the different relational and communicational
approaches and flexibly combine them in order to improve their patient-centered
practice along the unique patients’ illness journey.
83 Engagement-Sensitive Decision Making: Training Doctors to Sustain Patient Engagement
4 Towards an “Engagement-sensitive” Decision
Making Style: the PHE Model as an Orienting
Framework for Doctors Communicational Behaviours
Patient engagement in medical decision making could be a challenging act as inter-
acting with the healthcare system can be understandably unsettling for patients, thus,
uncomfortable feelings may inhibit patients from accomplishing this task (Judson et
al., 2013). We would like to extend this reflection by relating it with the nuanced phe-
nomenon of patient engagement that is a process-like experience resulting from a
conjoint cognitive, emotional and conative enactment of individuals towards their
health (see Chapter 3). A lack of synergy between these dimensions may inhibit the
patients’ ability to engage in the whole process of care, and compromise the decision
making process. During this process, patients go through subsequent phases that are
strictly linked to the disease course and the patients’ elaboration of their illness expe-
rience. According to this process-like view of patient engagement, individuals may
be differently available to be engaged in shared decision making along their illness
journey and might require different decisional styles according to their emotional,
cognitive, and behavioral mindset (see Figure 7.1).
As discussed in Chapter 3, patient engagement is a dynamic and evolutionary
process featuring four experiential positions (blackout, arousal, adhesion, and eudai-
monic project) that involves peculiar ways of interaction, roles, and power dynam-
ics between the patient and the doctor that strongly dependent on the phase of the
process through which the patients is passing. To illustrate medical consultations in
which different decision making styles are appropriate, we will consider three clinical
cases that exemplify the situations of patients’ in different states of the PHE model
and their preferred role in decision making. Let us consider that in the early post-diag-
Figure 7.1: Engagement-sensitive decision making framework. Guidelines for doctors.
Towards an “Engagement-sensitive” Decision Making Style: the PHE Model as an Orienting  84
nosis phases– namely the phases of blackout and arousal of the PHE model– many
patients may be not ready to make decisions due to negative emotions and/or fatigued
cognitive functioning (see Figure 7.2).
In these phases paternalism should be the preferred patient-doctor relational
style. In line with the patients’ expectations, doctors are expected to perform infor-
mation management, assess options, and make treatment decisions for patients by
informing them and augmenting their health literacy and basic behavioral skills for
disease management.
Regarding the patients’ role in decision making, this phase of the patient health
engagement process should require a mere information exchange: patients, in this
way, can acquire through the dialogue with clinicians basic knowledge and skills to
start navigating the healthcare systems without the responsibility of taking decisions
about care plans.
In a more advanced phase of the process – the “adhesion” phase– patients are
more available to be involved in decisions regarding their treatments, but still need to
be encouraged in taking part and require being empowered in regard to their ability
to co-produce their health (see Figure 7.3).
Figure 7.2: Decision making style with a patient in the blackout phase.
85 Engagement-sensitive Decision Making: Training Doctors to Sustain Patient Engagement
In this phase, a consumerist style of decision making seems to be the best
approach to patient doctor interaction. Doctors – considered as technical experts
that provide information and facilitate the patients’ decisions – are here expected to
give information to patients who then make their own decisions. In this phase, delib-
eration is the expected role for patients, who are now able to face formal discussion
about treatment options, care expectations, symptom management and monitoring,
and also share with doctors’ responsibilities about care plans.
A completely shared decision making process arrives when the patients are in the
phase of “eudaimonic project”, and have finally acquired the knowledge, skills, and
emotional balance necessary to effectively engage in their healthcare management,
thus devising renewed wellness plans for their future life (see Figure 7.4).
Doctors are here supposed to share decisional actions with the patients which
should be helped ‘on demand’ to construct, check, and prioritize their preferences,
thus encouraging reflection and the co-creation of decisions. In this phase patients
are able to take decisional control due to the fact that they feel they have power over
the final selection of treatments, and the ability to take most of the responsibility for
care plans.
Figure 7.3: Decision making style with a patient in the adhesion phase.
Towards an “Engagement-sensitive” Decision Making Style: the PHE Model as an Orienting  86
As demonstrated by the the clinical cases provided, the PHE model might allow
for the highlighting of specificities in the relational dynamics that are feature of the
patient-doctor encounters along the care process, and may help doctors in orient-
ing their communicational behavior. This process-like modelling of patient engage-
ment potentially leads to the reshaping of medical encounters by posing the basis for
a true and sustainable partnership between patients and doctors along the natural
course of the patient’s illness experience. In this perspective, while the process of
patient engagement evolves, the patients’ expectation towards the relational style
of their doctors changes too, thus implying a continuous realignment of roles and
power dynamics (Rodriguez-Osorio & Dominguez-Cherit, 2008; Barello et al., 2014).
As shown, the last position of the engagement process (i.e., eudaimonic project) cul-
minates in the patients’ capacity to gain a positive approach to health management
and to adopt a more active role in medical decision making. In this position he/she
perceives him/herself as a person (not only as a patient) and are able to construct
an effective partnership with the clinician. This can be considered the actual shared
decision making zone, where the clinician may consider the patient a real partner in
decisional tasks.
Figure 7.4: Decision making style with a patient in the eudaimonic project phase.
87 Engagement-sensitive Decision Making: Training Doctors to Sustain Patient Engagement
Moreover, this broader conceptualization of patients’ engagement is suggestive
of richer guidelines to orientate patient-centered medical communication skills and
power dynamics in the patient-physician encounter. A real “patient-centered com-
munication” includes the sharing of information, but it also focuses on fostering rela-
tionships, managing uncertainty, favoring the patient’s awareness, acknowledging
and responding to the patient’s emotions, and enabling self-management practice.
The clinician who would embrace this perspective will align their relational style
and communicational behaviors with the patient’s agenda and engagement dispo-
sition well enough to encourage patients to get involved in active and shared deci-
sion making at the right moment. Thus, we suggest that clinical consultation which
would be effective in fostering patients’ engagement should not be reduced to the
mere enhancement of patients’ overall health knowledge. Rather, engaging patients
in medical consultations and decision making should also include specific communi-
cational actions aimed at scaffolding patients and passing on those behavioral skills
necessary to accommodate different models of decisional styles. Moreover, we suggest
that patients’ should be educated to participate in decision making and cannot be
pushed to be actively involved in decisions regarding their health if they are passing
through an engagement phase that is not suitable to that decisional style.
Based on this discussion, we suggest planning education for both patients and
clinicians in order to promote a shared enactment of participative decision-making
along the care process. According to this framework and in line with what discussed
in Chapter 4, new technologies (i.e. electronic medical records, web portals, telemon-
itoring…) may be particularly useful in improving patients understanding of their
medical condition. Consumers have access to a variety of sources for such informa-
tion, including physicians, friends and family, printed materials such as pamphlets
and journal articles, community centers, and the Internet. But the innovation in a
participatory decision-making is the use of interactive technology to inform patients
and better attune treatments to their needs. This method of informing patients may
be applied to a variety of medical conditions, as well as general preventive medicine.
Since this approach was first developed in the early 1980s, the use of technology
has been increasingly seen as an effective means of helping patients make informed
choices about their care. Interactive presentations can inform patients of treatment
options, promote health, and teach self-management skills. On this basis, we encour-
age healthcare innovation through the adoption of eHealth tools (i.e. online services,
mobile apps, or other health resources available on computers or smart phones) as
models of innovative ways that providers and patients could use health IT to select
the most appropriate decisional style and treatment options for the individual
patient. Health IT can communicate the individual’s choice to other providers (such
as specialists, pharmacists, and facilities where the individual receives care) so that
additional care sources recognize their preferences. This can avoid unnecessary or
unwanted tests and treatments.
Engaging Patients in Decision Making “from Theory into Practice”: Agenda Setting  88
5 Engaging Patients in Decision Making “from
Theory into Practice”: Agenda Setting for Medical
According to the insights provided by the PHE model, as far as it concerns the patient-
doctor relationship, we advocate the importance of preparing patients for a shared
decision making clinical encounter, partly by changing attitudes towards engage-
ment, and partly by recognizing the appropriateness of this decisional style based
on the patients’ mindset. We also suggest that interventions should be delivered in
two stages: firstly sensitizing patients, followed by to the enabling of shared decision
making (see Figure 7.5). Patients should attend a sensitizing intervention that clearly
explains to them the meaning of taking a shared decision and the effective ways to
do this. Once the patient has made an informed decision to be involved and has a
clear understanding of the benefits related to a shared decisional style, the focus
moves on to the patients’ enablement of shared decision making. This might be done
through helping patients take part in a two-person setting of health decision making,
by offering appropriate decision support tools and question prompt lists. Importantly,
the interventions need to be promoted from within the organization and the patient
should perceive that both the healthcare organization and the clinicians consider
patient engagement as a core value of their practice.
Many clinicians in their routine clinical practice may dismiss the above recom-
mendations as impractical, given the considerable time needed to complete the com-
munication processes outlined above. The diverse tasks of physicians involved in
chronic patient care might limit their capacity to conduct thorough prognostication,
communication, and decision making for different patient engagement preferences
Figure 7.5: Doctors’ communication priorities to engage patients in shared decision making.
89 Engagement-Sensitive Decision Making: Training Doctors to Sustain Patient Engagement
and expectations. Yet, the unique role of clinicians demands that they assume the
primary responsibility for “diagnosing” the best relational style for each patient along
the care process, thus promoting what we called an “engagement-sensitive decisional
style”. As such, the routine conduct of these activities must be efficiently integrated
into routine care. The more clinicians perform patient engagement – in the ways and
time suggested by the PHE model – the better they will be at making it a natural part
of their routine care practices.
The promotion of patient engagement appears likely to continue both in clini-
cal practice and policy making initiatives. Doctors appear receptive to this practice,
and willing to acquire the relevant skills to enact it. However, strategies for the wider
implementation of patient engagement could address how consultations are sched-
uled in chronic patient care, and raise consumers’ expectations or desires for involve-
ment (or un-involvement) by assessing their level of engagement according to the
PHE model.
6 Conclusions: Direction for the Future
Consistently engaging patients in their health care across daily clinical practice
requires practitioners to be able to recognize that different clinical situations require
different approaches and to be skilled enough to adapt and, where needed, inte-
grate diverse methods and styles of patient-doctor communication. The biological
reality of chronic diseases makes communication and decision particularly difficult
since these clinical conditions are often characterized by unpredictable periods of
acute illness, followed by improvement in symptoms and function. Attending to this
uncertainty involves both acknowledging the cognitive aspect of the conversation
(e.g., explaining to patients and families the unpredictable nature of illness and
recognizing the inability of modern medicine to accurately predict life expectancy),
while simultaneously addressing the complex emotions associated with the “roller
coaster” of chronic conditions (e.g., fear, anxiety, and uncertainty). Second, the
chronic nature and unpredictability of clinical courses require that communication
be viewed as an evolving series of dynamic conversations that take into account the
overall health engagement of the patient, and the shifting balance between benefits
and burdens of any treatment or test that is either currently being used or that is
being considered. Patients’ preferences towards engagement in their health deci-
sions may change over time as their illness progresses and their health engagement
experience changes, which further highlights the relevance of an ongoing patient-
doctor dialogue and of the continuous attunement of doctors’ communicational
behaviors. Considering the specificities of each phase of the PHE model, a patient-
doctor relation merely oriented toward shared decision making alone could be inap-
propriate. Leading patients in being actively involved in decisions regarding their
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... Healthcare practitioners also require education on how they can support patients to actively engage and how to communicate errors to each other appropriately and respectfully. Patient engagement is affected by healthcare practitioners' knowledge, skills, and attitudes toward patient engagement and the care environment [18,19]. ...
... Numerous studies have been conducted on the effect of patient engagement in improving patient safety. In the majority of studies, research evidence was produced and translated, but the present study tried to implement the translated evidence [4,6,8,11,13,18,20,22]. Also, the aim of most previous studies was to determine the factors affecting patient engagement and patient safety [4][5][6][8][9][10][11][12][13][14][15][16][17][18]. ...
... In the majority of studies, research evidence was produced and translated, but the present study tried to implement the translated evidence [4,6,8,11,13,18,20,22]. Also, the aim of most previous studies was to determine the factors affecting patient engagement and patient safety [4][5][6][8][9][10][11][12][13][14][15][16][17][18]. On the other hand, qualitative studies were conducted to explain the experiences of patients and clinicians regarding patient engagement in patient safety [3,8,15,31]. ...
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Background Patient engagement in patient safety is aimed at increasing the awareness and participation of patients in error-prevention strategies. The aim of this project was to improve the patient safety with the patient engagement within the local context of a maternity hospital by implementing best practice. Methods A clinical audit was conducted using the JBI Practical Application of Clinical Evidence System tool. The current project was conducted in surgical ward of Shahid-Beheshti maternity hospital, Iran. The sample size was 46 patients and 46 healthcare practitioners for both the baseline and follow-up. In phase 1, four audit criteria were used and a baseline audit was conducted for this project. In phase 2, barriers to compliance were identified, and strategies were adopted to promote best practice. In phase 3, a follow-up audit was conducted. Results The results showed varying levels of compliance with the four criteria used in this project. The criterion 1, which was related to training of healthcare practitioners on how they can support patients, has the highest compliance at 87% in baseline and follow up data collection. Furthermore, compared with the baseline data (criterion 2 = 52%; criterion 3 = 37%; criterion 4 = 61%), compliance with criteria 2, 3, and 4 notably improved at 85, 76, and 92%, respectively. Conclusions The present project successfully implements patient engagement in Iran and reveals varying results on compliance and the increasing knowledge of healthcare practitioners and patients on evidence-based patient engagement in order to improve the patient safety. The used strategies can facilitate implementation of evidence based procedures in clinical practice.
... The last decades, in fact, have witnessed a profound turning of care models towards a growing and increasing valorisation of the role of the individual, who is seen as an active and "expert" subject within the clinical care process wailing to co-create his/her own health (21)(22)(23)(24)(25). Furthermore, the care system finds itself involved with people that express their desire to have a more active role in all the phases of their healthcare journey and feel their illness experience valued (26)(27)(28)(29)(30)(31)(32)(33). People wish to be more involved in the decision-making process related to their healthcare, they wish to be aware and thoroughly know all the possible treatment options, and the relative pros and cons (34)(35)(36)(37)(38)(39)(40). Even if researchers and clinicians agree with the ethical and pragmatic priority of Patient Engagement promotion, to this day there is no consensus regarding the definition of this concept and the more appropriate strategies and instruments to reach this objective. ...
... In relation to the informal/family caregivers, there is a need for: 1) resources that guarantee efficacy, sustainability and continuity of the interventions in the long run; 2) emotional support and counselling; 3) caregiver education and improvement of health literacy. To achieve these goals recommended strategies are: Therapeutic Education (34) and Peer Education (79,80) and Psychology Counselling (81) to increase motivation and self-awareness of the informal caregivers. 4) Models, processes, and practices of the social and healthcare organization should be reconfigured in order to truly achieve the goal of Engagement. ...
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Patient engagement is receiving a growing attention in the healthcare context. However, although worldwide healthcare stakeholders agree that patient engagement is a priority for quality and effective care, no shared recommendations on how to promote patient engagement are currently available. Based on these premises, a Consensus Conference (CC) was promoted to address four main issues: What is the definition of Patient Engagement? How measuring Patient Engagement? What are the most recommended methodologies and the tools to promote Patient Engagement? What is the role of new technologies in promoting of Patient Engagement? The consensus was obtained through an iterative process that began with a systematic synthesis of the available literature in each domain followed by plenary expert discussions. This CC - including the systematic analysis of internationals scientific evidences (2749 sources across the major international scientific databases) together with experiences of a multi-disciplinary consortium of investigators and key stakeholders - attempted to provide the first evidence-based Expert Consensus Statement for the promotion of Patient Engagement in chronic care. These recommendations should be envisaged as inspirational principles to promote a real eco-system of engagement and might orient health services research and interventions.
... Patients awareness and conscious participation to the decisions on treatment procedures is fundamental, not only in order to guarantee their informed consent, but to provide a protected and scaffolding relational space where patients and healthcare professional may feel real partners of a common health endeavor. In other term, to sustain patients' engagement in shared decision making and in the care relationship is a crucial predictor of the quality of patients' psychological and medical experience (32)(33)(34)(35)(36). ...
... Furthermore, the adoption of validated measurement to assess patient engagement is a way to insure the best personalization of educational initiatives and relational acts. These interventions should be personalized according to the specific position of the patients along their engagement journey (8,36,45). Not all patients, and not in all stage of their healthcare experience, indeed, are able and willing to really assume a proactive position in their healthcare management. ...
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In the last decade, the humanization of medicine has contributed to an important shift in medical paradigms (from a doctor-centered to a patient-centered approach to care). This paradigm shift promoted a greater acknowledgement of patient engagement as a crucial asset for healthcare due to its benefits on both clinical outcomes and healthcare sustainability. Particularly, patient engagement should be considered a vital parameter for the healthcare system as well as it is a marker of the patients’ ability to be resilient to the illness experience and thus to be an effective manager of his/her own health after the diagnosis. For this reason, measuring and promoting patient engagement both in chronic and acute care is today a priority for healthcare systems all over the world. In this contribution, the authors propose the Patient Health Engagement (PHE) model and the PHE scale as scientific and reliable tools to orient clinical actions and organizational strategies based on the patient engagement score. Particularly, this work discusses the implication of the adoption of these scientific tools in the enhanced recovery after surgery (ERAS) experience and their potentialities for healthcare professionals working in thoracic surgery settings
... Patient engagement pertains to patients being active in decisions and actions related to their own health and preferences toward enhancing their satisfaction with the health care system and improving health care outcomes. In health care decision-making, patient engagement is described as the approach whereby health care staff members engage with patients as equal partners to make healthy choices based on the best health care evidence available and patients' informed preferences and care expectations [24]. The experience of engagement is a key qualifier of the exchanges between patients and their health care providers [25]. ...
... Recent decades, indeed, have witnessed a profound shift of care models towards an increasing focus on the role of the patient, who is seen as an active and "expert" subject within the clinical care process who is willing to co-manage his/her own health [17][18][19][20][21]. Furthermore, patients and their family members express the desire to acquire a more active role in all the phases of their healthcare journey [22][23][24][25][26][27][28][29]. Patients want to be more involved in the decision-making process related to their health care; they want to be thoroughly aware about all the possible treatment options, and the relative pros and cons [30][31][32][33][34][35][36]. Even if researchers and clinicians agree with the ethical and pragmatic priority of patient engagement's promotion, at present there is no consensus regarding the definition of patient engagement and the more recommended strategies to reach it. ...
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Patient engagement has been recognized as a key priority in chronic care. However, scholars agree that guidelines are needed to ensure effective patient engagement strategies. To this end, a Consensus Conference process was promoted with the following methodological steps: (1) extensive literature review about patient engagement initiatives in chronic care; (2) a stakeholders survey to collect best practices and (3) workshops with experts. On the basis of the information collected, a consensus statement was drafted, revised, and finalized by a panel of select renowned experts. These experts agreed in defining engagement as an eco-systemic concept involving multiple actors all of which contribute to influence patients’ willingness and ability to engage in chronic care. Moreover, experts recommended, whenever possible, to adopt standardized instruments to assess engagement levels and related unmet needs. Then, experts strongly advised appropriate trainings for healthcare professionals about patient engagement strategies. Furthermore, the importance of promoting healthcare professionals’ wellbeing has been advocated. Family caregivers, as well as patients’ organizations - should be trained and engaged to increase the effectiveness of interventions dedicated to patients. Finally, experts agreed that digital technologies should be considered as a crucial enhancer for patient engagement in chronic care.
... Indeed, consistently making sensitive decisions in daily clinical practice asks doctors to be able to recognize their often implicit perspectives on health management, their level of engagement on patients' clinical statuses and their relational styles. Consistently engaging patients in daily clinical practice and respecting the so often risking and stressful situations within medical organizations ask doctors to be able to recognize their perspectives and assumptions about their professional identity, considered usually as one of the strongest in terms of social recognition and salary (Barello, Graffigna, 2016). How are they supported when they feel overwhelmed, isolated or need help from their colleagues? ...
... This result suggests interesting further investigation on how the role of healthcare professionals and their attitudes to engagement are crucial assets with which to achieve activation. [70][71][72][73][74][75]68,67] Attitudes not given for granted since the concept of patient activation and engagement put into question the need of revisiting traditional power dynamics in the doctor-patients relationships [76,77]. ...
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Background Increasing bodies of scientific research today examines the factors and interventions affecting patients’ ability to self-manage and adhere to treatment. Patient activation is considered the most reliable indicator of patients’ ability to manage health autonomously. Only a few studies have tried to assess the role of psychosocial factors in promoting patient activation. A more systematic modeling of the psychosocial factors explaining the variance of patient activation is needed. Objective To test the hypothesized effect of patient activation on medication adherence; to test the the hypothesized effects of positive emotions and of the quality of the patient/doctor relationship on patient activation; and to test the hypothesized mediating effect of Patient Health Engagement (PHE-model) in this pathway. Material and methods This cross-sectional study involved 352 Italian-speaking adult chronic patients. The survey included measures of i) patient activation (Patient Activation Measure 13 –short form); ii) Patient Health Engagement model (Patient Health Engagement Scale); iii) patient adherence (4 item-Morinsky Medication Adherence Scale); iv) the quality of the patients’ emotional feelings (Manikin Self Assessment Scale); v) the quality of the patient/doctor relationship (Health Care Climate Questionnaire). Structural equation modeling was used to test the hypotheses proposed. Results According to the theoretical model we hypothesized, research results confirmed that patients’ activation significantly affects their reported medication adherence. Moreover, psychosocial factors, such as the patients’ quality of the emotional feelings and the quality of the patient/doctor relationship were demonstrated to be factors affecting the level of patient activation. Finally, the mediation effect of the Patient Health Engagement model was confirmed by the analysis. Conclusions Consistently with the results of previous studies, these findings demonstrate that the Patient Health Engagement Model is a critical factor in enhancing the quality of care. The Patient Health Engagement Model might acts as a mechanism to increase patient activation and adherence.
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Cardiac patients show alarming levels of nonadherence to medications. It is important to consider also patient activation levels. Furthermore, the partner could have a supporting role in these processes. The aim of this study was to investigate the mediating role of patient health self-efficacy (HSE) in the link between dyadic coping (DC) and two self-management outcomes (i.e., medication adherence and patient activation) across the first six months of cardiac disease. One hundred couples completed two self-report questionnaires during the hospitalization for cardiac disease and six months after discharge. A longitudinal and dyadic research design was adopted. Cross-sectional analyses at T0 revealed that patient-provided and perceived positive DC and common DC are positively associated with HSE, which in turn is positively associated with medication adherence. HSE mediated the association between patient positive and common DC styles, with the only exception of Patient-provided positive DC, and patient activation. Conversely, patient-provided and perceived negative DC are negatively associated with HSE, which in turns is positively associated with medication adherence and patient activation. Prospective analyses showed that only patient-perceived negative DC at discharge is negatively associated with HSE at T1, which in turns is positively associated with patient activation over time. These results suggest to consider patient perceived and provided DC as antecedents of self-management outcomes via patient HSE. Furthermore, our results recommend to pay particular attention to negative DC, whose negative consequences are manifested also over time, planning interventions targeting partners’ awareness of their own DC style.
Increasing evidence has demonstrated that patients' involvement promotes better health care outcomes and cost-effectiveness of services. However, limited literature is available about the experience of living donor kidney transplantation and best practices to promote patients and donors' engagement. Aim of the present chapter is to review the literature about patient engagement in the context of chronic kidney disease, and to introduce an innovative protocol developed to promote potential donors and recipients' participation and adherence to care at the Niguarda Ca' Granda Hospital in Milan (Italy). Results are critical to reflect on the identification of best practices for patients' engagement in the context of chronic kidney disease. Through a better understanding of the emotional and affective dynamics and the relational implications that may influence the elaboration of the information given by health care providers, it will be possible to develop evidence-informed interventions.
As patient engagement cannot be achieved without health professionals co-operation and agreement, attention to the clinicians’ views and attitudes about patient engagement is essential in order to deepen potential enablers and barriers for its implementation. This qualitative study aimed to identify health professionals’ attitudes towards patient engagement and the perceived hindrances and facilitators to the implementation of the patient engagement strategies in their routine practice with a particular focus of health information technologies for patient engagement. It identifies the dimensions underlying patient engagement realization, namely clinicians’ “Meanings and attitudes towards patient engagement”, “practical experience of patient engagement”, and “being a health professional in the era of patient engagement”, as well as highlights the fashion in which these dimensions operate will either activate or inhibit patient engagement innovation. Finally, the study highlighted the great potential of health technologies to support patient engagement if they are enablers of the patient-clinician relationship and not replace it.
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Making patients protagonists of decisions about their care is a primacy in the 21st century medical ethics. Precisely, to favor shared treatment decisions potentially enables patients' autonomy and self-determination, and protects patients' rights to make decisions about their own future care. To fully accomplish this goal, medicine should take into account the complexity of the healthcare decision making processes: patients may experience dilemmas when having to take decisions that not only concern their patient role/identity but also involve the psychosocial impact of treatments on their overall life quality. A deeper understanding of the patients' expected role in the decision making process across their illness journey may favor the optimal implementation of this practice into the day-today medical agenda. In this paper, authors discuss the value of assuming the Patient Health Engagement Model to sustain successful pathways for effective medical decision making throughout the patient's illness course. This model and its relational implication for the clinical encounter might be the base for an innovative " patient-doctor relational agenda " able to sustain an " engagement-sensitive " medical decision making.
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The last decades' changes in the epidemiological trends of chronic disease – also due to the ageing population – and the increased length and quality of life among the majority of Western population have introduced important changes in the organization and management of the healthcare systems. Consequently, health systems throughout the world are searching for new and effective ways to make their services more responsive to new patients and the public's health needs and demands. The idea of patient engagement – borrowed from the marketing conceptualization of consumer engagement – moves from the assumption that making patients/clients co-producers of their health can enhance their satisfaction with the healthcare system as well as their responsibility in both care and prevention by improving clinical outcomes and reducing health delivery costs. To make people aware of their health services options by supporting them in the decision-making process and to engage them in enacting preventive and healthy behaviors is vital for achieving successful health outcomes and preventing waste of resources. In this chapter, we outline a model (PHE model) that explains the patients' subjective experience with their health management process and the levers that may enact the passage from one phase of the process to the other. Based on this conceptual model of patient engagement will be proposed a tool kit of priority actions that may sustain the patient in its process of engagement.
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In May 1999, 21 leaders and representatives from major medical education and professional organizations attended an invitational conference jointly sponsored by the Bayer Institute for Health Care Communication and the Fetzer INSTITUTE: The participants focused on delineating a coherent set of essential elements in physician-patient communication to: (1) facilitate the development, implementation, and evaluation of communication-oriented curricula in medical education and (2) inform the development of specific standards in this domain. Since the group included architects and representatives of five currently used models of doctor-patient communication, participants agreed that the goals might best be achieved through review and synthesis of the models. Presentations about the five models encompassed their research base, overarching views of the medical encounter, and current applications. All attendees participated in discussion of the models and common elements. Written proceedings generated during the conference were posted on an electronic listserv for review and comment by the entire group. A three-person writing committee synthesized suggestions, resolved questions, and posted a succession of drafts on a listserv. The current document was circulated to the entire group for final approval before it was submitted for publication. The group identified seven essential sets of communication tasks: (1) build the doctor-patient relationship; (2) open the discussion; (3) gather information; (4) understand the patient's perspective; (5) share information; (6) reach agreement on problems and plans; and (7) provide closure. These broadly supported elements provide a useful framework for communication-oriented curricula and standards.
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Background: The aim of this study was to develop and evaluate a brief quantitative five-language measure of involvement and satisfaction in clinical decision-making (CDIS) - with versions for patients (CDIS-P) and staff (CDIS-S) - for use in mental health services. Methods: An English CDIS was developed by reviewing existing measures, focus groups, semistructured interviews and piloting. Translations into Danish, German, Hungarian and Italian followed the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Task Force principles of good practice for translation and cultural adaptation. Psychometricevaluation involved testing the measure in secondary mental health services in Aalborg, Debrecen, London, Naples, Ulm and Zurich. Results: After appraising 14 measures, the Control Preference Scale and Satisfaction With Decision-making English-language scales were modified and evaluated in interviews (n = 9), focus groups (n = 22) and piloting (n = 16). Translations were validated through focus groups (n = 38) and piloting (n = 61). A total of 443 service users and 403 paired staff completed CDIS. The Satisfaction sub-scale had internal consistency of 0.89 (0.86-0.89 after item-level deletion) for staff and 0.90 (0.87-0.90) for service users, both continuous and categorical (utility) versions were associated with symptomatology and both staff-rated and service userrated therapeutic alliance (showing convergent validity), and not with social disability (showing divergent validity), and satisfaction predicted staff-rated (OR 2.43, 95%CI 1.54- 3.83 continuous, OR 5.77, 95%CI 1.90-17.53 utility) and service user-rated (OR 2.21, 95%CI 1.51-3.23 continuous, OR 3.13, 95%CI 1.10-8.94 utility) decision implementation two months later. The Involvement sub-scale had appropriate distribution and no floor or ceiling effects, was associated with stage of recovery, functioning and quality of life (staff only) (showing convergent validity), and not with symptomatology or social disability (showing divergent validity), and staff-rated passive involvement by the service user predicted implementation (OR 3.55, 95%CI 1.53-8.24). Relationships remained after adjusting for clustering by staff. Conclusions: CDIS demonstrates adequate internal consistency, no evidence of item redundancy, appropriate distribution, and face, content, convergent, divergent and predictive validity. It can be recommended for research and clinical use. CDIS-P and CDIS-S in all 3 five languages can be downloaded at
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Objective As shared decision makes increasing headway in healthcare policy, it is under more scrutiny. We sought to identify and dispel the most prevalent myths about shared decision making. Methods In 20 years in the shared decision making field the author has repeatedly heardmention of the same barriers to scaling up shared decision making across the healthcare spectrum. We conducted a selective literature reviewrelating to shared decision making to further investigate these commonly perceived barriers and to seek evidence supporting their existence or not. Results Beliefs about barriers to scaling up shared decision making represent a wide range of historical, cultural, financial and scientific concerns. We found little evidence to support twelve of the most common beliefs about barriers to scaling up shared decision making, and indeed found evidence to the contrary. Conclusion Our selective review of the literature suggests that twelve of the most commonly perceived barriers to scaling up shared decision making across the healthcare spectrum should be termed myths as they can be dispelled by evidence. Practice Implications Our review confirms that the current debate about shared decision making must not deter policy makers and clinicians from pursuing its scaling up across the healthcare continuum.
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Patient engagement (PE) is increasingly regarded as a key factor in the improvement of health behaviors and outcomes in the management of chronic disease, such as type 2 diabetes. This article explores (1) the reasons for disengagement of diabetic patients and their unique subjective attitudes from their experience and (2) the elements that may hinder PE in health management. 29 Type-2 uncontrolled diabetes patients were asked to keep a one-week diary related to their experience of disease management, according to the narrative inquiry qualitative approach. They were interviewed to ascertain reasons for PE. The elicited narratives were subjected to interpretive content analysis. The findings suggest that patients give meaning to their diabetes and its management through a complex frame of subjective experiential dimensions (cognitive/thinking, behavioral/conative and emotional/feeling), which have an impact on the spheres of daily life that are considered to be crucial in the management of diabetes (diet, physical activity, therapy, doctor-patient relationship) for each patient. These results suggest that PE develops along a continuum featuring four subsequent phases (blackout, arousal, adhesion, eudaimonic project). Several unmet needs related to the different phases of the PE continuum were discovered and illuminated possible types of support. Our findings appear to confirm some features of PE detected by previous research, such as a behavioral component. We were also able to shed light on the synergic roles played by other subjective dimensions of patient experience (the cognitive/thinking and the emotional/feeling components) in orienting PE towards the care process. The article suggests a possible framework to deeply understand the PE process useful to orient really attuned actions to support it. These results suggest the importance of developing patient engagement assessment tools that are more firmly grounded in the individual patient experience.
Background Training health professionals in shared decision making (SDM) may influence their patients' intention to engage in SDM.Objective To assess the impact of DECISION+2, a SDM training programme for family physicians about the use of antibiotics to treat acute respiratory infections (ARIs), on their patients' intention to engage in SDM in future consultations.DesignSecondary analysis of a multicentre clustered randomized trial.Setting and participantsThree hundred and fifty-nine patients consulting family physicians about an ARI in nine family practice teaching units (FPTUs).InterventionDECISION+2 (two-hour online tutorial, two-hour workshop, and decision support tools) was offered in the experimental group (five FPTUs, 162 physicians, 181 patients). Usual care was provided in the control group (four FPTUs, 108 physicians, 178 patients).Outcome measureChange in patients' intention scores (range −3 to +3) between pre- and post-consultation.ResultsThe mean ± SD [median] scores of intention to engage in SDM were high in both study groups before consultation (DECISION+2 group: 1.4 ± 1.0 [1.7]; control group: 1.5 ± 1.1 [1.7]) and increased in both groups after consultation (DECISION+2 group: 2.1 ± 1.1 [2.7]; control group: 1.9 ± 1.2 [2.3]). Change of intention, classified as either increased, stable or decreased, was not statistically associated with the exposure to the DECISION+2 programme after adjusting for the cluster design (proportional odds ratio = 1.5; 95% confidence interval = 0.8–3.0).ConclusionDECISION+2 had no significant impact on patients' intention to engage in SDM for choosing to use antibiotics or not to treat an ARI in future consultations. Patient-targeted interventions may be necessary to achieve this purpose.