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Lia Paola Fumagalli

EHMA Annual Conference 2013

Empowering the Patient: antecedents and

consequents from a systematic literature

reviewLia Paola Fumagalli*; Giovanni Radaelli*, Paolo Bertel*, Emanuele Lettieri*,

Cristina Masella*

*Department of Management, Economics and Industrial Engineering

EHMA Annual Conference 2013


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2INTRODUCTION

EU Healthcare strategy

Priorities (Colombo, et al. 2012):

Sustainability

Effectiveness

Patient Empowerment

Cost reduction,

System efficiency,

Better patient-physician

relationships,

Patient satisfaction

Adherence to treatment

Increase of quality in health care

etc

Effects identified in literature(Johnston Roberts 1999; Aw e Lin 2003; OCathain et al., 2005; Chatzimarkakis 2010)


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RESEARCH CONTEXT 3

Goal: evaluation of patient empowerment through eHealth services

Participants: 7 new pilots + 2 additional ongoing pilots

Kind of services: eHealth solutions of self-learning, information exchanging, education and

monitoring system

Population target: chronic patients + general patients / citizens

The PALANTE project is funded from the European Unions ICT Policiy Support Programme as part of the Competitiveness and Inno vation

Framework Programme under GA n 297260

The European Union has set up fundings and research projects in order to study patient

empowerment, health interventions that influence it and the identification/implementation of the

best practices

The EU PALANTE Project

Many initiatives spread and with them the overlapping and confusion

about this concepts and others

The need to clarify the differences and what are the successfully healthcare initiatives inempowering patients arose within a project that is became the context of this research


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ISSUES AND OBJECTIVES 4

PATIENTENGAGEMENT

PATIENT

ENABLEMENT

PATIENT

INVOLVEMENT

PATIENT

ACTIVATION

PATIENT

EMPOWERMENT

A FUZZY CONCEPT

Objectives:

To clarify overlaps between the concepts and disentangle, relationship, similarities and

differences To identify and to study the principal measurment methods related to these concepts taking

into account their contextualization

Outcomes expected:

1) A shared definition of patient empowerment

2) A state-of-art framework of the antecedents and consequences of such contructs

SYSTEMATIC

LITERATURE

REVIEW


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METHODOLOGY 5

Systematic Literature

Review Search Strategy

Source: PubMed

Keywords:

Patient Empowerment

Patient Involvement Patient Engagement

Patient Enablement

Patient Activation

Empowerment Scale

Years: 1990-2012

Language: English

Extraction: 04-09-2012


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STSTEMATIC REVIEW RESULTS 6

KEYWORDS IDENTIFIED DISCARDED SELECTED

PATIENT EMPOWERMENT 434 381 53

PATIENT ACTIVATION 161 132 29

PATIENT ENGAGEMENT 176 165 11

PATIENT INVOLVEMENT 813 733 80

PATIENT ENABLEMENT 60 24 36

EMPOWERMENT SCALE 81 53 28

Duplicates 6

TOTAL 1725 1488 231

Definitions

Occurrence

Without

definitions

With Health

Outcomes Reported

With unclear definition or

relationship with concepts

P. EMPOWERMENT 18 (34%) 35 (66%) 12 (23%) 20 (38%)P. INVOLVEMENT 10 (13%) 70 (87%) 23 (29%) 13 (16%)

P. ACTIVATION 19 (66%) 10 (34%) 16 (55%) 12 (41%)

P. ENGAGEMENT 3 (27%) 8 (73%) 7 (64%) 9 (82%)

P. ENABLEMENT 11 (31%) 25 (69%) 7 (19%) 3 (8%)


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EXAMPLE OF DEFINITIONS 7

PATIENT

ENGAGEMENT

PATIENTENABLEMENT

PATIENT

INVOLVEMENT

PATIENT ACTIVATION

PATIENT EMPOWERMENT

an activated patient is someone who knows how to manage their condition and

maintain functioning and prevent health declines; and they have the skills and

behavioral repertoire to manage their condition, collaborate with their health

providers, maintain their health functioning, and access appropriate and high-quality

care(Hibbard et al., 2004; Hibbard, Mahoney e Stockard, et al. 2005; Hibbard, Mahoney e Stock, et al. 2007; Hibbard,

Collins, et al. 2009; Donald, et al. 2011; Begum, et al. 2011; Hung, et al. 2012; Rademakers, et al. 2012; Tarn, Young

e Craig 2012; Nagykaldi, et al. 2012;)

4 sequential levels/stages of activation: (1) patients believe they have important

roles to play in managing their conditions, (2) they possess the knowledge needed to

manage their health, (3) they take action, using their skills and behavioral repertoire tomaintain their well-being, (4) finally, they stay the course under stress. (Hibbard et al.2007; Skolasky, Mackenzie, et al. 2009; Skolasky, Green, et al. 2011; Salyers, et al. 2012)

Patients ability to understand and cope with their health and illness

(Howie et al. 1998; Wallace, et al. 2004; Walters, et al. 2004; Van Eygen, et al. 2007; Wensing, et al. 2008; Kurosawa,

et al. 2012; Pawlikowska, et al. 2012)

A potential element that helps to promote the improvement of health outcomes and

compliance with treatment and therapy through the emphasis on the aspect of

participation in health care(Haughney, et al. 2007)

In spite this definition, principally enablement is involved in clinical consultation as its

outcome reflecting the gained measure in which patients understand their health

conditions and feel able to cope with them

(Lam, et al. 2010).

It is the active participation in health care including activities such as preparing for appointments,

sharing information and decision-making with health care professionals and compliance to care

plan first agreed

(Hochhalter, et al. 2010)

Engagement is referred to actions that patients have to do in order to gain from health care

services they could access to. A multiplicity of engagement-related behaviors distributed into health

management (e.g.: healthy behaviors and chronic disease self-management behaviors) and health

care management (e.g.: making appointments, fortifying relationship with health care professionals,

searching for the appropriate health care setting if necessary, bringing lists of questions, previous

medications, tests, surgical interventions to health care professionals, staying informed about

potential follow-up treatment options, medications and so on) is reported

(Gruman et al. 2010)

It is the generalization of: public participation (involvement in decision-making processes) and

private participation (involvement of individuals in their own care and treatment) (Jones, et al. 2004)

..All activities that help to enable patients in reaching an active role in choices about own

health care (Geest, et al. 2005) its validity was verifiable through a measure of physiciansbehavior during the decision-making process (Berg, et al. 2001)

Principally, involvement was implied, as enablement, in professional consultations. It includes

4 main elements: information on national standards and possible treatment, quality of service

delivery, patient satisfaction and consultations with health care professionals

(Crossley, Blinkhorn e Cox 2001).

The process of decision-making was one of the main element linked to patient involvement

because of the need to inform patient (about health conditions, potential treatments,uncertainties, risks, possible advantages and benefits that patients could obtained by those

treatments) and to take into account his/her preferences and opinions(Elwyn, et al. 2001; Entwistle e Watt 2006; Smith, et al. 2009; Pham, et al. 2011)

Participation and involvement were related both to an active role during consultation,

involvement was recognize as a relationship with some tasks delegated to patients and it

included three potential level of growing patient power identified in consultation, partnership

and lay control(Thompson 2007)

The ability of people to gain understanding and control over personal, social, economic and political

forces in order to take action to improve their life situations (Segal 1998)

Patients had to be empowered through the acquisition of knowledge, skills, attitudes and self-

awareness essential for controlling and influencing their behaviors in order to improve the quality of

their life (Johnston Roberts 1999)

It found its meanings in its absence in terms of helplessness, paternalism and dependency as well

as more actively, as a feeling of having greater control over ones life (...) (O'Cathain, et al. 2005)

Education was important in order to pass information essential to make decisions and to define own

goals (Redman 2007), while communication within the patient health care professional relationship

based on mutual trust was essential to transfer and increase knowledge, values and power (Aujoulat,d'Hoore e Deccache 2007)

It is considered a measure of patient outcome, in other some authors referred to it also as a process

of behavior change or personal transformation (Aujoulat, d'Hoore e Deccache 2007) and of acquisition of skills

needed to change it (Newton, Scambler e Asimakopoulou 2011; Wang, Thombs e Schmid 2012).

When empowerment was considered a process, it included all means to empower patients like

education, counseling, patient-centered care, and use of community coaches, while as an outcome it

was associated to the self-education, skills on internet, participation in patient organization and

community (McAllister, et al. 2012)



TENTATIVE CONCEPT MAPPING 8

Outcome

PATIENT

ACTIVATION

PATIENT

EMPOWERMENT

PATIENT

ENABLEMENT

PATIENT

ENGAGEMENT

PATIENTINVOLVEMENT(Consequence)

Antecedents

A map of the positioning of different concepts is built on the basis of a new definition

of Patient Empowerment built considering the contributions collected:

the acquisition of knowledge, self-awareness, skills, personal attitudes in

controlling and influencing own behavior for the improvement of the quality of life

and in health decision-making through the improvement of patient-physician

relationship, communication, access to information and health education



DISCUSSION 9

Antecedents

Patient engagement is recurrently adopted for indicating forms of patients participation in health care, for this

reason it is often implied in studies that focus on other concepts

Patient enablement refers to all actions, activities and interventions aimed at developing the knowledge and

the capabilities of the patients needed to cope with their illness and improve the quality of own life.

Consequents

Patient involvement appears to be an effect for patient empowerment and activation. When patients are

empowered, they begin to acquire an active role in health care, increasing the intensity of their participation.

It has also a retroactive effect: its increase (in health care and in the health decision-making process) may

entail the improvement of patient knowledge and skills in self-care influencing positively patient

empowerment and patient activation.

Outocome

Patient empowerment and patient activation apparently are overlapped and their differences

comprehensible observing their fields of application and measurement methods. They imply the need toincrease and develop a set of individual elements (such as knowledge, skills, confidence, personal capabilities

and so on) aimed at improving individual self-management of illness and health conditions. Both aim at

changing patient role from care recipient to active patient that has power and control on own health

problems/conditions in general (in the case of empowerment) and particularly in presence of a specific disease

or specific health programmes (in the case of activation). While patient empowerment is often used for

assessing state of being and psychosocial aspects of ill patients, activation is assessed when the focus is in

capabilities to increase motivation, knowledge and skills owned by patients and their confidence in making

decisions and taking action. within specific health programmes and interventions



CONCLUSION 1 10

Patient involvement, patient engagement andpatient enablement are incomplete inrespect topatient activation andpatient empowerment: they are interpretable as

their antecedents.

Patient empowerment andpatient activation permit to measure outcomes related to

the set of individual capabilities, knowledge, skills, beliefs for the health self-

management.

The choice of what kind of measure (and so the

concept) is suitable to adopt is strongly dependent bymany factors: the purp ose of th e evaluat ion, the

f ield of appl icat ion, the sample of pat ient, the kind

of i l lness and then, the type of h ealth pro gram.



CONCLUSION 2 11

Theoretical implicationFurther investigations are required for the analysis of measurement methods. The

rationale is to understand which is the correct measurement method on the basis ofspecific context of adoption.

Practical implicationThis research found a suitable environment within PALANTE project finalized to

measure and assess patient empowerment and its intensity, resulting from the patientadhesion to different kind of eHealth services

LimitationThe proposed definition of empowerment need to be tested in order to be validated.

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