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Patient Engagement A Consumer-Centered Model to Innovate Healthcare

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Abstract

The increasing life expectations and the people desires for an improved quality of life are more and more putting under pressure Western healthcare systems, which are called to innovate their management approaches and their services delivery in order to become better aligned with the evolving demand of their clients. In this framework, to make consumers effectively engaged in their health care management is crucial for achieving such goals. According to a Consumer Psychology perspective, the book offers a comprehensive theoretical vision on patient engagement to healthcare professionals, policy makers, academics and experts of new technologies. The editors suggest concrete tools and insights to actively engage patients in their own healthcare. Rigorous and readable, this timely manifesto presents a new model of patient engagement in healthcare, emphasizing its value in improving patient care, safety, and outcomes and in leading to healthcare innovation.
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... The caregiver's excessive involvement may increase of patients' loss of control, inability to be self-sufficient and high vulnerability to life events as well as a lack of coping resources (Boutin-Foster, 2005). This is more likely to happen to patients in an emotional "blackout" after the diagnosis (Graffigna et al., 2016), who are more likely to passively accept caregivers' behaviors and possibly shape their understanding of the illness on them. As a consequence, breast cancer patients do not perceive control over their own social environment and may reject oncological treatments or accept them just passively, without shared decision-making; -Poor communication with caregivers: couples find troubles communicating sensitively and openly regarding breast cancer topics for various reasons (Goldsmith and Miller, 2013). ...
... On one side patients may need to be supported exactly in developing attentional focus on their disease, especially when in denial, which deserve to be understood and managed as a spectrum from beneficial coping to maladaptive self-harm with subconscious disavowal (Pene and Kissane, 2019). However, ultimately patient engagement requires the patient to recover a positive life projectuality beyond the disease in order to develop hope and intrinsic motivation (Graffigna et al., 2016). For example, not asking breast cancer patients what their dreams and future goals are may lead patients to perceive themselves as isolated from society with sensations of shame and guilt. ...
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A certain amount of social support is a fundamental human need and is associated with the belief that others have positive views about ourselves. Patients with chronic illness who receive high social support manage their health better. For this reason, social support has been studied extensively in psycho-oncology. In breast cancer specifically, social support is crucial for the illness adjustment by decreasing distress, depression, and lowering the risk of recurrence. However, not all forms of social support that patients may receive from relatives and friends is beneficial. Integrating the social-health psychology perspective and the current directions in psycho-oncology that evidence the influence of self-representations on illness management, in this opinion article we argue that unsupportive social relationships negatively affect one's self-representation, an important issue for health management in breast cancer patients (“Injured Self”).
... Feedback and support from trusted others are a cornerstone for decision support and supportive community in health management, which are critical components of both patient engagement [39] and chronic care [9]. Previous research has demonstrated that trusted others play crucial roles for supporting health outcomes [18] for chronic conditions such as cancer [47], dementia [33], and autism [42,51]. ...
... These findings support prior work's assertion that a patient's engagement in their healthcare can continuously evolve and shift. (29) Inpatient portals must therefore reflect patients' dynamic needs and preferences. Researchers have previously leveraged adaptive and customizable views of tablet-based cancer navigation tools. ...
Article
Inpatient portals could help patients engage in their hospital care, yet several design, usability, and adoption issues prevent this technology from fulfilling its potential. Despite patients having needs that extend beyond the scope of existing inpatient portals, we know less about how to design such portals that support them. To learn about effective designs, we created three mid-fidelity prototypes representing novel approaches for inpatient portal design. Then, we conducted interviews with 21 pediatric and adult inpatients to gather their feedback on these prototypes. Participants shared how the prototypes addressed the following needs: forming active partnerships, navigating relationships and power dynamics with clinicians, understanding complexity of care, contextualizing health information, increasing efficiency of communication, and preventing lost information. We discuss two key implications-supporting patients' agency and dynamic needs throughout their hospital care-for the future of inpatient portal designs.
... Fourth, this study was bound in an American context and the working definition selected may have influenced understanding of patient engagement. This strategy was deemed necessary as the phenomenon of patient engagement is explained differently by researchers in other regions (Graffigna et al., 2013(Graffigna et al., , 2015a. For example, an Italian team of psychologistresearchers define engagement more as a holistic consideration of the patient's health condition, closely linked to psychological development (Graffigna et al., 2015b). ...
Article
Aging adults depend on complex treatment plans to manage chronic conditions, yet little is known about their ability to perform the sophisticated behaviors required of technologically engaged patients. This qualitative descriptive study describes engagement with the plan of care. Forty chronically ill adults participated in this study, which involved an observation of the clinical encounter and an interview. Data were collected and analyzed simultaneously in keeping with principles of qualitative research. Multiple techniques were used to test conclusions and findings were constructed as thematic sentences, including the following: I act in ways that support my health, I manage my health-related information, I make visits with my doctor part of my routine, I participate in treatment planning. Older adults work to achieve self-management to the best of their ability, shunning the use of health information technology (HIT) and demonstrating a preference for provider-created treatment plans.
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User experiences of atypical conditions leading to adverse events have the potential to discover latent user needs and improve usability in design outcomes. This study introduces atypical scenarios as a design intervention to student designers working on healthcare product design projects. These atypical scenarios are framed from real-world clinical experience related to individual projects. 40 participants from a healthcare product design course comprising of 8 teams were involved in this study. Results indicate a positive influence on design and designers in terms of usability in the design process.
Chapter
The objective of this article is to develop a validated mobile app prototype to empower the elderly and caregivers to manage falls that provides personalized and actionable educational materials at the point of care and improves the engagement of the elderly and caregiver in adopting validated fall management practices; To determine the usefulness and suitability of a fall management mobile app to the elderly and caregivers. The method used is a knowledge management approach is used to implement the app based on 2 validated models: Patient Health Engagement Model and Rockwood frailty index. A mixed method evaluation including a cognitive walk through is used to collect end-user feedback from the elderly and caregivers, on the usability, usefulness, and suitability of the app. The app was deemed easy to use, informative and understandable. Potential improvement areas include: larger print; less wordy interfaces; better navigation features; data sharing functionalities; and voice readers. These suggestions will be incorporated in the future. The conclusion of this article is that smartphones have vast potential in providing relevant and creditable fall management information to elderly and caregivers.
Article
Objectives Public and patient engagement (PPE) is increasingly recognized in policy statements as essential to achieving transformation towards patient-centred, value-based, integrated care. Despite extensive research over two decades, important gaps and questions remain around how the efforts invested in engagement drive the changes needed to meet these objectives. Methods We conducted a meta-narrative review of systematic and scoping reviews to understand persistent difficulties and uncertainties in this research domain. Thirty-eight reviews looking at studies of PPE in care, healthcare organizations and systems were appraised. We synthesized the expectations of PPE that prompted each review, the guiding ideas about how PPE comes about, main findings and the questions and gaps they raise. Results: Four storylines are found in reviews: 1. Terminology is inconsistent and concepts are weak; 2. Outcomes of care can be improved 3. Influence on healthcare delivery and design is uncertain; 4. Characteristics of engagement efforts are consequential. Discussion and practice implications: Three assumptions underlie these storylines and appear as barriers to practice and research; alternative approaches based on collaborative governance and theories of change are proposed to understand and support engagement with transformative potential.
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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.
Chapter
The present contribution will describe the origin, development and main characteristics of the patient-centered medicine; the literature on patient-centeredness, in particular in the field of chronic disorders, will be discussed and the importance of this approach underlined; arguments about the importance of patient-centered medicine as theoretical frame founding and supporting the concept of patient engagement will be highlighted, considering that only within this medical epistemology the patient's engagement can find a full and complete expression.
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