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Patient-centered care is a way of thinking and doing things that considers patients partners in the development of a healthcare plan designed to meet their specific needs. It involves knowledge of the individual as a person and integrates that knowledge into their plan of care. Patient-centered care is central to the discussion of healthcare at the insurance and hospital-level. The quality of the service is evaluated more deeply from all the healthcare components, including insurance payments. It is the start of a new client- and patient-centered healthcare, which is based on a profound respect for patients and the obligation to care for them in partnership with them. Healthcare has been lacking a strategy to teach patients how to take care of themselves as much as they possibly can. In countries with socialized healthcare, patients don’t go to the emergency room unless it is necessary; they have a physician on call instead. This affords more personalized care and avoids patients getting lost in the hospital system. This book advocates the critical role of patients in the health system and the need to encourage healthy living. We need to educate patients on how to be more self-aware, giving them the tools to better understand what they need to do to achieve healthy lifestyles, and the protocols and policies to sustain a better life. Prevention has always been the pinnacle of medical care. It’s time to highlight and share this approach with patients and involve them as active participants in their own healthcare. This is the method on which to build the new healthcare for the next century. ABOUT THE AUTHOR. INTRODUCTION. SECTION 1: PATIENT FIRST. CHAPTER 1 PATIENT-CENTERED CARE. CHAPTER 2 KEY TO ACCESS HEALTH CARE. CHAPTER 3 ADDRESS PATIENTS QUESTIONS AND NEEDS. CHAPTER 4 SHARING VISION OF CARE. CHAPTER 5 MEETING PATIENTS EXPECTATIONS AND SATISFACTIONS. CHAPTER 6 FEAR AND ANXIETY RELIEF: FAMILY CARE. CHAPTER 7 ENGAGING PATIENTS. SECTION 2: TEAM APPROACH. CHAPTER 8 BUILDING TEAM APPROACH AND COMMUNICATIONS. CHAPTER 9 COMMON GROUND WITH THE PATIENTS. CHAPTER 10 CONFUSION OVER CARE. CHAPTER 11 COORDINATE PATIENTS PARTECIPATION. CHAPTER 12 SCHEDULING. CHAPTER 13 DO PATIENTS WANT TO PARTECIPATE? SECTION 3: THE TRUE NORTH. CHAPTER 14 TRANSPARENCY AND HONESTY. CHAPTER 15 THE TRUE NORTH ALIGNEMENT. CHAPTER 16 QUALITY VALUES. CHAPTER 17 OPTIMIZED HEALTH CARE SERVICES. CHAPTER 18 HEALING RELATIONSHIPS. CHAPTER 19 INFORMATION POWER. CHAPTER 20 THE ROLE OF TECHNOLOGY AND TELEMEDICINE.. SECTION 4: LONG TERM AND CHRONIC CARE. CHAPTER 21 CONTINUITY OF PATIENTS CARE AND ADVANCE DIRECTIVES. CHAPTER 22 INVOLVEMENT OF FAMILY MEMBERS AND CAREGIVERS. CHAPTER 23 LONG TERM FACILITIES. CHAPTER 24 COMFORT LEVEL. CHAPTER 25 CHRONIC CONDITIONS AND PAIN MANAGEMENT. CHAPTER 26 DIGNITY IN DEMENTIA. SECTION 5: BUILDING QUALITY SYSTEMS. CHAPTER 27 PATIENTS FLOW AND PRESS GAINEY SCORE. CHAPTER 28 CLINICAL STAFF AND BETTER PATIENTS EXPERIENCE. CHAPTER 29 FALL PREVENTION: ENGAGING THE FAMILY. CHAPTER 30 HAND HYGIENE. CHAPTER 31 TIME OUT FOR BETTER QUALITY. CHAPTER 32 SET UP STRATEGIES. SECTION 6: HEALTH CARE CHANGE OF THINKING. CHAPTER 33 THE CHANGE OF THINKING. CHAPTER 34 PHYSICAL WELLNESS. CHAPTER 35 CIRCLE OF HEALTH. CHAPTER 36 DIFFICULT PATIENTS. CHAPTER 37 PSYCHOLOGICAL SUPPORT, DEPRESSION, SUICIDE. CHAPTER 38 RESPECT PATIENT CHOICES AND AUTONOMY. Eldo E. Frezza, MD, MBA, FACS has been a board-certified physician for more than 20 years with 8 years of experience in health administration. He has a strong ability to improve financial, supply chain, quality and patient safety operations. He is a visible, hands-on leader with advisory expertise. He has a progressive understanding of flow and throughput with a reputation for establishing improvements and has a knowledge of utilization management. He has served as Chief of Service and Chief of Surgery where he provided leadership and direction to successful transition from operating loss, to financial profit while drastically improving emergency and OR throughput. He also served as Director of Surgical Services for a private hospital where he assessed operations and established new metrics for OR; developed and implemented revised supply chain procedures for the OR to improve efficiency and achieve significant cost savings. He has published books in Business and Ethics in healthcare including, The Business of Surgery, published by Cine-Med, copyright 2007; Professionalism & Ethics in a Surgical Practice published by Cine-Med, copyright 2008; and numerous articles. He received his medical degree Cum Laude from the University of Padua School of Medicine, Italy and his MBA in Health Organization management from Texas Tech Rawls School of Business, Lubbock, TX.

Background Shared decision making is an important component of patient‐centred care and decision aids are tools designed to support patients' decision making and help patients with depression to make informed choices. Objective The study aim was to assess the effectiveness of a web‐based decision aid for patients with unipolar depression. Design Randomized controlled trial. Setting and participants Adults diagnosed with a major depressive disorder and recruited in primary care centres were included and randomized to the decision aid (n=68) or usual care (n=79). Intervention Patients in the decision aid group reviewed the decision aid accompanied by a researcher. Outcome measures Knowledge about treatment options, decisional conflict, treatment intention and preference for participation in decision making. We also developed a pilot measure of concordance between patients' goals and concerns about treatment options and their treatment intention. Results Intervention significantly improved knowledge (P<.001) and decisional conflict (P<.001), and no differences were observed in treatment intention, preferences for participation, or concordance. One of the scales developed to measure goals and concerns showed validity issues. Conclusion The decision aid “Decision making in depression” is effective improving knowledge of treatment options and reducing decisional conflict of patients with unipolar depression. More research is needed to establish a valid and reliable measure of concordance between patients' goals and concerns regarding pharmacological and psychological treatment, and the choice made.

Background This study aimed to systematically evaluate interventions and effects that promote involvement in medication safety among older people with chronic diseases and to provide new ideas and references for developing standardized and effective intervention strategies to improve patient involvement in medication safety. Methods A comprehensive literature search across twelve databases was conducted using both computerized and manual methods. The search was limited to studies designated as randomized controlled trials or quasi-experimental studies and was conducted from the time of each database’s inception until September 2023. Two researchers independently carried out qualitative analyses, which included screening the literature, extracting the data, and assessing the quality of the selected studies. Results This study included five studies involving a total of 388 participants, with interventions aimed at enhancing patient involvement in medication safety, including interactive health education, motivational interviewing, and medication reconciliation. However, direct evidence confirming the positive impact of these interventions in promoting medication safety behaviors among older people with chronic diseases is still lacking. Conclusions Patient involvement in medication safety behaviors is essential for promoting healthy aging. Medication education, motivational interviewing, and medication reconciliation may improve the willingness and ability of older people to participate. However, limitations in the methodological quality of current studies prevent drawing definitive conclusions, highlighting the urgent need for more high-quality research. Trial registration PROSPERO number CRD42023494924.

Background Evidence-based medicine education has not focused on how clinicians involve patients in decision-making. Although shared decision-making (SDM) has been investigated to address this issue, there are insufficient data on SDM in physiotherapy. This study aimed to clarify the issues concerning patient involvement in Japan, and to examine whether SDM is related to perceptions of patient involvement in decision-making. Methods The study participants were recruited from among acute and sub-acute inpatients and community residents receiving physiotherapy outpatient care, day care, and/or home rehabilitation. The Control Preference Scale (CPS) was used to measure the patients' involvement in decision-making. The nine-item Shared Decision-Making Questionnaire (SDM-Q-9) was used to measure SDM. In analysis I, we calculated the weighted kappa coefficient to examine the congruence in the CPS between the patients' actual and preferred roles. In analysis II, we conducted a logistic regression analysis using two models to examine the factors of patient involvement. Results Analysis I included 277 patients. The patients' actual roles were as follows: most active (4.0%), active (10.8%), collaborative (24.6%), passive (35.0%), and most passive (25.6%). Their preferred roles were: most active (3.3%), active (18.4%), collaborative (39.4%), passive (24.5%), and most passive (14.4%). The congruence between actual and preferred roles by the kappa coefficient was 0.38. Analysis II included 218 patients. The factors for patient involvement were the clinical environment, the patient's preferred role, and the SDM-Q-9 score. Conclusions The patients in Japan indicated a low level of decision-making involvement in physiotherapy. The patients wanted more active involvement than that required in the actual decision-making methods. The physiotherapist's practice of SDM was revealed as one of the factors related to perceptions of patient involvement in decision-making. Our results demonstrated the importance of using SDM for patient involvement in physiotherapy.

Background Patient and public involvement (PPI) is widely promoted in health research, care services and governance. It is increasingly framed as a matter of rights, dignity and accountability. Despite strong policy support, PPI remains conceptually diverse, unevenly implemented and persistently vulnerable to tokenism, with PPI contributors often reporting unclear influence and weak feedback. Recent literature has highlighted the need for stronger ethical anchoring of PPI beyond standards, frameworks and reporting requirements. Main argument This position paper explores how tokenism in PPI can be reduced by adapting established steps from the Gothenburg person-centred care (PCC) framework, grounded in Paul Ricœur’s “little ethics”, to involvement practices beyond the clinical encounter. We propose person-centred PPI (PC-PPI) as a practice-oriented approach comprising three core collaborative steps: (1) Initiating the partnership through shared narrative, (2) Working the partnership through explicit negotiation of decision rights, and (3) Safeguarding the partnership through documentation and follow-up, as well as three organisational readiness domains that function as ethical minimum requirements for reflective self-assessment for all involved. Contribution PC-PPI shifts the focus from general levels of influence to specifying and documenting meaningful decision rights for concrete activities, supported by practical tools such as a relational bridge framework and an impact log. The feedback loop supports contributor empowerment during the involvement process by making influence visible, explainable and contestable over time. Organisational readiness domains further clarify that PC-PPI cannot rely on willingness alone, but requires sustained ethical, structural and accountability support. Implications By translating person-centred ethics into concrete steps and organisational practices, PC-PPI offers a pragmatic way to reduce tokenism while remaining adaptable to context, resources and ongoing learning. The approach has implications for professionals, organisations, and policymakers seeking to move from formal PPI requirements towards auditable, ethically grounded partnership practices. Plain English summary Why this paper? Service users, patients, carers, and community representatives can actively contribute to healthcare improvement and research. This is also called patient and public involvement (PPI). However, PPI is not always experienced as meaningful. People may be invited too late. They may have little influence. They may also receive little or no feedback about how their input was used. This can be discouraging. What we did: We explored how PPI could be done in a more transparent way. We drew on ideas from person-centred care (PCC), where similar ethical challenges have been addressed. We adapted these ideas to PPI and call this approach person-centred PPI (PC-PPI). What we propose: PC-PPI has three practical steps: 1. Listening carefully to develop a shared understanding of what is most important, 2. Negotiating decision rights for each activity, 3. Documenting how input is used and feeding this back over time. We also describe three areas where organisations need to be ready. This includes support for both PPI contributors and professionals, e.g. through preparation or skills training. Organisations need routines for fair and accessible participation. They also need clear systems for accountability. Why this matters: PC-PPI aims for partnership. It does not promise that every suggestion will be adopted. Instead, it commits to transparent processes that make involvement clear, fair and visible. PPI contributors can see how they made a difference. Organisations can demonstrate transparent decision-making through documentation and follow-up. We hope this approach helps reduce tokenism, strengthens trust and supports more meaningful partnerships.

Background Patient contact is integral to undergraduate medical training. While political strategies emphasise the ‘patient’s voice’ in medical education, the literature on how to enhance the active involvement of real-time patients is sparse. Increased demands for real-time patient interactions in primary care poses a challenge for educators to provide adequate opportunities for students to learn. Evidence on how students may benefit from patients’ active involvement may inform the design and construction of teaching/learning encounters to optimise the educational value while maintaining positive patient experiences. This study aimed to identify how the involvement of real-time patients in medical education might be enhanced. It examined two research questions: •How does enhanced patient involvement support student learning in different areas of practice? • What can be done to enhance patients’ active involvement in medical students’ training to support those learning benefits? Methods We conducted focus groups with patients, workshops and interviews with medical students and analysed the data using codebook thematic analysis. Results Patient contact helped students develop their knowledge, clinical and interpersonal skills, professional values, confidence and sense of identity. Students learn by practising the role of a doctor, observing clinicians and reflecting on their experiences. Real-time patients provided experience of diversity, real-life stories and contextual variations that promoted learning. Patients would like to perform active roles, such as shaping encounters and providing explanations, feedback and emotional support to students. While such active involvement may provide learning opportunities for students, many patients were unable to perform active roles during their previous interactions with students. Patients’ active involvement may be facilitated by ensuring adequate introductions, good relationships and an explicit invitation. Conclusion The resulting model may form the basis for future research and interventions that encourage and support patients to actively participate in teaching consultations. [293 words]

Pulmonary hypertension (PH) adds a substantial disease burden, including higher mortality, when associated with interstitial lung disease (ILD), a severe, chronic, progressive condition. Yet little is known of the lived experiences, perspectives, priorities, and viewpoints of patients and carers living with PH‐ILD. The Voice of the Patient meeting at the center of this qualitative research study aims to provide these difficult‐to‐obtain insights from a European perspective for the first time. The multistakeholder approach brought together four PH‐ILD patients, three primary caregivers, two patient associations, clinical experts, sponsor representatives, and a facilitator. Of the six major themes identified in the thematic analysis, symptoms, and physical limitations were the most impactful. Shortness of breath was the most bothersome symptom affecting patients daily. Further symptoms included fatigue, cough, dizziness, syncope, edema, and palpitations. Physical limitations focused on reduced mobility, impacting patients’ ability to perform daily tasks, hobbies, sports, and to enjoy travel. Existing antifibrotic and pulmonary arterial hypertension‐targeted treatments were perceived as beneficial. However, despite advances in treatment, severe disease burdens and high unmet medical needs persist from the perspectives of patients. Most meaningful to patients’ daily wellbeing was supplemental oxygen, enabling greater mobility. Patients and carers reported difficulties and barriers in navigating the healthcare system and obtaining adequate information to reduce their considerable uncertainties, documenting the substantial challenges that rare and complex conditions such as PH‐ILD pose for routine clinical practice beyond PH expert centers and indicating an urgent need for high‐quality patient‐ and clinician‐directed information to support patient‐centered care.

This article describes a Patient and Public Involvement (PPI) led creative workshop space held within a clinical trial of a talking therapy for distressing voices (AVATAR2). PPI adds significant value to clinical research and ensures the work is meaningful to patients and their supporters. However, known issues include tokenism, a common power imbalance between PPI colleagues and researchers and a lack of opportunity for PPI to shape the research. PPI has played a key role at all stages of the AVATAR2 trial, including design, recruitment of staff and participants, data collection, analysis, and dissemination. An active and creative group of people was established, with over 30 members flexibly involved across all four sites. PPI group members were from diverse backgrounds, with lived experience of mental health conditions and recovery, and including carers . During this work, PPI colleagues identified that they would value a creative space which would help to promote the study but extend beyond an exclusive focus on trial deliverables. A regular creative workshop was established to support PPI colleagues in their creative work, including material such as poetry, blogs, art and podcasts. PPI colleagues and trial staff have cowritten a reflective piece to share their experiences on the impact of the creative workshops, organised into four themes. We found the workshops to be a powerful tool for forging relationships among trial staff and PPI colleagues, while also fostering personal development. We reflected on how the workshops built up the confidence of attendees and supported demanding trial activities such as public speaking. Finally, we discussed the impact of the workshops on wider trial culture, by upholding the values of the team and challenging the status quo.

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement (‘translation’) of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration.