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Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem.Pharmaceutical Medicine Jul 2023What is patient-centricity? In some contexts, it has been associated with targeting therapies based on biomarkers or enabling healthcare access. There has been a surge...
What is patient-centricity? In some contexts, it has been associated with targeting therapies based on biomarkers or enabling healthcare access. There has been a surge in patient-centricity publications, and in many cases for the biopharmaceutical industry, patient engagement is used to endorse pre-held assumptions at a specific moment in time. Rarely is patient engagement used to drive business decisions. Here we describe an innovative partnership between Alexion, AstraZeneca Rare Disease and patients that allowed a deeper understanding of the biopharmaceutical stakeholder ecosystem and an empathic understanding of each patient's and caregiver's lived experience. Alexion's decision to build patient-centricity frameworks resulted in the formation of two unique organisation design platforms: STAR (Solutions To Accelerate Results for patients) and LEAP (Learn, Evolve, Activate and deliver for Patients) Immersive Simulations. These interconnected programmes required cultural, global, and organisational shifts. STAR generates global patient insights that are embedded in drug candidate and product strategies while helping to establish enterprise foundational alignment and external stakeholder engagement plans. LEAP Immersive Simulations produce detailed country-level patient and stakeholder insights that contribute to an empathetic understanding of each patient's lived experience, support country medicine launches and provide ideas to have a positive impact along the patient journey. Combined, they deliver integrated, cross-functional insights, patient-centric decision making, an aligned patient journey, and 360° stakeholder activation. Throughout these processes, the patient is empowered to dictate their needs and validate the proposed solutions. This is not a patient engagement survey. This is a partnership where the patient co-authors strategies and solutions.
Topics: Humans; Ecosystem; Rare Diseases; Patients; Health Services Accessibility; Biological Products
PubMed: 37142887
DOI: 10.1007/s40290-023-00474-y -
Nephrology Nursing Journal : Journal of... 2021Hospitals face the increasing challenge of balancing the need to provide quality care with that of being cost-effective. While guidelines and benchmarks for quality care...
Hospitals face the increasing challenge of balancing the need to provide quality care with that of being cost-effective. While guidelines and benchmarks for quality care exist in many areas within the hospital, those guidelines can be lacking for the acute (inpatient) dialysis setting. Nephrology nurses working in this setting may provide hemodialysis, peritoneal dialysis, continuous kidney replacement therapy, and apheresis treatments at the patient's bedside and in an acute dialysis unit. This article discusses the need to promote patient and nurse safety in acute dialysis settings through advocacy and collaboration.
Topics: Humans; Inpatients; Peritoneal Dialysis; Quality of Health Care; Renal Dialysis
PubMed: 33886246
DOI: No ID Found -
BMC Health Services Research Jun 2023The immigrant population across Europe is ageing rapidly. Nurses will likely encounter an increasing number of patients who are older adult immigrants. Moreover, access...
BACKGROUND
The immigrant population across Europe is ageing rapidly. Nurses will likely encounter an increasing number of patients who are older adult immigrants. Moreover, access to and equal provision of healthcare is a key issue for several European countries. The relationship between nurses and patients is asymmetrical with unequal power relations; however, the way nurses construct the patient through language and discourse can help maintain or change the balance of power. Unequal power relations can affect access and be a hindrance to equal healthcare delivery. Hence, the aim of this study is to explore how older adult immigrants are discursively constructed as patients by nurses.
METHODS
An exploratory qualitative design was used. Data were collected through in-depth interviews with a purposive sample of eight nurses from two hospitals. The nurses' narratives were analysed using critical discourse analysis (CDA) as described by Fairclough.
RESULTS
The analysis identified an overarching, stable, and dominant discursive practice; 'The discourse of the other', with three interdiscursive practices: (1) 'The discourse on the immigrant patient versus an ideal patient'; (2) 'The expert discourse'; and (3) 'The discourse of adaption'. Older immigrant adults were constructed as 'othered' patients, they were different, alienated, and 'they' were not like 'us'.
CONCLUSION
The way nurses construct older adult immigrants as patients can be an obstacle to equitable health care. The discursive practice indicates a social practice in which paternalism overrides the patient's autonomy and generalization is more prevalent than a person-centred approach. Furthermore, the discursive practice points to a social practice wherein the nurses' norms form the basis for normal; normality is presumed and desirable. Older adult immigrants do not conform to these norms; hence, they are constructed as 'othered', have limited agency, and may be considered rather powerless as patients. However, there are some examples of negotiated power relations where more power is transferred to the patient. The discourse of adaptation refers to a social practice in which nurses challenge their own existing norms to best adapt a caring relationship to the patient's wishes.
Topics: Humans; Aged; Narration; Patients; Hospitals; Language; Nurses; Qualitative Research
PubMed: 37286985
DOI: 10.1186/s12913-023-09590-6 -
Cancer Jan 2021Disagreements between patients and caregivers about treatment benefits, care decisions, and patients' health are associated with increased patient depression as well as...
BACKGROUND
Disagreements between patients and caregivers about treatment benefits, care decisions, and patients' health are associated with increased patient depression as well as increased caregiver anxiety, distress, depression, and burden. Understanding the factors associated with disagreement may inform interventions to improve the aforementioned outcomes.
METHODS
For this analysis, baseline data were obtained from a cluster-randomized geriatric assessment trial that recruited patients aged ≥70 years who had incurable cancer from community oncology practices (University of Rochester Cancer Center 13070; Supriya G. Mohile, principal investigator). Patient and caregiver dyads were asked to estimate the patient's prognosis. Response options were 0 to 6 months, 7 to 12 months, 1 to 2 years, 2 to 5 years, and >5 years. The dependent variable was categorized as exact agreement (reference), patient-reported longer estimate, or caregiver-reported longer estimate. The authors used generalized estimating equations with multinomial distribution to examine the factors associated with patient-caregiver prognostic estimates. Independent variables were selected using the purposeful selection method.
RESULTS
Among 354 dyads (89% of screened patients were enrolled), 26% and 22% of patients and caregivers, respectively, reported a longer estimate. Compared with dyads that were in agreement, patients were more likely to report a longer estimate when they screened positive for polypharmacy (β = 0.81; P = .001), and caregivers reported greater distress (β = 0.12; P = .03). Compared with dyads that were in agreement, caregivers were more likely to report a longer estimate when patients screened positive for polypharmacy (β = 0.82; P = .005) and had lower perceived self-efficacy in interacting with physicians (β = -0.10; P = .008).
CONCLUSIONS
Several patient and caregiver factors were associated with patient-caregiver disagreement about prognostic estimates. Future studies should examine the effects of prognostic disagreement on patient and caregiver outcomes.
Topics: Aged; Caregivers; Female; Humans; Male; Neoplasms; Patients; Prognosis
PubMed: 33036063
DOI: 10.1002/cncr.33259 -
International Journal of Older People... Jul 2023Nurses are consistently present throughout the rehabilitation of older patients but are apprehensive about performing goal-centred care in the multidisciplinary team. (Review)
Review
BACKGROUND
Nurses are consistently present throughout the rehabilitation of older patients but are apprehensive about performing goal-centred care in the multidisciplinary team.
OBJECTIVES
The aim of this review was to explore working interventions on setting goals and working with goals designed for nurses in geriatric rehabilitation, and to describe their distinctive features.
METHODS
We performed a scoping review. We searched MEDLINE and CINAHL through August 4, 2021. Search terms related to the following themes: nurses, rehabilitation, geriatric, goal and method. We used snowballing to find additional. From the selected studies, we systematically extracted data on means, materials and the nursing role and summarized them in a narrative synthesis, using intervention component analysis.
RESULTS
The study includes 13 articles, describing 11 interventions which were developed for six different aims: improving multidisciplinary team care; increasing patient centredness; improving disease management by patients; improving the psychological, and emotional rehabilitation; increasing the nursing involvement in rehabilitation; or helping patients to achieve goals. The interventions appeal to four aspects of the nursing profession: assessing self-care skills incorporating patient's preferences; setting goals with patients, taking into account personal needs and what is medically advisable; linking the needs of the patient with multidisciplinary professional treatment and vice versa; and thus, playing an intermediate role and supporting goal achievement.
CONCLUSIONS
The interventions show that in goal-centred care, the nurse might play an important unifying role between patients and the multidisciplinary team. With the support of nurses, the patient may become more aware of the rehabilitation process and transfer of ownership of treatment goals from the multidisciplinary team to the patient might be achieved. Not many interventions were found meant to support the nursing role. This may indicate a blind spot in the rehabilitation community to the additional value of its contribution.
Topics: Humans; Aged; Nurse's Role; Motivation; Patients
PubMed: 37082887
DOI: 10.1111/opn.12542 -
BMC Health Services Research Jun 2023Chronic diseases are increasing worldwide, and the complexity of disease management is putting new demands on safe healthcare. Telemonitoring technology has the...
BACKGROUND
Chronic diseases are increasing worldwide, and the complexity of disease management is putting new demands on safe healthcare. Telemonitoring technology has the potential to improve self-care management with the support of healthcare professionals for people with chronic diseases living at home. Patient safety threats related to telemonitoring and how they may affect patients' and healthcare professionals' sense of security need attention. This study aimed to explore patients' and healthcare professionals' experiences of safety and sense of security when using telemonitoring of chronic conditions at home.
METHODS
Semi-structured interviews were conducted with twenty patients and nine healthcare professionals (nurses and physicians), recruited from four primary healthcare centers and one medical department in a region in southern Sweden using telemonitoring service for chronic conditions in home healthcare.
RESULTS
The main theme was that experiences of safety and a sense of security were intertwined and relied on patients´ and healthcare professionals´ mutual engagement in telemonitoring and managing symptoms together. Telemonitoring was perceived to increase symptom awareness and promote early detection of deterioration promoting patient safety. A sense of security emerged through having someone keeping track of symptoms and comprised aspects of availability, shared responsibility, technical confidence, and empowering patients in self-management. The meeting with technology changed healthcare professionals' work processes, and patients' daily routines, creating patient safety risks if combined with low health- and digital literacy and a naïve reliance on technology. Empowering patients' self-management ability and improving shared understanding of the patient's health status and symptom management were prerequisites for safe care and the patient´s sense of security.
CONCLUSIONS
Telemonitoring chronic conditions in the homecare context can promote a sense of security when care is co-created in a mutual understanding and responsibility. Attentiveness to the patient's health literacy, symptom management, and health-related safety behavior when using eHealth technology may enlighten and mitigate latent patient safety risks. A systems approach indicates that patient safety risks related to telemonitoring are not only associated with the patient's and healthcare professionals functioning and behavior or the human-technology interaction. Mitigating patient safety risks are likely also dependent on the complex management of home health and social care service.
Topics: Humans; Patient Safety; Chronic Disease; Delivery of Health Care; Telemedicine; Patients; Qualitative Research
PubMed: 37340472
DOI: 10.1186/s12913-023-09428-1 -
Revista Da Escola de Enfermagem Da U S P 2021To identify and analyze the production of knowledge in national and international literature on patient absenteeism in scheduled medical consultations. (Review)
Review
OBJECTIVE
To identify and analyze the production of knowledge in national and international literature on patient absenteeism in scheduled medical consultations.
METHOD
This is an integrative literature review in the databases PubMed, Embase, Scopus, Web of Science, CINAHL, Medline, LILACS, Virtual Health Library of the São Paulo State Department of Health and Spanish Bibliographic Index in Health Sciences, accessed through the Virtual Health Library Portal, based on the guiding question.
RESULTS
A total of 767 articles was found and nine were selected. Forgetfulness predominated among the reasons for absence. Other findings regarding the cost to the health service and strategies for solving the problem are highlighted.
CONCLUSION
As the focus of the studies, the concern with the quality of care, increased treatment queues and high demand, as well as the cost of absent patients, are evident. Despite the relevance of the theme for the health services organization, the literature is still scarce.
Topics: Bibliometrics; Brazil; Humans; No-Show Patients; Outpatients; Referral and Consultation
PubMed: 34423800
DOI: 10.1590/1980-220X-REEUSP-2020-0380 -
Computers, Informatics, Nursing : CIN Jan 2022Older adults can benefit from using patient portals. Little is known whether perception of and use of patient portals differ among older adults in diverse healthcare...
Older adults can benefit from using patient portals. Little is known whether perception of and use of patient portals differ among older adults in diverse healthcare contexts. This study analyzed the difference in perceived usability, self-efficacy, and use of patient portals between older adults recruited from a healthcare system (n = 174) and older adults recruited from nationwide communities (n = 126). A secondary data analysis was conducted using the data sets of two independent studies. A series of linear and ordinal logistic regression analyses were performed. The healthcare system sample had more health issues, higher levels of perceived usability and self-efficacy, and frequent use of patient portals compared with the community sample. This study indicates that efforts to improve usability of patient portals and self-efficacy are essential for all older adult users. The association between perceived usability and patient portal use was stronger in the community sample than in the healthcare system sample, suggesting that approaches to support older adults' efficient use of patient portals should be tailored to their health status and care needs. Future studies may include inpatient and outpatient portals and investigate the impact on health outcomes of older adults across care settings.
Topics: Aged; Delivery of Health Care; Humans; Inpatients; Outpatients; Patient Portals; Perception
PubMed: 34347646
DOI: 10.1097/CIN.0000000000000802 -
Nursing Apr 2021Patients who learn they carry breast cancer genes 1 and 2 (BRCA1/2) must decide if, when, and how they want to disclose this information to family members who may be...
Patients who learn they carry breast cancer genes 1 and 2 (BRCA1/2) must decide if, when, and how they want to disclose this information to family members who may be affected. This article discusses the psychosocial factors that may influence patient decisions to disclose positive BRCA1/2 results to family members, as well as the role of nurses in educating and advocating for patients and their families.
Topics: Breast Neoplasms; Decision Making; Disclosure; Family Relations; Female; Genes, BRCA1; Genes, BRCA2; Genetic Predisposition to Disease; Humans; Male; Nurse's Role; Nurse-Patient Relations; Patient Advocacy; Patient Education as Topic; Patients
PubMed: 33759867
DOI: 10.1097/01.NURSE.0000733956.47297.e6 -
Rehabilitation Nursing : the Official... 2020The purpose of this study was to assess the impact of chronic illness on patients in relation to its physical, psychological, and social effects, and its effects on...
The purpose of this study was to assess the impact of chronic illness on patients in relation to its physical, psychological, and social effects, and its effects on activities of daily living. A structured questionnaire was used to interview I77 patients. Chronic illness had the greatest effect on psychological functioning, followed by physical and social functioning. The least affected aspects of a patient's, functioning were related to performing activities of daily living (ADLs). Results indicated that the diagnosis, duration of disease, and developmental stage of the patient S children were useful in predicting the impact of a chronic illness on a patient's physical functioning. Diagnosis, duration of disease, and economic status had a significant impact on a patient's psychological functioning. Diagnosis, duration of disease, age, sex, occupation, education, and marital and economic status were important factors relative to social functioning. Diagnosis, age, marital status, the developmental stage of the children, and the primary caregiver were the most important factors related to the effects of chronic illness on ADLs. The results of the study serve as a guide for a comprehensive assessment of chronically ill patients.
Topics: Adult; Aged; Analysis of Variance; Caregivers; China; Chronic Disease; Cost of Illness; Female; Humans; Male; Middle Aged; Patients; Surveys and Questionnaires
PubMed: 32604258
DOI: 10.1097/RNJ.0000000000000271