Search results for "patient advocacy"
showing 10 items of 10 documents
Improving the Translational Medicine Process: Moving Patients From "End-Users" to "Engaged Collaborators".
2019
Translational medicine works through the definition of unmet medical needs, their understanding and final resolution. In this complex and multi-disciplinary process patients have always been regarded as "end-users" or no more than "data provider." Considering that the translational practice is nowadays highly inefficient (i.e., large intellectual and economical resources are wasted with limited impact on people health) here we propose to reverse the process: start from patients, engage them, and keep them at the center. A new partnership needs to be formed between the patients and the health care professionals, as well as the treating physicians, to make the most out of the current "health …
The concept of a surrogate is ill adapted to intensive care: Criteria for recognizing a reference person
2016
IF 2.445; International audience; Purpose: In the intensive care unit (ICU), caregivers may find it difficult to identify a suitable person in the patient's entourage to serve as a reference when there is no official surrogate.Methods: We developed a 12-item questionnaire to identify factors potentially important for caregivers when identifying a reference person. Each criterion was evaluated as regards its importance for the role of reference. Responses were on a scale of 0 (not important) to 10 (extremely important). We recorded respondent's age, job title, and number of years' ICU experience. The questionnaire was distributed to all health care professionals in 2 French ICUs.Results: Amo…
Progression-free survival as an end-point in clinical trials of biotherapeutic agents
2007
Abstract Progression-free survival (PFS), the time from registration or randomisation of a patient until objective disease progression or death, can be considered as an outcome for clinical research and also as a basis for regulatory approval. Current experience suggests that greater standardisation and consistency are needed for clinical trials utilising PFS endpoints. To this end, the Biotherapy Development Association (BDA) convened a breakout session on the topic of PFS during its Third Alpine Meeting held 14–16 March 2007. Representatives of the pharmaceutical industry, regulatory agencies, academia, and patient advocacy groups identified challenges, developed recommendations, and work…
Building an advocacy model to improve the dementia-capability of health plans in California
2021
Background Given the high and growing prevalence of Alzheimer's disease and related dementias, and the intensity of this population's care needs, it is imperative that healthcare systems increase their capacity to effectively serve people living with dementia (PLwD). The Dementia Cal MediConnect (Dementia CMC) project proposes an advocacy model that may foster dementia-capable systems change. Methods The Dementia CMC project was a 5-year partnership (2013-2018) between local Alzheimer's organizations and 10 managed care health plans (HPs) in California's duals demonstration. It used an advocacy model with the following steps: (1) Identify dementia-capable best practices to set as systems ch…
The meaning of dignity in nursing home care as seen by relatives
2014
Background: As part of an ongoing Scandinavian project on the dignity of care for older people, this study is based on ‘clinical caring science’ as a scientific discipline. Clinical caring science examines how ground concepts, axioms and theories are expressed in different clinical contexts. Central notions are caring culture, dignity, at-home-ness, the little extra, non-caring cultures versus caring cultures and ethical context – and climate. Aim and assumptions: This study investigates the individual variations of caring cultures in relation to dignity and how it is expressed in caring acts and ethical contexts. Three assumptions are formulated: (1) the caring culture of nursing homes inf…
Management of intracranial hemorrhage in adult patients on extracorporeal membrane oxygenation (ECMO): An observational cohort study.
2017
Background Intracranial hemorrhage (ICH) is a common complication in adults treated with extracorporeal membrane oxygenation (ECMO). The aim of this study was to identify predictors of outcome and investigate intervention strategies following ICH development in ECMO-treated adult patients. Methods We conducted a retrospective review of adult patients (≥18 years) who developed an ICH during ECMO treatment at the Karolinska University Hospital (Stockholm, Sweden) between September 2005 and May 2017. Outcome was assessed by 30-day mortality and Glasgow Outcome Scale (GOS) after 6 months. The statistical analysis was supplemented by a case series of patients who were surgically treated for an I…
The "PC-WIRED" study: Patient Centred Evolution of Websites of Italian Radiotherapy Departments.
2021
Abstract Objectives The aim of this paper was to conduct a survey about the evolution of the information provided by Italian radiotherapy departments with a special focus on patients’ perspective. Methods A two-steps analysis was conducted in 2013 and 2020. Starting from analysis of data for the existing websites of Italian radiotherapy departments, main potential areas of interest for patients were discussed within a dedicated multidisciplinary team composed of radiation oncologists, a web designer, a blogger, a psyco-oncologist, a volunteer and a representative of patients’ association. Results Six patient-oriented features to evaluate the websites of Italian radiotherapy departments were…
Investigator-initiated trials of targeted oncology agents: why independent research is at risk?
2010
Background: Drug development traditionally has relied upon the complementary contributions of clinicians and scientists at academic institutions and at pharmaceutical companies. Greater regulatory burdens, increased bureaucratic requirements, restricted reimbursement, and spiralling research and development costs are exerting pressure on the drug development pipeline. The result is a de-emphasis of exploratory research, particularly independent academic research, despite its proven value in identifying new drug targets and developing innovative cancer therapies. Design: An expert panel assembled by the Biotherapy Development Association-a nonprofit international forum for academic and indus…
Vulnerability in health care - reflections on encounters in every day practice
2013
Vulnerability is a human condition and as such a constant human experience. However, patients and professional health care providers may be regarded as more vulnerable than people who do not suffer or witness suffering on a regular basis. Acquiring a deeper understanding of vulnerability would thus be of crucial importance for health care providers. This article takes as its point of departure Derek Sellman's and Havi Carel's discussion on vulnerability in this journal. Through different examples from the authors' research focusing on the interaction between health professionals and patients, existential, contextual, and relational dimensions of vulnerability are illuminated and discussed. …
Hepatitis C: The beginning of the end-key elements for successful European and national strategies to eliminate HCV in Europe
2018
Abstract: Hepatitis C virus (HCV) infection is a major public health problem in the European Union (EU). An estimated 5.6 million Europeans are chronically infected with a wide range of variation in prevalence across European Union countries. Although HCV continues to spread as a largely silent pandemic, its elimination is made possible through the availability of the new antiviral drugs and the implementation of prevention practices. On 17 February 2016, the Hepatitis B & C Public Policy Association held the first EU HCV Policy Summit in Brussels. This summit was an historic event as it was the first high-level conference focusing on the elimination of HCV at the European Union level. The …