Patents and Scientific Research

Author(s):  
Sulan Wong

It is argued that patents encourage scientific development, benefiting society by creating useful products and services that improve the quality of life. However, by granting exclusive rights of exploitation, patents create situations in which they interfere with the exercise of the freedom of scientific research. This work examines five scenarios where this problem can be seen and the utilitarian function of patents is questioned. Firstly, the effects of research funding in the definition of the lines and research objectives are observed. Secondly, the anticommons is studied, as it is a situation where excessive fragmentation of ownership in scientific knowledge may prevent its use. Thirdly, broad patents and their implications are examined. Fourthly, the deterrent power of patent litigation, which creates an unexpected business model, is analyzed. Fifthly, secrecy is looked upon, as it is encouraged by the logic in which the patent system works.

Author(s):  
Sulan Wong

It is argued that patents encourage scientific development, benefiting society by creating useful products and services that improve the quality of life. However, by granting exclusive rights of exploitation, patents create situations in which they interfere with the exercise of the freedom of scientific research. This work examines five scenarios where this problem can be seen and the utilitarian function of patents is questioned. Firstly, the effects of research funding in the definition of the lines and research objectives are observed. Secondly, the anticommons is studied, as it is a situation where excessive fragmentation of ownership in scientific knowledge may prevent its use. Thirdly, broad patents and their implications are examined. Fourthly, the deterrent power of patent litigation, which creates an unexpected business model, is analyzed. Fifthly, secrecy is looked upon, as it is encouraged by the logic in which the patent system works.


Author(s):  
Mark Oprenko

The definition of the multimorbidity concept reveals insufficient specificity of the comorbidity and multimorbidity definitions and, as a result, confusion in the use of these terms. Most authors are unanimous that the “core” of multimorbidity is presence of more than one disease in a patient. These coexisting diseases can be pathogenetically interconnected and non-interconnected. Regardless, the degree of multimorbidity always affects prognosis and quality of life.


Work ◽  
2021 ◽  
pp. 1-10
Author(s):  
Emília Martins ◽  
Rosina Fernandes ◽  
Francisco Mendes ◽  
Cátia Magalhães ◽  
Patrícia Araújo

BACKGROUND: The health-related quality of life construct (QoL) implies a relationship with eating habits (EA) and physical activity (PA). Sociodemographic and anthropometric variables (gender, age and Body Mass Index - BMI) are highlighted in the definition of healthy lifestyle habits promotion strategies. OBJECTIVE: We aim to characterize and relate PA, EA and QoL in children/youth and explore gender, age and BMI influences. METHODS: It is a non-experimental study, with 337 children/youth, ages between 8 and 17 years (12.61±2.96), mostly from the rural inland of Portugal. In data collection we used a sociodemographic and anthropometric questionnaire, a weekly register table of EA and Kid-Kindl (QoL). Statistical analysis (p <  0.05) were performed in SPSS-IBM 25. RESULTS: Lower BMI was associated with better EA (p <  0.001), PA (p <  0.05) and self-esteem (p <  0.01) and worse scores on family subscale of QoL. Female showed higher fruit intake (p <  0.05). The older has shown better results. PA is positively correlated with QoL (p <  0.01) and EA (p <  0.05). CONCLUSIONS: It is important to explore other relevant social and family dimensions, to promote intervention programs with parents, school and community, as well as healthy practices policies. The intervention in these age groups is critical for a longer-term impact in improving healthy life habits.


2008 ◽  
Vol 27 (6) ◽  
pp. 369-369
Author(s):  
Sharyn Gibbins

NEONATOLOGY IS A RELATIVELY NEW MEDICAL SPECIALITY that arose from the recognition that neonates were different from adults and other pediatric patients. The recognition of these differences between patients led, in part, to the development of perinatology and neonatology programs across the globe. As scientific knowledge and medical education evolved, so too did the recognition that nurses played an essential role in the care of high-risk infants. No longer restricted to Florence Nightingale’s initial advocacy for a nurturing environment only, the profession of nursing extends into areas of practice, education, mentorship, health advocacy, and research.


Author(s):  
Fernanda Karla Nascimento ◽  
Roberta Alvarenga Reis ◽  
Alexandre Saadeh ◽  
Fran Demétrio ◽  
Ivaneide Leal Ataide Rodrigues ◽  
...  

Objective: to describe attributes associated with the Quality of Life of Brazilian transgender children and adolescents according to their own perception. Method: descriptive study conducted with 32 participants between eight and 18 years old, who were either interviewed or participated in focus groups. The statements were transcribed, grouped with the aid of the Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires software, version 0.7 alpha 2 and described according to the definition of Quality of Life by the World Health Organization concerning to the mental, physical, and social dimensions. Results: it was possible to identify the family nucleus as the main social support for transgender children and adolescents. However, the experience of prejudice and discrimination were negative attributes associated with Quality of Life. Conclusion: the statements indicate that lives of transgender children and adolescents are impacted by social, physical, and mental factors due to the stigma and discrimination experienced. It is expected to contribute to the formulation of public policies related to transgender children and adolescents and expand the discussion on the citizens’ duties and rights in relation to transsexuality.


2012 ◽  
Vol 24 (3) ◽  
Author(s):  
Fatin Nadhirah Kamaludin Latifi ◽  
Ida Ayu Evangelina ◽  
Sri Susilawati

Introduction: Patient satisfaction is like many other psychological concepts, it is easy to understand but hard to define. The concept of satisfaction overlaps with similar themes such as happiness, contentment, and quality of life. Satisfaction is not some pre-existing phenomenon waiting to be measured, but a judgment that people form over time as they reflect on their experience. A simple and practical definition of satisfaction would be the degree to which desired goals have been achieved. Methods: The type of this research is descriptive with survey methode. Data is collected through questionnaire with the total sample of 150 respondents. The study population was based on accidental sampling, by which the sample was selected depending on who came to Orthodontic Department of RSGM FKG UNPAD, Bandung by the researcher during the period of the research. Results: The data is then analyzed using Community Satisfaction Index (Indeks Kepuasan Masyarakat) or IKM that which shows that 13 out of 14 indicators are still in B grade and overall IKM value of 7.90%, which means that the level of satisfaction has yet not met the expectation among removable appliances patients in Orthodontic Department of RSGM FKG UNPAD, Bandung. Conclusion: The level of satisfaction among removable appliances patients 0rthodontic are still have not met the patients’ expectation.


2010 ◽  
Vol 10 (1) ◽  
Author(s):  
Eunmi Emily Kwak

The concept of quality of life is a fundamental goal in the practice of music therapy, whether implicitly or explicitly defined in the philosophy of the practitioner. To improve the quality of life is often mentioned as one of the goals for music therapy treatment. However, the definition of quality of life has not always been clearly defined. The purpose of this article is to review the literature concerned with a definition for quality of life in other disciplines and to suggest a model for a more comprehensive definition of the quality of life for use in the practice of music therapy. Anecdotal examples are given to stir the issues toward a more comprehensive definition of the quality of life to be used in music therapy. As the title suggests, this article will not give a decisive answer for the definition of quality of life. However, this article will afford readers a chance to think and revisit their experiences as music therapists and define their own definition for quality of life.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 3491-3491 ◽  
Author(s):  
Alexey Danilov ◽  
Habte A Yimer ◽  
Michael Boxer ◽  
John M Burke ◽  
Sunil Babu ◽  
...  

Introduction: Longitudinal changes in health-related quality of life (HRQoL) are important in patients with chronic lymphocytic leukemia (CLL). GIBB (NCT02320487) is an open-label, single-arm phase II study of obinutuzumab (GA101; G) in combination with bendamustine (G-Benda) in patients with previously untreated CLL. A previous report from the GIBB study demonstrated an investigator-assessed objective response rate of 89.2%, a complete response rate of 49.0%, and no unexpected safety signals with G-Benda (Sharman et al. J Clin Oncol 2017). Here we report the final HRQoL data over 3 years from the GIBB study. Methods: Enrolled patients received G-Benda by intravenous infusion over six 28-day cycles: G 100mg on Day (D)1, 900mg on D2, and 1000mg on D8 and D15 of Cycle (C)1, then 1000mg on D1 of C2-6; benda 90mg/m2 on D2-3 of C1, and on D1-2 of C2-6. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) includes a global health status measure, 5 functional scales (physical, emotional, cognitive, social, and role functioning), 8 symptom scales/items (fatigue, nausea and vomiting, pain, dyspnea, insomnia, appetite loss, constipation, and diarrhea), and an item on financial difficulties (Aaronson et al. J Natl Cancer Inst 1993). The EORTC Quality of Life Questionnaire-Chronic Lymphocytic Leukemia 16 (QLQ-CLL16) is a 16-item module, specific to CLL, containing 4 multi-item scales (fatigue, treatment side effects, disease symptoms, and infection) and 2 single items (social activities and future health worries). Both questionnaires were completed by patients on C1D1 (baseline), C3D1, and C6D1, at the end of induction (EOI) treatment (defined as +28 days from C6D1 or early treatment termination visit), at the response visit (defined as 2-3 months after the EOI treatment for all patients who received study treatment and had not experienced disease progression), and every 3 months thereafter at follow-up visits for up to 2 years. In total, there were 14 timepoints where data were collected. HRQoL scores were linear transformed to a 0-100-point scale. Mean baseline scores and mean score changes from baseline at each visit were evaluated. A threshold of ≥10-point change in score represents a clinically meaningful difference. For symptoms, negative change scores from baseline reflect an improvement in symptom burden. For global health status and functioning, positive change scores from baseline reflect improvements. Results: The trial enrolled 102 patients. Median age was 61 years and 68.4% of patients were male. Ninety-eight patients (96%) completed a questionnaire at baseline and at least 1 other questionnaire during a follow-up visit. Questionnaire completion rates at 14 time points ranged from 96% at baseline to 66% at 27 months follow-up (Table 1). According to the EORTC QLQ-C30 (Figure 1), improvements were observed for global health status at all follow-up visits, and clinically meaningful improvements were observed at the response visit, 3 months follow-up, and 27 months follow-up. Clinically meaningful improvements in role functioning were observed at EOI and persisted throughout the 27-month follow-up. For fatigue, clinically meaningful improvements were observed at every visit starting from the end of treatment (EOT) visit. Improvements were also observed for insomnia with mean reductions from baseline ≥10 points at various time points during follow-up. There was no worsening in other patient-reported symptoms or functional status over time. Similarly, with the EORTC QLQ-CLL16 (Figure 2), clinically meaningful improvements in symptoms were observed for fatigue, disease symptoms, and future health worries during treatment, at the EOT and/or throughout the follow-up. The largest improvement was observed for fatigue (-24.7) at the 24-month follow-up and future health worries (-25.4) at the 27-month follow-up. Conclusions: We previously reported that G-Benda is an effective regimen for first-line treatment of CLL with no unexpected safety signals. The HRQoL data from the GIBB trial suggest that G-Benda treatment consistently improved patient HRQoL over time. Several clinically meaningful improvements were observed in HRQoL, including global health status, functioning, symptoms, and future health worries. Disclosures Danilov: AstraZeneca: Consultancy, Research Funding; Genentech: Consultancy, Research Funding; TG Therapeutics: Consultancy; MEI: Research Funding; Bristol-Meyers Squibb: Research Funding; Verastem Oncology: Consultancy, Other: Travel Reimbursement , Research Funding; Takeda Oncology: Research Funding; Genentech: Consultancy, Research Funding; Bristol-Meyers Squibb: Research Funding; Takeda Oncology: Research Funding; Aptose Biosciences: Research Funding; Aptose Biosciences: Research Funding; Janssen: Consultancy; Pharmacyclics: Consultancy; Bayer Oncology: Consultancy, Research Funding; Celgene: Consultancy; Pharmacyclics: Consultancy; Janssen: Consultancy; Curis: Consultancy; Seattle Genetics: Consultancy; Verastem Oncology: Consultancy, Other: Travel Reimbursement , Research Funding; Gilead Sciences: Consultancy, Research Funding; Bayer Oncology: Consultancy, Research Funding; Curis: Consultancy; Seattle Genetics: Consultancy; MEI: Research Funding; TG Therapeutics: Consultancy; Celgene: Consultancy; Gilead Sciences: Consultancy, Research Funding; AstraZeneca: Consultancy, Research Funding; Abbvie: Consultancy; Abbvie: Consultancy. Yimer:AstraZeneca: Speakers Bureau; Janssen: Speakers Bureau; Seattle Genetics: Honoraria; Celgene: Honoraria; Clovis Oncology: Equity Ownership; Puma Biotechnology: Equity Ownership; Amgen: Consultancy. Boxer:Gerson Lerman: Consultancy; Best Doctors: Consultancy; Takeda: Honoraria, Speakers Bureau; AbbVie: Honoraria, Speakers Bureau. Burke:Celgene: Consultancy; Gilead: Consultancy; Roche/Genentech: Consultancy. Babu:Genentech: Research Funding. Li:Genentech: Employment; Roche: Equity Ownership. Mun:Genentech: Employment, Equity Ownership. Trask:Genentech: Employment, Equity Ownership. Masaquel:Roche: Equity Ownership; Genentech: Employment. Sharman:Acerta: Consultancy, Honoraria, Research Funding; Pharmacyclics LLC, an AbbVie Company: Consultancy, Honoraria, Research Funding; AbbVie: Consultancy, Honoraria, Research Funding; Janssen: Consultancy, Research Funding; Genentech: Consultancy, Honoraria, Research Funding; TG Therapeutics: Consultancy, Honoraria, Research Funding; AstraZeneca: Consultancy, Honoraria, Research Funding. OffLabel Disclosure: GAZYVA (obinutuzumab) is a CD20-directed cytolytic antibody and is indicated: in combination with chlorambucil, for the treatment of patients with previously untreated chronic lymphocytic leukemia; in combination with bendamustine followed by GAZYVA monotherapy, for the treatment of patients with follicular lymphoma (FL) who relapsed after, or are refractory to, a rituximab-containing regimen


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2181-2181
Author(s):  
Robyn M. Scherber ◽  
Martin M. Goros ◽  
Jonathan Gelfond ◽  
Amylou C. Dueck ◽  
Sarah F Christensen ◽  
...  

Background: Quality of life (QOL) is predictive of survival in many malignancy types, including myeloproliferative neoplasms (MPNs; Scherber 2017, Sloan 2012, Montazeri 2009, Nilsson 2017). We have previously characterized that an association exists between symptom burden and QOL among MPN patients, but due to the disease specificity of symptoms, symptoms rather than QOL remains a key therapeutic endpoint (Scherber 2017, NCCN Guidelines). Despite these advancements, our understanding of the extent that different patient and disease characteristics, including symptoms, contribute to overall QOL has remained elusive. In this analysis, we utilized information from a large survey of MPN patients to develop a model of QOL that establishes the degree that individual variables contribute to QOL, including psychosocial variables, comorbidities, and MPN disease symptoms. Methods: The FATIGUE survey of MPN patients (Scherber 2016) investigated self-reported symptoms using the MPN10 (Scherber 2012), depression utilizing the Profile of Mood States-Brief (POMS-B, McNair 1971), Patient Health Questionnaire (PHQ-2, Kroenke 2003) and Mental Health Inventory (MHI-5, Berwick 1991), and QOL utilizing a single numeric analog scale (range 0-10) regarding overall quality of life. Linear regression analysis was utilized to establish the relationship between individual symptoms and QOL, and a structural equation model (SEM) was used to identify complex relationships among patient demographics, behavioral factors, comorbidities, and QOL. Results: A total of 914 patients from the online survey lived in the USA and provided data for this analysis. Average age was 62 with 67% of patients being female and the mean BMI was 25. Education varied across middle school or high school education (22%), undergraduate or college degree (44%), masters (26%), to doctorate (8%). 43% of respondents were employed. Fatigue (β coefficient 0.23, p<0.001), inactivity (β 0.21, p<0.001), concentration difficulties (β 0.13, p<0.001), sad mood (β 0.18, p<0.001), and night sweats (β 0.05, p=0.03) showed statistically significant impact on QOL. SEM Model: We developed the SEM model in Figure 1. Out of all variables analyzed, MPN total symptom burden demonstrated the strongest association with (β 0.89) with QOL, followed by depression (β 0.76). Comorbidities, including COPD and renal issues, age, and body mass index abnormalities had some impact on symptoms (all β <0.40), but did not demonstrate a significant impact on QOL. Comparative Fit Index (CFI) was 0.905 and root mean square error of approximation (RMSEA) was 0.051 (0.048, 0.054) indicating good fit. Conclusions: Previous clinical trials of JAK inhibition have targeted improvement in symptoms as a key endpoint, and ultimately demonstrated improvements in overall survival. The mechanism of this survival benefit has not been fully explored. This analysis suggests that symptoms and mood are strongly associated and potentially a major contributor to QOL among MPN patients, whereas other major comorbidities and age are not as strongly correlated. Efforts are underway to analyze more comprehensive datasets to better understand the role of other variables, including marriage status and financial concerns, on QOL. Disclosures Scherber: Blueprint: Other: Ad board; Incyte: Consultancy; Gilead: Consultancy. Hasselbalch:Novartis: Research Funding; AOP Orphan Pharmaceuticals: Other: Data monitoring board. Mesa:Baxalta: Consultancy; LaJolla: Consultancy; Genentech: Consultancy; Celgene Corporation: Research Funding; Samus: Research Funding; AbbVie: Research Funding; NS Pharma: Research Funding; Novartis: Consultancy, Honoraria, Other: travel, accommodations, expenses; CTI: Research Funding; Galena Biopharma: Consultancy; Pfizer: Research Funding; Incyte: Other: travel, accommodations, expenses, Research Funding; Genotech: Research Funding; AOP Orphan Pharmaceuticals: Honoraria, Other: travel, accommodations, expenses; PharmaEssentia: Research Funding; Gilead Sciences: Research Funding; Promedior: Research Funding; Shire: Honoraria; Sierra Oncology: Consultancy.


Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 10-11
Author(s):  
Mauricette Michallet ◽  
Romain Buono ◽  
Mohamad Sobh ◽  
Solene Poirey ◽  
Emmanuelle Nicolas-Virelizier ◽  
...  

Introduction In France, cancer incidence is increasing, reaching approximately 400,000 new cases in 2017. Thanks to diagnostic and therapeutic advances, net survival at 5 years is improving, with a corollary increase in the number of survivors. Among survivors, 44% have a poor quality of life due to the more or less late onset of treatment-related complications. Despite the objectives of the 2014-2019 national cancer plan considering the latest therapeutic advances, very few initiatives integrating systematic, early detection and management of complications exist in France. Methods and analysis PASCA (Care pathways through cancer) is a single-arm, interdisciplinary, prospective, interventional, cohort study. During a period of 24 months, it is intended to include 858 adults aged 18 to 65 years with non-Hodgkin and Hodgkin lymphoma, acute myeloid leukemia, testicular germ cell tumor, non-metastatic invasive breast cancer, soft tissue sarcoma, osteosarcoma or Ewing's sarcoma at Centre Leon Berard (Lyon, France). The program consists on exhaustive identification of 22 complications at 1 month, 6 months, 24 months and 60 months after the end of first line treatment: social precariousness, return-to-work issues, cognitive problems, anxiety and depression disorders, chronic fatigue, physical deconditioning, overweight/obesity, chronic pain, dermatological disorders, gastrointestinal disorders, sexual disorders, hypogonadism, premature ovarian failure, osteoporosis, chronic kidney failure, heart failure, coronary heart disease, respiratory failure, hypothyroidism, lymphedema, modifiable risk factors associated with the occurrence of secondary cancers. Each identification will give rise to management, which consists of referring the patient to a healthcare professional belonging to the network of dedicated healthcare professionals at the regional level. The course of action to be followed will be defined using decision trees based on international, national or learned society recommendations. Referral outside Centre Leon Berard will be made to a specialist doctor, a health professional from the paramedical field or the patient's general practitioner who will confirm the diagnosis and initiate patient management and follow-up. These patients will also benefit from their usual follow-up in the context of their initial malignancy. Each study visit will include a search for clinical signs using questionnaires, an assay of 12 biological parameters, a urine test strip, 5 tests evaluating physical deconditioning and an electrocardiogram. The weight, height, waist circumference, blood pressure will also be measured. Primary outcome will be the incidence of the 22 complications, measured at 1 month, 6 months, 24 months and 60 months after the end of intensive chemotherapy treatment. Ethics and dissemination The study protocol was approved by the French ethics committee (Comité de protection des personnes Ile de France IV), the study database is currently being declared and registered to the Commission Nationale de l'Informatique et des Libertés (CNIL) and the study on ClinicalTrials.gov. The results will be disseminated to patients and in peer-reviewed journals and academic conferences. Strengths and limitations of this study This study is based on a previous feasibility study with 52 patients recruited in onco-hematology, which demonstrated the feasibility of the intervention and the existence of patient management needs.(1) The study design does not include a comparator arm, as the objective of the study is to provide a comprehensive picture of treatment-related complications, especially those that appear over the long term. Due to the lack of recent data concerning some complications, sample size was calculated empirically on the basis of the active queue of patients at the Centre Leon Berard. References Michallet M, Sobh M, Buono R, Poirey S, Pascu I, Nicolas-Virelizier E, et al. Personalised Follow-up Program after Acute Phase of Treatment in Oncology/Hematology Patients Towards Early Intervention, Better Care and Quality of Life Improvement: Results from Pasca Pilot Study. Blood. 13 nov 2019;134(Supplement_1):5817-5817. Disclosures Nicolini: Sun Pharma Ltd: Consultancy; Incyte: Research Funding, Speakers Bureau; Novartis: Research Funding, Speakers Bureau.


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