Paediatric Medicines: A View from Patient Organisations

2006 ◽  
pp. 13-24
Author(s):  
Alastair Kent ◽  
Cor Oosterwijk ◽  
Tsveta Schyns ◽  
Ysbrand Poortman
Keyword(s):  
Patient Organisations ◽  
Paediatric Medicines

scholarly journals Cancer care during COVID-19: Data from 157 patient organisations

2021 ◽  
Vol 79 ◽  
pp. S259
Author(s):  
R. Giles ◽  
E. Baugh ◽  
F. Cordoso ◽  
A. Filicevas ◽  
J. Fox ◽  
...  
Keyword(s):  
Cancer Care ◽  
Patient Organisations

scholarly journals Beyond the high: Mapping patterns of use and motives for use of cannabis as medicine

2021 ◽  
pp. 145507252098596
Author(s):  
Sinikka L. Kvamme ◽  
Michael M. Pedersen ◽  
Sagi Alagem-Iversen ◽  
Birgitte Thylstrup
Keyword(s):  
Mental Health ◽  
Side Effects ◽  
Sleep Disturbances ◽  
Online Survey ◽  
Cannabis Use ◽  
Health Conditions ◽  
Convenience Sample ◽  
Mental Health Conditions ◽  
Patient Organisations ◽  
Patterns Of Use

Background: In Denmark the boundaries between cannabis as an illicit drug and licit medicine have shifted rapidly in recent years, affecting also policy. However, the vast majority of Danes, who use cannabis as medicine (CaM) continue to rely on the unregulated market for supply. This study explores patterns of use and motives for use of CaM in Denmark. Methods: An anonymous online survey was made available to a convenience sample of users of CaM from July 14, 2018 to November 1, 2018. Participants were recruited through patient organisations, social and public media, and the illegal open cannabis market. Results: Of the final sample ( n = 3,021), a majority were women (62.6%) and the mean age was 49 years. Most had no prescription for CaM (90.9%), a majority had no or limited previous experience with recreational cannabis use (63.9%), and had used CaM for two years or less (65.0%). The most common form of intake was oil (56.8%) followed by smoke (24.0%). CBD oil (65.0%) was used more than hash, pot or skunk (36.2%). Most frequent conditions treated were chronic pain (32.0%), sleep disturbances (27.5%), stress (23.7%), osteoarthritis (22.7%), anxiety (19.6%), and depression (19.6%). Overall, users experienced CaM to be effective in managing somatic and mental health conditions and reported relatively few side-effects. CBD oil only users were more likely to be women, older, have limited recreational experience and have initiated use recently. Conclusions: A new user group has emerged in Denmark that, for the most part, use illegally sourced CaM to treat a broad range of somatic and mental health conditions, often with experienced effect and relatively low level of side-effects. The prevalent use of low-potency CBD oil indicates an interest in effects beyond the high normally associated with cannabis use. More clinical research into the effects and side-effects of CaM is needed to draw the boundaries of the medical utility of cannabis.

scholarly journals Exposing drug industry funding of UK patient organisations

BMJ ◽  
2019 ◽  
pp. l1806 ◽  
Author(s):  
Piotr Ozieranski ◽  
Emily Rickard ◽  
Shai Mulinari,
Keyword(s):  
Drug Industry ◽  
Industry Funding ◽  
Patient Organisations

Ethical, Legal and Regulatory Issues of Paediatric Translational Research. Call for an Adequate Model of Governance

2020 ◽  
Vol 27 (3) ◽  
pp. 213-231
Author(s):  
Annagrazia Altavilla ◽  
Viviana Giannuzzi ◽  
Mariangela Lupo ◽  
Donato Bonifazi ◽  
Adriana Ceci
Keyword(s):  
Translational Research ◽  
Research Infrastructure ◽  
Paediatric Research ◽  
Adequate Model ◽  
Regulatory Issues ◽  
Societal Issues ◽  
Translational Approach ◽  
Legal Frameworks ◽  
Ethical Oversight ◽  
Paediatric Medicines

Abstract The lack of paediatric medicines, including innovative and advanced ones, is a long-lasting and well-known problem at European and international levels. Despite the existing legal frameworks and incentives, children remain deprived of many kinds of therapy because of challenges faced in appropriately study and tailoring medicinal and other products for them. In this context, the necessity to foster paediatric research addressing unsolved and uncovered issues within a ‘translational approach’ has appeared. This article, after having clarified the concept of translational research in the perspective of the establishment of a European paediatric research infrastructure (RI), will identify and point out ethical, legal and regulatory issues particularly relevant in a children’s rights perspective. It concludes asking for the setting up of an adequate model of governance within a future RI, including adequate and independent ethical oversight and a pluridisciplinary common service dealing with ethical, legal and societal issues relevant for children.

Out of Compassion of Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial

2021 ◽  
Vol 8 (3) ◽  
pp. 1-23
Author(s):  
Hedva Eyal
Keyword(s):  
Clinical Trial ◽  
Compassionate Use ◽  
Human Clinical Trial ◽  
Biotech Company ◽  
Patient Organisations ◽  
Informed Consent Form ◽  
Trial Treatment ◽  
Post Trial ◽  
The Right ◽  
Lateral Sclerosis

This article examines the intersection of compassion and rights, and how the two concepts are constituted and wielded in the context of human clinical trials. Doron, an ALS patient who was recruited to a clinical trial, believed that he had the right to post-trial treatment according to the wording of an informed consent form he signed before joining the trial. However, the biotech company sponsoring the trial instead offered him ‘compassionate use’ access, i.e., access at its discretion rather than as a legal obligation on its part. I argue that under a ‘bioeconomy of value’, the human clinical trial regime has been subordinated to two competing discourses: that of compassion and that of patients’ rights. Both are interpreted and deployed differently by the different stakeholders, namely the patient, the biotech company, and the medical establishment. I argue that the adoption, by bioeconomy actors, of a social value discourse of compassion is designed to preserve a hierarchy that deprives the patient of their power and their rights. Simultaneously, this practice highlights the power of the biotech industry as a moral partner and ‘saviour’ in its relationship with patient organisations and its role as a medical–scientific actor in the Israeli healthcare system.

scholarly journals A hidden web of policy influence: The pharmaceutical industry’s engagement with UK’s All-Party Parliamentary Groups

PLoS ONE ◽  
2021 ◽  
Vol 16 (6) ◽  
pp. e0252551
Author(s):  
Emily Rickard ◽  
Piotr Ozieranski
Keyword(s):  
Pharmaceutical Industry ◽  
Conflicts Of Interest ◽  
Pharmaceutical Companies ◽  
Total Drug ◽  
Conflicts Of Interests ◽  
Policy Influence ◽  
Patient Organisations ◽  
Drug Companies ◽  
Health Related ◽  
Industry Needs

Our objective was to examine conflicts of interest between the UK’s health-focused All-Party Parliamentary Groups (APPGs) and the pharmaceutical industry between 2012 and 2018. APPGs are informal cross-party groups revolving around a particular topic run by and for Members of the UK’s Houses of Commons and Lords. They facilitate engagement between parliamentarians and external organisations, disseminate knowledge, and generate debate through meetings, publications, and events. We identified APPGs focusing on physical or mental health, wellbeing, health care, or treatment and extracted details of their payments from external donors disclosed on the Register for All-Party Parliamentary Groups. We identified all donors which were pharmaceutical companies and pharmaceutical industry-funded patient organisations. We established that sixteen of 146 (11%) health-related APPGs had conflicts of interest indicated by reporting payments from thirty-five pharmaceutical companies worth £1,211,345.81 (16.6% of the £7,283,414.90 received by all health-related APPGs). Two APPGs (Health and Cancer) received more than half of the total value provided by drug companies. Fifty APPGs also had received payments from patient organisations with conflicts of interest, indicated by reporting 304 payments worth £986,054.94 from 57 (of 84) patient organisations which had received £27,883,556.3 from pharmaceutical companies across the same period. In total, drug companies and drug industry-funded patient organisations provided a combined total of £2,197,400.75 (30.2% of all funding received by health-related APPGs) and 468 (of 1,177–39.7%) payments to 58 (of 146–39.7%) health-related APPGs, with the APPG for Cancer receiving the most funding. In conclusion, we found evidence of conflicts of interests through APPGs receiving substantial income from pharmaceutical companies. Policy influence exerted by the pharmaceutical industry needs to be examined holistically, with an emphasis on relationships between actors potentially playing part in its lobbying campaigns. We also suggest ways of improving transparency of payment reporting by APPGs and pharmaceutical companies.

scholarly journals Delivering bad news in the perspective of patient rights

2020 ◽  
Vol 66 (3) ◽  
Author(s):  
Krzysztof Sobczak ◽  
Katarzyna Leoniuk ◽  
Agata Janaszczyk
Keyword(s):  
Online Survey ◽  
Patient Rights ◽  
Moderate Level ◽  
Bad News ◽  
Computer Assisted ◽  
Full Information ◽  
Patient Organisations ◽  
National Patient ◽  
Level Of Knowledge ◽  
Attending Physicians

Introduction: The necessity to deliver bad news to patients is one of the classic challenges of medical communication. The applicable patient rights oblige doctors to communicate full information concerning adverse condition tactfully and cautiously.The purpose of the study was to determine the level of knowledge of the rights and responsibilities of the patient in people who had received bad news, to identify the fields in which knowledge is lacking and to check if the level of knowledge affected the patient’s behaviour.Materials and methods: The study was conducted with 314 people who had been given bad news. An original Computer-Assisted Web Interview (CAWI) online survey questionnaire was used. Reaching the respondents was possible thanks to our cooperation with national patient organisations and electronic media.Results: One in 5 respondents (21%) was characterised by little knowledge concerning patient rights and responsibilities; 67% had a moderate level of knowledge or were almost fully aware of their rights. A vast majority of the respondents knew that they were entitled to full information about their condition, prognosis and treatment, as well as an inspection of their medical documentation.Conclusions: The knowledge of patient rights seems to be at an unsatisfactory level. Respondents with a higher education and those suffering from cancer had more knowledge. Patients with little or a moderate level of knowledge of patient rights and responsibilities were more likely to change their attending physicians or discontinue their treatments.

scholarly journals Changes in availability of paediatric medicines in Australia between 1998 and 2002

2005 ◽  
Vol 59 (6) ◽  
pp. 736-742 ◽  
Author(s):  
Jocelyn Chui ◽  
June Tordoff ◽  
David Reith
Keyword(s):  
Paediatric Medicines
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