Research imperative.
Ontology highlight
ABSTRACT:
SUBMITTER: Trachtman H
PROVIDER: S-EPMC6461583 | biostudies-literature | 2019 Jun
REPOSITORIES: biostudies-literature
Publications
There is a note of caution expressed when clinical care providers enroll their own patients into investigational trials, a concern expressed in the called dual-role consent. There is concern that this circumstance may create a conflict of interest for the physician-investigator, lead to loss of patient voluntarism, and promote the therapeutic misconceptions. In this opinion paper, I review the circumstances surrounding participation in clinical research and the conduct of standard patient care. ...[more]
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Project description:In the last decade, Paraguay has made progress in the development of health-related research involving human subjects. This entails the obligation of the State to ensure that research is conducted ethically: protecting the dignity, rights and welfare of the participants, scientific integrity and adherence to international ethical guidelines. Research Ethics Committees are the main instance or resource to guarantee the aforementioned obligation. In view of the above and the context lacking adequate regulation in which research is currently carried out in the country, this article will defend the ethical imperative of establishing an accreditation system for research ethics committees. To this end, its necessity will be presented and justified and some objections related to the ethical imperative defended will be answered, such as the per se value of the accreditation of research ethics committees in the protection of participants, the investment of time and bureaucracy involved in the accreditation processes and the incipient regulatory framework for research on human beings in Paraguay. Finally, it will be proposed to strengthen the governance of research ethics in the country, as the main means to establish, implement and supervise an accreditation system for research ethics committees.
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Project description:Plain English summary:Integrated knowledge translation is a research approach in which researchers work as partners with the people for whom the research is meant to be of use. A partnered approach can support the use of Indigenous ways of knowing in health research that may then be used in health care. This is important as current health care models do not often support Indigenous values, ways of knowing, and care practices. We describe 1) why it is necessary to co-create knowledge that includes the voices of Indigenous community members, 2) how integrated knowledge translation is a way of doing research that includes many views and 3) how integrated knowledge translation can help those involved in research to agree upon and uphold ethical ways of doing research. Integrated knowledge translation may be used to include Indigenous ways of knowing into mainstream health research and to improve health systems. The use of an integrated knowledge translation approach in research may guide researchers to be research partners with Indigenous people and groups. Integrated knowledge translation may be a way to do research that is respectful and to ensure that Indigenous ways of knowing are included in both health research and health care systems. Abstract:Background Indigenous people are affected by major health issues at much higher rates than for general populations, and Western health care models do not respond or align with Indigenous values, knowledge systems, and care practices. Knowledge translation (KT) describes ways of moving knowledge from theory into health systems' applications, although there are limitations and concerns related to the effectiveness and contributions of Western-informed approaches to research and KT practices that promote health with Indigenous groups. Integrated KT is an approach to research that engages researchers with the people for whom the research is ultimately meant to be of use ("knowledge users") throughout the entire research process. Integrated KT is done in ways that knowledge users may define as useful, relevant, and applicable in practice, and may also be viewed as complementary to Indigenous health research principles. Main In this paper, we raise and discuss questions posed to researchers by Indigenous knowledge-users about perspectives on health research, researchers, and research institutions, and focus on the role and ethical imperative for integrated KT in Indigenous health research. We describe: 1) why it is necessary to co-create knowledge that includes the voices of Indigenous community members within institutional academic spaces such as universities; 2) how integrated KT accommodates Indigenous and Western-informed perspectives in community-research partnerships throughout the research process; and 3) how an integrated KT approach can help those involved in research to define, agree upon and uphold ethical practices. We argue that integrated KT as a collaborative research practice can create opportunities and space within institutional academic settings for different knowledges to coexist and improve health systems. Most importantly, we argue that integrated KT in Indigenous research contexts includes Indigenous KT. Conclusion The use of integrated KT facilitates opportunities to further define and develop understandings about collaborative approaches to research with Indigenous research partners and that may contribute to respectful inclusion of Indigenous KT practices and processes within institutional academic settings. In the pursuit of useful, relevant and applicable knowledge, those within Western research and health systems must examine and expand upon collaborative approaches to KT.
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Project description:BackgroundLife-saving orphan drugs are some of the most expensive medicines. European Union governments aim to accommodate their provision within stretched healthcare budgets but face pressure to reduce funding of such treatments. Patients struggle to retain or gain access to them as their special status is questioned, causing distress and in some cases, fears of premature death. In the UK and EU reimbursement and pricing model of drugs, and orphan drugs in particular, is being re-evaluated.MethodsUsing the United Kingdom as a case study we present, for the first time, legal arguments which compel governments to provide orphan medicinal products. These include (i) disability legislation, (ii) national and organisational constitutions, (iii) judicial review, (iv) tort law and (v) human rights legislation. We then address directly potential objections to our analysis and counter arguments which aim to limit provision of orphan drugs to the intended patient recipients.ResultsWe demonstrate that a compelling case can be made that the law demands the treatment of orphan diseases.ConclusionsOur legal framework will assist doctors and patients in ensuring the continued provision of treatments despite significant economic pressure to reduce funding. These legal avenues will empower stakeholders in drafting funding guidelines throughout the EU. The legal right to treatment extends beyond rare diseases and our analysis may therefore affect allocation of healthcare budgets throughout the EU.
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Project description:In the fast-moving world of personalised medicine there are many issues and barriers-not least when it comes to getting novel drugs and treatments swiftly to where they are really needed. Slow bench-to-bedside rates do not help the 500 million potential patients across the EU's current 28 Member States, and the timings are affected by several elements during the development and licensing phases. As we all know, personalised medicine starts with the patient. It holds huge potential for improving the health of many patients and ensuring better outcomes for health systems' efficiency and transparency.
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Project description:Breast cancer (BC) is the most common malignancy and the second cause of cancer-related death among women. It is estimated that 9 in 10 cases of BC are due to non-genetic factors, and approximately 25% to 30% of total breast cancer cases should be preventable only by lifestyle interventions. In this context, physical activity represents an excellent and accessible approach not only for the prevention, but also for being a potential support in the management of breast cancer. The present review will collect the current knowledge of physical activity in the background of breast cancer, exploring its systemic and molecular effects, considering important variables in the training of these women and the evidence regarding the benefits of exercise on breast cancer survival and prognosis. We will also summarize the various effects of physical activity as a co-adjuvant therapy in women receiving different treatments to deal with its adverse effects. Finally, we will reveal the impact of physical activity in the enhancement of quality of life of these patients, to conclude the central role that exercise must occupy in breast cancer management, in an adequate context of a healthy lifestyle.
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Project description:BACKGROUND:Optimizing the use of social media to promote hospital branding is important in the present digital era. In Taiwan, only 51.1% of hospitals have official Facebook fan pages. The numbers of likes for these hospitals are also relatively low. OBJECTIVE:Our objective was to establish a special branding team for social media operation, led by top administrators of our hospital. Here we present our strategic imperative for promoting hospital branding as well as an analysis of its effectiveness. METHODS:Led by top administrators, the branding team was formed by 11 divisions to create branding strategies. From 2016 to 2018, the team implemented action plans. All information unique to the hospital was posted on Facebook, as well as on the hospital's official website. To determine the plans' efficiencies, we obtained reference data from Google Analytics, and we compared Facebook Insights reports for 2016 with those for 2017 and 2018. RESULTS:One of the branding team's main missions was to establish branding strategies and to integrate segmental branding messages. In each quarter we regularly monitored a total of 52 action plan indicators, including those for process and outcome, and discussed the results at team meetings. We selected 4 main performance outcome indicators to reflect the effectiveness of the branding efforts. Compared with 2016, the numbers of likes posted on the Facebook fan page increased by 61.2% in 2017 and 116.2% in 2018. Similarly, visits to the hospital website increased by 4.8% in 2017 and 33.1% in 2018. Most Facebook fan page and website viewers were in 2 age groups: 25 to 34 years, and 35 to 44 years. Women constituted 60.42% (14,160/23,436) of Facebook fans and 59.39% (778,992/1,311,605) of website viewers. According to the Facebook Insights reports, the number of likes and post sharing both increased in 2017 and 2018, relative to 2016. Comment messages also increased from 2016 to 2018 (P=.02 for the trend). The most common theme of posts varied over time, from media reports in 2016, to innovative services in both 2017 and 2018. Likes for innovative services posts increased from 2016 through 2018 (P=.045 for the trend). By the end of 2018, we recorded 23,436 cumulative likes for posts, the highest number among medical centers in Taiwan. CONCLUSIONS:We achieved the largest number of Facebook fans among all medical centers in Taiwan. We would like to share our experience with other hospitals that might be interested in engaging in social media for future communications and interactions with their patients.
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