scholarly journals Patient perspectives on research use of residual biospecimens and health information: On the necessity of obtaining societal consent by creating a governance structure based on value-sharing

2020 ◽  
pp. 174701612091433
Author(s):  
Mayumi Yamanaka ◽  
Mika Suzuki ◽  
Keiko Sato

Very few attempts have been made to survey patient opinions, particularly regarding the use of residual biospecimens and health information in research, to clarify their values. We conducted a questionnaire survey that targeted outpatients of a university hospital to gauge their awareness levels and understand patient perspectives on research that uses these items. Few patients felt that obtaining individual consent for each research study was necessary. Most patients expressed the view that researchers should be obligated to inform them about the research use of their items and be subject to self-directed rules (including sanctions). The research community should try to obtain “societal consent regarding an opt-out system” from the public. A salient value-sharing-based governance structure is necessary for obtaining public trust.

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e030430
Author(s):  
Thomas Ott ◽  
Jascha Stracke ◽  
Susanna Sellin ◽  
Marc Kriege ◽  
Gerrit Toenges ◽  
...  

ObjectivesDuring a ‘cannot intubate, cannot oxygenate’ situation, asphyxia can lead to cardiac arrest. In this stressful situation, two complex algorithms facilitate decision-making to save a patient’s life: difficult airway management and cardiopulmonary resuscitation. However, the extent to which competition between the two algorithms causes conflicts in the execution of pivotal treatment remains unknown. Due to the rare incidence of this situation and the very low feasibility of such an evaluation in clinical reality, we decided to perform a randomised crossover simulation research study. We propose that even experienced healthcare providers delay cricothyrotomy, a lifesaving approach, due to concurrent cardiopulmonary resuscitation in a ‘cannot intubate, cannot oxygenate’ situation.DesignDue to the rare incidence and dynamics of such a situation, we conducted a randomised crossover simulation research study.SettingWe collected data in our institutional simulation centre between November 2016 and November 2017.ParticipantsWe included 40 experienced staff anaesthesiologists at our tertiary university hospital centre.InterventionThe participants treated two simulated patients, both requiring cricothyrotomy: one patient required cardiopulmonary resuscitation due to asphyxia, and one patient did not require cardiopulmonary resuscitation. Cardiopulmonary resuscitation was the intervention. Participants were evaluated by video records.Primary outcome measuresThe difference in ‘time to ventilation through cricothyrotomy’ between the two situations was the primary outcome measure.ResultsThe results of 40 participants were analysed. No carry-over effects were detected in the crossover design. During cardiopulmonary resuscitation, the median time to ventilation was 22 s (IQR 3–40.5) longer than that without cardiopulmonary resuscitation (p=0.028), including the decision-making time.ConclusionCricothyrotomy, which is the most crucial treatment for cardiac arrest in a ‘cannot intubate, cannot oxygenate’ situation, was delayed by concurrent cardiopulmonary resuscitation. If cardiopulmonary resuscitation delays cricothyrotomy, it should be interrupted to first focus on cricothyrotomy.


Author(s):  
Beniamino Schiavone ◽  
Andrea Vitale ◽  
Mena Gallo ◽  
Gianlucasalvatore Russo ◽  
Domenico Ponticelli ◽  
...  

Background: Facebook is the most popular social network across the world and also allows users access to health information. Our study presents an overview of the official Facebook profiles of hospitals in Italy (n = 1351) and how much they are used. Methods: All hospitals were surveyed on the number of Facebook posts in May (post-lockdown) and October (second pandemic wave) 2020. The number of followers, the creation date of the official page, and the frequency of publication—that is, the average number of days between two subsequent posts—were determined. Results: In Italy, only 28% (n = 379) of the hospitals had official Facebook pages, of which 20.6% (n = 78) were public hospitals, and 79.4% (n = 301) were private hospitals. Of the hospitals with Facebook pages, 49.1% used them every week, and public hospitals published more often. Conclusions: Despite the differences between regions and types of management, the number of hospitals in Italy that use Facebook as a tool for the public dissemination of health information is still low. Hospitals should adopt an effective communication strategy using social networks to improve the quality of health care.


2002 ◽  
Vol 41 (05) ◽  
pp. 414-418 ◽  
Author(s):  
I. Mavridis ◽  
C. Ilioudis ◽  
C. Georgiadis ◽  
G. Pangalos

Summary Objectives: Internet technologies provide an attractive infrastructure for efficient and low cost communications in regional health information networks. The advantages provided by the Internet come however with a significantly greater element of risk to the confidentiality and integrity of information. This is because the Internet has been designed primarily to optimize information sharing and interoperability, not security. The main objective of this paper is to propose the exploitation of public-key cryptography techniques to provide adequate security to enable secure healthcare Internet applications. Methods: Public-key cryptography techniques can provide the needed security infrastructure in regional health networks. In the regional health-care security framework presented in this paper, we propose the use of state-of-art Public Key Infrastructure (PKI) technology. Such an e-Health PKI consists of regional certification authorities that are implemented within the central hospitals of each region and provide their services to the rest of the healthcare establishments of the same region. Results: Significant experience in this area has been gained from the implementation of the PKI@AUTH project. Conclusions: The developed PKI infrastructure already successfully provides its security services to the AHEPA university hospital. The same infrastructure is designed to easily support a number of hospitals participating in a regional health information network.


2007 ◽  
Vol 97 (Supplement_1) ◽  
pp. S93-S97 ◽  
Author(s):  
Enrique Regidor ◽  
Luis de la Fuente ◽  
Juan L. Gutiérrez-Fisac ◽  
Salvador de Mateo ◽  
Cruz Pascual ◽  
...  

Publika ◽  
2021 ◽  
pp. 215-226
Author(s):  
MUHAMMAD RIZAL FIRDAUS ◽  
Muhammad Farid Ma'ruf

Penelitian ini bertujuan untuk mengetahui masalah Partisipasi dalam Program Pemberdayaan Masyarakat yang ada di RW 20 Kelurahan Citrodiwangsan. Peneliti menggunakan metode riset kualitatif . Responden dalam penelitian ini yaitu kader dan warga RW 20 Kelurahan Citrodiwangsan. Data dikumpulkan dengan wawancara dan observasi. Penelitian ini menghasilkan tiga temuan. Pertama, partisipasi perencanaan masih tergolong kurang pro aktif dalam mengedukasi warga dikarenakan masih banyak RT yang tidak bisa mewadahi dan mengedukasi masyarakat untuk aktif dalam kegiatan Posyandu Gerbangmas. Kedua, terkait partisipasi pelaksanaan kegiatan masih banyak masyarakat yang memandang sebelah mata kegiatan ini meskipun seluruh warga telah diikutkan secara menyeluruh, hal ini karena kurangnya sosialisasi dari pengurus kader. Ketiga, faktor penghambat yaitu kurangnya memahami arti partisipasi yang rendah dimana masyarakat masih sibuk dengan kesibukannya sendiri serta kurangnya peran RT untuk mendorong masyarakatnya dalam memberikan pengertian akan pentingnya kegiatan posyandu. Oleh karena itu, dari beberapa masalah-masalah yang telah peneliti temukan maka peneliti memiliki saran yang bertujuan untuk memaksimalkan kader maupun RT dalam mengajak masyarakat. Saran tersebut diantaranya adalah pelaksanaan posyandu dilaksanakan pada hari libur, kegiatan posyandu tidak hanya ditempatkan pada satu titik tetapi dijadwalkan untuk berpindah ketempat kawasan lainnya dan memanfaatkan fasilitas media sosial untuk memberikan sosialisasi dan informasi kesehatan balita dan lansia. Kata kunci: masalah partisipasi, program pemberdayaan masyarakat, partisipasi perencanaan, partisipasi pelaksanaan, faktor penghambat partisipasi   This study aims to determine the problem of participation in the Community Empowerment Program in RW 20 Citrodiwangsan Village. Respondents in this study were cadres and residents of RW 20 Citrodiwangsan Village. Data were collected by interview and observation. This study resulted in three findings. First, planning participation is still classified as less proactive in educating residents because there are still many RTs that cannot accommodate and educate the public to be active in Gerbangmas Posyandu activities. Second, with regard to participation in the implementation of activities, there are still many people who underestimate this activity even though all residents have been included as a whole, this is due to the lack of socialization from the cadre management. Third, the inhibiting factor is the lack of understanding of the meaning of low participation where the community is still busy with their own activities and the lack of the role of the RT in encouraging the community to provide an understanding of the importance of posyandu activities. Therefore, from some of the problems that researchers have found, the researcher has suggestions that aim to maximize cadres and RTs in inviting the community. These suggestions include that the implementation of posyandu is carried out on holidays, posyandu activities are not only placed at one point but are scheduled to move to another area and utilizing social media facilities to provide socilization and health information for toddlers and the elderly. Keywords: participation problems, community empowerment programs, planning participation, implementation participation, inhibiting factors for participation


Author(s):  
Eman Elmahjoubi ◽  
Mufida Yamane

Background. The safe use of medicines largely relies on consumers reading the labeling and packaging carefully and accurately, and being able to comprehend and act on the information presented. We aimed to conduct local study on consumers’ perceptions, attitudes and use of written drug information. Methods. A survey included 200 adults of the public in 13 community pharmacies and one main hospital (the University Hospital) in Tripoli city of Libya, using a structured interview technique. Results. The results showed that 73% of participants read drug labels with variation from always (39.72 %) to rarely (10.95%). About 42.46% of pharmacy customers read the Patients Package Inserts (PPIs) routinely, however; 53.42% of them faced difficulties in understanding the labelling. Foreign languages and small font sizes of written information were the most barriers to participants` comprehensibility (44.69 %, 34%) respectively. The findings indicated that 59 % of the respondents were used to obtain information from pharmacists. Despite the relatively high rate of reading to drug labels among pharmacy customers; more than half of them were unable to interpret information correctly. Conclusion. The study demonstrated the need for the implementation of educational and awareness programs for patients by pharmacists to improve the health literacy of medication labels. Steps must be taken to ensure that medicines in Libyan market are supplied with bilingual and non-technical language labels.


Curationis ◽  
2003 ◽  
Vol 26 (2) ◽  
Author(s):  
NM Tembani

A lack of proper monitoring and supervision of clinics in the King William’s Town Health District (Eastern Cape) was highlighted by members of the public in the local newspaper, The Daily Dispatch, during 1999. A clinic audit conducted by the Health Information Unit of the King William’s Town Health District further revealed the inadequacies of clinic supervision in this district. This article describes the qualitative study that was conducted with the aim of optimising clinic supervision in this health district. The study brought to light two issues that appear to be paramount in ensuring optimal clinic supervision.


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