A group of clinical trials doctors announce, in a position paper in the New England Journal of Medicine, that they should have complete ownership of patients' data, basically forever, so that they can publish as many papers as they like. They even demand that other scientists pay them some undetermined amount of money in order to get access to the data, and even then they want a delay of up to five years. Nowhere do they mention any concern for the patients.
@Sdenegri tx for this alert! But who does own patient clinical data?
Data and research on health including biotechnology, cancer, health care, health spending, health insurance, fitness, dementia, disability, obesity, smoking, genetics and mortality., We need to better understand what the patients themselves think of health care. The OECD is a global leader in collecting, reporting and benchmarking health system performance and health care quality indicators and OECD's Patient-Reported Indicators Survey (PaRIS) will address critical information gaps and build a patient-centred view of health system performance.
OECD launches its own Patient Reported Indicatots survey (PaRIS) comparing countries
Why not participate in this PatientView study about 2016/2017? - the questionnaire is available in 16 languages Danish | Dutch | English | Finnish | French | German | Greek | Hungarian | Italian | Japanese | Korean | Portuguese | Polish | Spanish | Swedish | Turkish (for online links to the questionnaire the…
More than half of seriously ill, hospitalized patients ranked death better than bowel and bladder incontinence and dependence on a ventilator, but the findings shouldn't be taken literally, said a coauthor.
Access to healthcare is a basic human right and one of the fundamental principles of European health systems. Treatment should be timely and accessible to every patient who needs it, not only to those who can pay for it. Regrettably, this is not a reality for all.Patient access is a key priority for the European Patients’ Forum (EPF), and one of our strategic goals for 2014 - 2020. In our vision, health systems should enable equitable access to sustainable and high-quality healthcare for all patients.A Definition of Access from the Patients’ Perspective
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