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?
In the complex machine of modern healthcare, until recently the patient has been a small cog. In this special in-depth feature, we ask stakeholders from across healthcare to share their insights on how engaging patients is transforming the industry - Magazine Article - Pharmatimes
Good article...but I believe pharma patient group relationships are also about managing expectations... on both sides
In his Guardian blog yesterday, Dick Vinegar, asks a genuinely good question: 'Who is fighting the patient's corner?' He writes about his recent attendance at a Westminster Health Forum conference about Healthwatch, and voices concern that all we are doing is creating just another bureaucracy in the name of patients. A thick, muddy, layer of…
"But I do fear that we are at times in danger of creating an industry that reflects the interests of its managers and owners, rather than the social movement – a group of people with a common ideology who try together to achieve certain general goals – that I hear many people aspire too. " SImon's comment is something we all need to heed
The ESR spoke with Donna Walsh, executive director of the European Federation of Neurological Associations (EFNA) about how her organisation supports patients with brain disorders and how well patients are informed about the role of radiology in...
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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