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Personal data: What to do with it and how?

As more and more patient data becomes available electronically, the need for legal and technical standards on how to use this data properly increases. The ultimate goal is to ensure privacy and still enable researchers to use the information for the public good.

COPENHAGEN, DENMARK - (HealthTech Wire / News) - “EHealth systems and the data they contain can enable patients and caregivers to make better decisions about health and treatment”, said Joanna Groves, CEO of the International Alliance of Patients’ Organizations (IAPO). “There are worries among patients that increasing access to personal data may compromise privacy. In general, though, patients want to make sure that data can be used for the public good.”

Story Highlights
  • Internet offers various new options for health-oriented research, for example in case of identifying certain risk groups, e.g. binge drinkers, with the help of Facebook profiles
  • Patient registries become important for medical research and public health research
  • "EHealth systems and the data they contain can enable patients and care givers to make better decisions about health and treatment

The internet offers various new options for health-oriented research

The internet, in particular, offers various new options for health-oriented research, as Matic Meglic , who is head of the Health Care Informatics Centre at the National Institute of Public Health in Slovenia, pointed out. He gave the example of identifying certain risk groups, for example binge drinkers, with the help of Facebook profiles. “This kind of information could be used in principle for tailored interventions”, Meglic argued.

Another data source that is becoming increasingly important for medical research and public health research is patient registries. The PARENT Joint Action was launched in May 2012 with 60% co-funding from the European Commission. Its task is to bring together best practice cases of patient registries in Europe and merge this with more eHealth-oriented projects like epSOS or the eHealth Governance Initiative. Towards the end of the thirty-month project, specific methodological guidelines and governance guidelines for patient registries will be formulated and distributed to Member States.

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Source: HealthTech Wire

Published in GoDirect / Newspartner

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