Healthcare panel results

The panel considered the issue of sharing information in the health space and implications of that sharing that go beyond simple anonymity of patient data, and into ethical questions such as implicit consent for the patient data to be used in research, and the right of the individual to opt out of research that he or she is opposed to (e.g. studies conducted by big pharma companies). General consensus was that in the UK there is a long standing ethics of sharing personalized, anonymous, data but only if it was used for the advancement of patient well-being, as opposed to generating profit or IPR.

Another major topic that arose was the availability of trusted web sites for patients to look up information on. Internet provides plethora of medical sources, only some of which are in line with the prevailing medical culture in the UK. Patients will look everywhere, including non-conventional sites, so methods for establishing trusted web sites should be considered. Social networking forums also have great influence e.g. NHS has delivered discussions on contraception with teenagers using online advisors on Bebo. Interestingly, teenagers withdraw as soon as they realise the discussion is organized by NHS.

Finally, the importance of self-management programmes was noted to promote patient empowerment for people with long-term illnesses. These require trusted sites and are not yet widely used in the UK, but are in the USA, e.g. Cardionet. It is important to establish continuity of care between primary care, secondary care and the self-management.

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One Response to “Healthcare panel results”

  1. Panel recommendations « The Wealth of Networks Says:

    […] Healthcare Panel […]

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