Kathy North
speaker
13 appearances
1 recordings
1 series
first heard Dec 2018
last heard Dec 2018
Kathy North’s voice in public audio — every appearance, attributed to the second.
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Appearances
I think the lesson to be learnt from the negative press around My Health Record is that we all, as a research community and in partnership with government, need to be very much on the front foot when it comes to community engagement.
And, you know, whether it's My Health Record, big data or in the area of genomic data, the elements of privacy and the patient
owning and having control over their own data is incredibly important.
So I think, and particularly going forward in new areas such as genomics or the sharing of big data, public engagement first and foremost, so that we're talking more about the benefits while we're managing the risks at multiple levels.
so that people can feel secure about the access to and the use of their data.
I think we also need to put it into the context if we're going to change the healthcare system to make it more cost-effective, we have to change our focus so we're not waiting for diseases to occur and then treating them.
We're taking a much more cost-effective approach.
which is about prevention, early intervention and early identification.
And so whether it's around a rare genetic disorder or a common disorder that has genetic and environmental inputs, then we're going to need to be able to use big data from millions of individuals to make an accurate prediction for an individual, which is the basis of this.
I think that with...
patient consent and probably a dynamic...
Well, then we also see that on Facebook and social media, there's a lot of information that people put out there that is used without their permission.
But when it comes to your health data or your genomic data, we really need to be very cognisant of the wishes of the individual and use the digital technologies to have a dynamic consent platform so that people are engaged with what is happening, because it's going to be very different from now to 10 years' time.
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