Latest / The FIT4Privacy Podcast | Exploring ISO Standards AI Privacy | Grow Skills Store / Navigating GDPR in the Pharmaceutical Sector
Transcript
- 0:00How do financial or not financial, I should say
- 0:02pharmaceutical companies navigate the challenge of GDPR,
- 0:07the new laws that are coming up, and especially HIPAA in the USI
- 0:10mean, what's happening? How do they see it?
- 0:13Do they see it as a problem? Do they see it as a solution?
- 0:16Do they see it as a business enabler?
- 0:18What do you observe? I observe D all of the above.
- 0:23So you know that that said, what we most commonly see is, you
- 0:28know, hey, the regulatory landscape is changing, right?
- 0:31So technology all around us is changing.
- 0:33And then the use cases in which data can be valuable to these
- 0:37companies is also very rapidly evolving and without the
- 0:41appetite to try new things is evolving.
- 0:42But then how do you do that against the backdrop of the
- 0:45regulatory frameworks? Where we see companies be the
- 0:48most successful is when they think about it, not necessarily
- 0:51in the explicit letter of the law.
- 0:53And to be clear, I'm not saying we don't pay attention to the
- 0:55letter of the law, but they kind of distil it.
- 0:57So what are the core concepts? And the idea of mitigating the
- 1:00risk of re identification is actually a central theme to
- 1:03pretty much any territories regulation on consumer or
- 1:07patient privacy. And so now they word it
- 1:10differently. They sometimes describe it in
- 1:12different ways, but at the same time, at its core, that's what
- 1:15they're after. These companies are really
- 1:17taking this approach of like, OK, so how can I extract utility
- 1:21from the information without actually, you know, raising the
- 1:24risk of re identifying an individual?
- 1:26And if we do that, then we have the opportunity to produce
- 1:29strategic advantage because, you know, especially as you start
- 1:32thinking about machine learning, you know, data science
- 1:34capabilities, the almost dreaded buzzword of AI, you know, in
- 1:39some extent that gets a lot more, you know, kind of
- 1:42complicated, but it also becomes a lot more unique because No2,
- 1:46even if you're running the same type of models, you get 2 very
- 1:48different answers at the end based on what your business
- 1:51knows about the domain and then the types of information that
- 1:55you give it. And so starting in that position
- 1:58enables the companies to better navigate the various territorial
- 2:02regulations. Yeah, I agree with you.
- 2:04And in this multi, what do you say landscape, multi law
- 2:09landscape, especially for companies that are conducting
- 2:13clinical trials and clinical trials as you would imagine they
- 2:17have to be conducted across the board.
- 2:20You can't say we'll conduct it with European data or U.S. data
- 2:23or African data. It has to be globally done.
- 2:26So what kind of challenge do they face and how can that
- 2:29challenge be solved? Because it's practically very
- 2:31challenging to comply law by law.
- 2:34Yeah. And clinical trials are an
- 2:36extremely complicated thing, you know, whether it be site
- 2:38selection or how do you, you know, attract qualified
- 2:42participants and how do you sort of reduce waste and time?
- 2:45You know, the, the most heartbreaking thing is, you
- 2:47know, the pursuit of a a trial and it takes 5 or 6 years to
- 2:50even build the panel for participants, right.
- 2:52And so with that, though, you know, again, kind of a similar
- 2:56spirit to the previous answer is that when you're kind of focused
- 3:00on what are the, you know, kind of particular spirit of the law,
- 3:04where how how might you approach the idea of, hey, are there
- 3:09other data points that I can pull from sort of non
- 3:12traditional considerations? And how, you know, how might
- 3:14that be used to go create look, alikes and audience panels that,
- 3:19you know, aren't actually getting at one individual
- 3:21uniquely? But how could you use historic
- 3:23information out of consumer data and you know, clinical data from
- 3:29say you know, medical claims, you know, and equivalents around
- 3:33the world to kind of understand the types?
- 3:35Of. You know, preceding conditions
- 3:38that often lead to the things that are of concern for a trial,
- 3:42you know, where diagnosis have been made in the past, those
- 3:45types of things. And then how might you merge
- 3:46those, you know, in a way that is compliant.
- 3:48And that's where there's a lot of very robust privacy enhancing
- 3:52technologies, tokenization capabilities, and then also very
- 3:58robust statistical models to help with some of the
- 4:00remediation and then models to help with what are the look
- 4:04alikes, You know, what are where how can you go attract, you
- 4:08know, clinical participants? And what what's kind of
- 4:12interesting in these types of approaches where we've seen them
- 4:14deployed so far is that the ability to kind of clear the
- 4:17territory regulations starts to increase because at the core,
- 4:21you're kind of in a rolling start.
- 4:22And so then it's really more around, are there other
- 4:24considerations for how you manage consent for, you know,
- 4:28how, how do you manage like the ability to be forgotten, you
- 4:31know, those types of things. So they become a little bit more
- 4:33administrative versus the core data set.
- 4:36And the secondarily, it also allows you to kind of spin up
- 4:37the idea of running the recruitment in parallel to the
- 4:42site selection versus what's often a bit of a kind of chicken
- 4:45and egg argument that, well, if I don't have this, I can't go
- 4:49get people, but then it takes a whole long time to get people.
- 4:51So you know, then the clinical side's on hold and you know,
- 4:55just produces a lot of frustration for all involved
- 4:57because you know, the intention behind it is still, you know,
- 5:00very good, very pure, but. You know, it's like, how do you?
- 5:03Get rid of the regulation as being the core challenge.
- 5:05And so that's that's a bit of the way we can network that
- 5:07makes sense. And if we continue the
- 5:10conversation between the GDPR and hip hop, I think the US and
- 5:15the EU have taken different approaches towards the
- 5:18regulation. Is there anything?
- 5:20And of course, end of the day, the regulation is same as you
- 5:23mentioned earlier, it's about achieving certain objectives.
- 5:27But what is it that can be learned from both perspectives
- 5:30or both approaches? Yeah.
- 5:32So you know GPR, you know, strictly my opinion, GPR has
- 5:35done a really good job about us as individuals, right.
- 5:38So they were very thoughtful and the way they lay out the
- 5:42framework to give we as individuals a lot more rights to
- 5:46control over our data and that kind of has a universal
- 5:49application. And you know, here in domestic
- 5:51US, we saw the state of California, as it started to
- 5:54introduce its Consumer Protection Act, it, it actually
- 5:58had a lot of sort of kindred spirit, if you will, to GDPR in
- 6:02terms of introducing very similar types of rights, you
- 6:05know, for as individually as consumers.
- 6:08HIPAA, on the other hand, kind of originated from a slightly
- 6:10different place. And you know, it, it's, it's
- 6:13always kind of fun to remember that HIPAA actually started with
- 6:16the intention of being it preventing the idea of
- 6:19discrimination based on a health condition, right?
- 6:22And then it evolved very quickly from that, where it's also
- 6:25really important to be able to share information around and
- 6:27then the idea of minimum necessary.
- 6:29So like, how much information really is required to, you know,
- 6:32handle the task at hand? And then how do you use this
- 6:36data in such a way that you're not betraying someone's
- 6:38identity, thus increasing the risk of discrimination?
- 6:41And so, you know, their starting points are very different, but
- 6:44overtime, you know, they are kind of starting to come towards
- 6:47the middle of it. You know, whether or not the US
- 6:50will ultimately adopt, you know, a federal that's a national
- 6:53standard similar to GDPR. You know, that's up for, you
- 6:57know, our, our friends in Washington to figure out, you
- 7:00know, but that that said it, it has been very interesting to
- 7:05watch how companies that act in the US, you know, that are
- 7:07global. So they're headquarters
- 7:09somewhere in the EU are just kind of coming up with a default
- 7:11position of saying, hey, we're, we're going to balance these two
- 7:14things. And then, you know, how do we
- 7:16harmonise across the regulatory standards and then here in the
- 7:20US in particular, how do we navigate what our state level
- 7:22regulations where they they might have a different or
- 7:25slightly more strict interpretation.