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From Data To Health

The BC Platforms' podcast series, ‘From data to health’ brings together innovators representing the ecosystem of users, custodians, contributors of healthcare data. Each guest sheds light on how they advance and envision the future of health through data.

This series is hosted by Dr. Tõnu Esko, Head of Estonian Biobank Innovation Center, BC Platforms SAB chairman and Vice Director, Institute of Genomics, University of Tartu.



Episode #2 Europe Biobank Week: Sharing experiences in partnership – A conversation on collaboration in a global network

This podcast holds an open discussion with a few key leaders, on how to address industry challenges, and find opportunities for successful collaboration between biobanks, healthcare organizations and drug developers in a global network. This is a conversation with our Data Partners on their experience joining our global network and how it has impacted them.



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Ellen Sukharevsky 0:30
Hello and welcome to the BC Platforms Podcast. My name is Ellen, and I will be your moderator today. PC Platforms is the global leader in providing a powerful data discovery and analytics platform, as well as data science solutions for personalized health care. PC Platforms enables cross-functional collaboration with our global federated network of data partners. Today's podcast will focus on the topic of sharing experiences in partnership, conversation on collaboration in a global network that holds an open discussion with a few key leaders, who shed light on how to address industry challenges, and find opportunities for successful collaboration in a global network. Now I will hand it over to our speakers to introduce themselves.

Tõnu Esko 1:08
So Hello, everybody. My name is Tõnu Esko. I'm the Professor of human genomics at University of Tartu, and I'm also the longtime leader and member of the Senior Management Board for the Estonian Biobank, and I have had the pleasure to work with PC Platforms for more than five years.

Sirpa Soini 1:26
Hello, thanks for inviting me to this podcast. My name is Sirpa Soini, and I'm director of THL Biobank with THL stands for The Finnish Institute for Health and Welfare. I've been involved, also like Tony, for 10 years in the biobank world, collaborating with BBMRI-ERIC, and BBMRI-ERIC.fi in Finland, and my basic background is lawyer, so I've also participated in LC work since the beginning.

Outi Törnwall 1:55
Hello, my name is Outi Törnwall, I'm a Data Partnership Director at BC Platforms, also very familiar and working since long time in the biobanking world in different roles, but now at BC Platforms really driving forward and building a data partnership network that enables sharing of data and collaboration, particularly industry driven research.

Ellen Sukharevsky 2:18
Thank you all for your introductions. So now let's jump into today's discussion. To start, let's highlight some research industry trends. Tõnu, would you like to discuss?

Tõnu Esko 2:27
Yes, thanks. So the world has really seen a rapid development of sequencing technologies, as well as ways to integrate and analyze health data. And that really has brought us to the big data term, that has an untapped potential for both track development, but also many ways how we could integrate to big data and integrated omics with personalized health care. So I would like to discuss a little bit on this topic and what that all means for the biobanks, and research organizations.

Sirpa Soini 3:02
Good opening, Tõnu, I fully agree that we have more data than ever, and also the need for good quality data is increasing. It's not just any data, or any samples, to be able to contribute to the development of science, and also to serve our industry's need for real world data, real world evidence-based studies. It's fine to find good collections where the data is actually, so this kind of a network like BC Platforms and other collaborations, help to find the right data at the right time, hopefully, and biobanks are a source of scientific excellence, and they provide great sample and data collections, even for rare specimens, like some biomarkers to validate certain pipelines, to test hypotheses, and also to learn more about the dynamics of genetics, not just associations, but really what's behind it, how they impact. And also biobanks usually provide a safe environment for data access, and collaboration, and data sharing. So these models need to be increased together with industry,

Outi Törnwall 4:11
Definitely, and there has been an increase year over year since I don't know the beginning of 2000, of the use of real world data, such as what biobanks hold, and the utilization of that data and in drug development. So there's a clear need in the market for this type of data, and also research. It's not always so easy to find the combination of clinical data and genomic data in concert, that's sometimes difficult actually to find, but while we are living in this world, where there is an abundance of data, there is still the battle that we need to find them. That's the basis of this collaboration at BC Platforms and BCRQUEST.com where we can bring together these data sources that actually have that meaningful data, that can help the drug developers forward on this path, using real world data.

Tõnu Esko 5:08
I think there are really, really good examples from your sites here. I also like to highlight that, indeed, there is a rise of data, but I think also more and more the healthcare systems, as well as citizens themselves, are ready to take advantage of this, this load of real world evidence as well as genomic data. Maybe 10 years or 15 years ago, when we all started at the core of biobanking, we may have had the aim, but never the ways how to actually integrate the genomics into healthcare. And now there are a lot of different ways how this data is integrated into healthcare and really making benefit for the citizens. And I think that has made the industry realize that there is also value for them, and that could lead to new production services, including more efficient medicines or algorithms or risk prediction programs. So I think we're living in a very exciting time in the sense of data, and the possibilities to access the data.

Ellen Sukharevsky 6:11
Thank you, everyone, for that insightful summary. Could you all tell us a little bit more about what your organization's do and why in general, you decided to join a global network?

Sirpa Soini 6:20
Well, the Finnish Institute for Health and Welfare, we have a long tradition to monitor health and well being of the Finnish population, starting back in the 60s already. So we have lots of good quality population based cohorts, and lately also disease specific cohorts, and lots of genetic data. And we have collaborated for a long time with different kinds of institutes throughout the world, but having learned the need for good quality data, and particularly genomic data, we thought it might be used for us to join the global network, but also enable the industry and other academic researchers to find us, find the data, because the tool of our quest is so very good, in my opinion, to help finding the right cohorts, and combine and collaborate also, it doesn't have to be one bioevent but joined together. We have experience of collaborating with industry, we have open policy for that, and we can also, I think, improve the research and study designs by offering our experts of our institute to join together with these research projects. I think it's an increased value, if you can involve the local expertise and the ones who know the cohorts, and then also the industry needs. One of the biggest examples from Finland is the Fingen Study, which combines all the Finnish biobanks, Finnish clinical biobanks and hospitals and the universities, and also lots of industry environment, because it's funded by 10 big pharma companies. It's fully kind of a pre-competitive research, all the new insights are published, and this is a very good example of what we can really do if there is a will and we are open and plan together. And BC Platforms has been also a member in that collaboration by providing their sophisticated tools for the project. So briefly, this is a background from our Institute,

Outi Törnwall 8:23
Thank you, Sirpa. So briefly, we discussed it earlier, or it was mentioned BCRQUEST.com, which I'm going to introduce now. It's a data partnership network, global network that involves a lot of biobanks, currently today, 12 different biobanks from all over the globe. And it really is a data technology platform that enables data sharing and data finding, Sirpa, you mentioned the finding the data, which is key in this collaboration, whether it's academic or industry driven research, it really is the key to find the right data and samples for collaboration, and also to be able to collaborate in a very easy way, technology driven fast access to data, which BC Platforms is really all about, and the data science that we drive forward is really based on this fast access to data and the right data in a secure manner. So happy to have the THL Biobanks join us and also Tonu, I'll give it to you, you're also a member of BC Platforms and BCRQUEST.com.

Tõnu Esko 9:34
Thanks, Outi, so I represent the Estonian Biobank. It's a national biobank founded in the year 2000, and over the years, we have been able to recreate more than 200,000 participants, and it's more than 20% of the adult population. As it gathers all the health information from those participants for the past 20 years, it's really a value, and like a treasure to mine. The main focus of our work has always been to contribute to the well being of our participants, and also to guide the public and policymakers to actually integrate the genomics and genomic knowledge into health care. It's always in the back of our mind also how to try innovation, how to enable the generation of new products and services that will have impact on health on a global scale. And we really see value in global networks in science, it's obvious because you always need your results to be replicated in independent data sets to see that it's not some false positive signals, but even more, actually having interaction and collaborations with the industry, because industry is thriving. The development of new products and services, algorithms, medicines. And personally, I think it's very crucial to have a ground where to meet between those partners. There has to be a platform, because it's very time consuming to answer all those requests from 10s, or even hundreds of companies who would potentially like to use the data. So thanks for this brief introduction to the stakeholders around the table. I would now like to discuss a little bit what have been the most impactful results from collaborations with industry, and insights or opportunities realized, so maybe Sirpa could talk to us or explain some results from THL network experience?

Sirpa Soini 11:46
Thank you, Tonu and others. Well, THL Biobank is still in a process to be able to fully serve the global community, I think partly because our data models are not always fit with them, with the general data, we have lots of lifestyle data, health data, self reported outcomes related to health and well being, different kinds of measurements. And it's sometimes difficult to translate automatically to some data modules. But there has been a lot of interest and a lot of preliminary studies that we have done to try to make it work.

Outi Törnwall 12:24
Thank you, Sirpa. We have been practicing a lot in this collaboration with the industry and what they are really wanting, what they're asking, how to answer those questions. A lot of the time is spent on this finding the data, Sirpa, you mentioned earlier, this is really a key point, also, Tonu, you mentioned that as you don't want to answer all these questions, you rather be part of a network where the data can be queried, and meaningfully then integrated into research topics, it felt or seen so. But it's been a learning experience, I would say, like a journey that we've learned since the start of the network, late 2017. And what is the industry really looking after, and what kind of data and patient information, what they need, so that has been very insightful, and I think we're just harvesting soon those learnings, and really making them into opportunities that will flourish. Tonu, Estonian Biobank was part of one study that we did together, which was quite interesting, using polygenomic risk scores. And that way, bringing the genomics into healthcare, and really stratifying those patients that would need particular treatment, or could benefit for a particular treatment that is not now, today, not really delivered to them. But that is one exciting opportunity that I think we engaged in together, this research that was actually providing some meaningful results, and hopefully seeing those results, bettering the patient lives in the future.

Tõnu Esko 14:00
Yeah, thanks, Outi, I can really only repeat the same things, that we need the platform to make these kinds of public private partnerships much easier for all the parties, and as Sirpa pointed out ,the health data is always in the local language. So if the data is not structured or displayed in an easy to understand way, it becomes extremely complicated to have even the smallest research collaborations, and I'm not talking about really big and strategic partnerships, where a lot of efforts need to go into the data harmonization and as Outi outlined, I've been working with the BC Platforms a BCRQUEST from it's very inception, and really I think we have done a great job in understanding what are the industry needs, but also keeping in mind what are the data custodians' expectations, fears and hopes, because from the industry side, there is always the wish to have like more, more more, and having less responsibility. But at the same time, the data custodians really have to keep in mind that there is value generated, not for them, but actually for the participants in the ecosystem as well. Outi outlined, there is an excellent study that we did with an industry partner, we really tried to look for an innovative way how to stratify patients using genetic information, and not just stratifying for prevention, but actually secondary prevention, and also use this genetic scores to actually stratify patients who would benefit from novel treatment. While this work is still ongoing and it's actually replicated as we speak with the THL partners, I think that's a very good example how the knowledge platform brings together the question, and the need from the industry side, a it's then supported, and executed by the data custodian, based on the real data, not just some models. As Outi highlighted, early days, we all hope that these kinds of networks become more common, because they really bring benefits for everyone in the long term and benefit the patients.

Sirpa Soini 16:30
And I could also comment on that, that even though, as Outi mentioned, that this has been a learning experience, and we have enabled due to them all the information we've got, and understanding the needs of the industry and collaboration, so we have been able to re-focus on certain of our plans on how to improve our services. So this is very valuable for us also to improve our services, because of course, we must need what are needed from us to be able to serve the biobank users as fit as possible. And like Tonu said, always we just have to think of the end user, or the research participants, what things we are doing are benefiting also the whole society.

Outi Törnwall 17:13
Exactly. I think the biobanks are actually evolving to the next generation soon. THL and Estonian Genome Center are biobanks that actually, they don't harness only the samples, they actually have the data as well, whereas many biobanks still just have the samples, and they're struggling to transform to the data side as well. This is important in that, that it's really something that is happening as we speak. And like you said, Sirpa, that's excellent that these lessons have been taken on how to evolve the biobank, or how to respond to the needs not only of industry, but also for academics, which have been done for years and years, but now also industry. That's great. And I could also think that Tonu, we should maybe find ways to collaborate other ways as well, to think what we could do together and what kind of studies we could serve together. So we could also think of where just the Baltic Sea across so we're very close, and we have many similar features THL Biobank, and I think because we're also a national collection, basically.

Tõnu Esko 18:17
Yes, indeed, and I think that also puts us apart, The Finnish Biobanks, THL and Estonian in this that we, that actually the patient or the citizen comes first, it's not just about collecting samples, but actually it's creating value and insights, so that it could feed back into the healthcare system, and hopefully, we all will have a healthy, long life. But if we have mentioned a lot of how we would like to work with the industry, and how we have had some successes, are there are some key advice, or key points that we would like to highlight for others, so wither, have some data themselves or some industry partners who would like to get access to those samples, or data associate. What three advice points for our colleagues globally?

Sirpa Soini 19:13
Well, one thing I think is sure, I've heard that many biobanks don't serve industry at all. So even the informed consents are strictly limited to pure academic research. And I think it might be detrimental for research, and also for research participants, ultimately, because industry needs much more and much better data, and much more rapidly than before, and also samples, so I think instead of trying to totally ban industry collaboration, I think they should try to find ways how to do it, and have clear strategies and policies, open policies, and how to collaborate, how it benefits both parties, how it brings benefits for the whole society, increases and accelerates the new drug development and also other diagnostics. I think colleagues should not be afraid of industry collaboration, but the policies, there should be absolutely transparent and clear policies. Because for instance, I can say that in Finland, we've had some bad media attention due to public private collaboration in Fingen, even though it's totally unjustified, because we've been very transparent. But people are very sensitive about this issue, so therefore, it's important to be as transparent and clear as possible.

Outi Törnwall 20:31
Exactly, I could echo that great advice, Sirpa. And there are definitely ways to do this collaboration in such a manner that no data is stolen or misused. It's used in a proper purpose, and that really benefits the patients. One advice that I could give, now, this is more from the industry side, because I work there currently. The key really is to, if the biobanks want to be part of industry driven research, is to be able to find that data that they have. So really, it's all about actually time, timelines to what is available. Most of our time, when we collaborate with the pharma industry, trying to find those data sources that they would need, is spent on actually translating that research need into patient numbers, patient data that would be available, those data points that could be used for that research. So that takes a lot of time. And if there's biobanks who are willing to take that step towards collaborating with industry, take care of that you belong to a network or are internally able to, software wise and expertise wise, to really be able to bring those numbers fast, translating that research need fast to patient numbers and available data.

Tõnu Esko 21:56
Thanks Outi and Sirpa, and I again, need to agree with both of you that it's really crucial to have the processes in place, because in my experience, that's one of the main reasons why industry is rather reluctant to actually work with biobanks and hospitals, that all the processes just take enormously long time, getting the approvals, or as Outi highlighted, just an understanding of what are actual needs in the biobank. So the speed is really a crucial thing, if the biobanks could move two or three times faster in their processes, there would be two or three times more industry funded research, just because the industry needs to move fast. That's even more crucial if the worldwide collection chooses to work with startups, the small starting companies are very often the most innovative and developing transformative technologies. They have funding for the next six months, maximum 18 months, and if getting an ethics approval, or whatever board approval takes a year, and then more to crunch the data for the analytics, it's just not feasible, so really to have the processes in place, but more, it's actually to understand the work with industry, because, as Outi mentioned, one thing is translated to numbers or the research questions into the numbers. But I think from the academia or biobank side, it's also trying to understand what is actually the core problem, or request of the industry partner, and then responding according to it, because very often we get lost in details, but we don't understand the really big questions. Here, I would like to close this very exciting discussion. I guess we could all talk about biobanks and data for the next three hours, but we only have half an hour. But I have learned a couple of new things, and I hope Outi and Sirpa as well, and now I give it over to Ellen to close this podcast.

Ellen Sukharevsky 24:13
Thank you, Tonu, and thank you to all of our speakers for joining today and to everyone for listening. Speakers, do you have any final comments?

Sirpa Soini 24:20
Thank you very much for this interesting discussion. It was great to talk with you, Tonu and Outi, and thanks for the invitation, and let's hope that many people get inspired during the European Biobank Week about this.

Outi Törnwall 24:34
And it sounds like Estonian Genome Center and THL might find some ways to collaborate now after this interesting conversation. I hope it will be a fruitful collaboration and also happy to talk about data partnerships with other biobanks. There are such innovative biobanks that want to take that route with us, with industry.

Tõnu Esko 24:56
And I would add that I strongly believe that over the next years, like 5, 10 or 15, genomics will be a crucial part of any healthcare system, so every citizen will soon have their own genetic profiles, and they will be used on an everyday basis in healthcare. So the earlier we start to prepare having infrastructure to manage it, the easier it's going to be in the long run. So, thanks.

Sirpa Soini 25:23
Absolutely, I believe that too. And as soon as we have ways to really use that data as well for the benefit for everyone, the sooner the better.

Ellen Sukharevsky 25:33
Great, thank you everyone for a wonderful discussion. To our listeners, please check out more information on our Global Data Partner Network at https://www.BCRQUEST.com, and to connect with our company and learn more, email sales@bcplatforms.com, or visit our website https://www.bcplatforms.com. Thank you everyone, and we hope to stay connected with you.