Proper organization and data stewardship for optimal social impact
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Best Way to Contact Dawn and Bob:
dawn@lunadna.com
Bob@lunadna.com
Saul Marquez:
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Saul Marquez:
Welcome back to the podcast. Today I have the pleasure of hosting two wonderful guests. First I have Dawn Barry. She is LunaPBC’s president and co-founder. She’s an esteemed genomics thought leader and veteran of the San Diego biotech industry. She spent 12 years at Illumina Inc including as the vice president of Applied Genomics and leading pioneering teams in preventive health screening nutrition security and transplant diagnostics. Dawn was a co-founder of the Illumina Understand Your Genome symposium which is now owned by genome medical. From there Don embarked on a new journey to reshape health, research and engage individuals to advance science the other health data. She co-founded Lumina DNA, a community owned health and DNA data platform and currently serves as the president of LunaPBC, a public benefit corporation who manages the Luna DNA platform. I also have Bob Kain with us today. He is Luna PBC’s CEO and co-founder. Bob is a renowned pioneer in the field of genomics spending most of his career growing Illumina Inc. Pre IPO from 30 employees with no revenue to a burgeoning workforce of over 3000 employees and one point four billion in revenue. Bob came out of retirement following a 15 plus year career as a Chief Engineering Officer at Illumina to co-found Luna DNA the same company with Don. And so it’s a true privilege of having both of these thought leaders on the podcast and also business leaders to dive into their thoughts in this space. It’s going to be a fun one and just want to give you both a warm welcome and an opportunity to fill in any of the gaps of your introduction and anything that I may have missed that you want to share with the listeners. Welcome.
Bob Kain:
Thank you, Saul. Now that was perfect.
Dawn Barry:
Thanks Saul, great to be here.
Saul Marquez:
Outstanding. It’s a pleasure to have you both here. Now I’d love to hear from both of you. What got you into the medical sector?
Bob Kain:
Hi. So I’ve been in genomics for a few decades and most of that time was spent trying to reduce the cost of DNA sequencing in order to increase the scale and enable larger and larger studies at some point around 2012, it became clear that the cost was going to break a thousand dollars a genome and I and many others started looking at what were the other bottlenecks and enabling those large health discovery studies. We realized there were a couple of things involved with that. One was the siloing of data, large amounts of data are needed and if they’re stored in separate places then that’s a challenge. And the other is how individuals are engaged in order to get their health and medical data personally from the individual. So around a couple of years ago, a solution came up from another co-founder David Lewis and the solution was so compelling that I decided to come out of retirement and help form LunaPBC.
Dawn Barry:
And I’ve always been motivated by the opportunity that you know everybody should have a clean bill of health and so I’ve always been in genomics my whole career in this wonderful opportunity to leverage the organization and potential predictability of genomics to make health care more preventative, more predictive and make health care more specific. So while Bob was working inside Illumina, making the data, more affordable, faster, more accessible. My passion has always been bringing it to the individuals and so breaking these silos. The idea of inverting the model and putting people at the center as the best curators of their health profile and giving them an opportunity to share that data for research was extremely compelling and that’s why we’re here today.
Saul Marquez:
I love it. Truly fascinating work. And the burning why behind both of your your reasons is a tribute to really the success that you both have had in this sector. So definitely love that you shared that with us. I mean, Bob, it took you out of retirement and now you’re back. So it’s a testament to the excitement right.
Bob Kain:
Right. Retirement is overrated.
Saul Marquez:
It’s boring. You don’t want to retire. There’s too many fun things happening in health care. And Dawn, your love for bringing the technology to the patient, connecting the silos is something that really resonates with us at the Outcomes Rocket. And what we do so I love to hear your thoughts and you know it could be Dawn or Bob, either one of you could take this one. What’s a hot topic that needs to be on health leaders agenda today and how are you all addressing it at LunaPBC?
Dawn Barry:
So a hot topic whether it’s health care or beyond is truly data stewardship and specifically who owns the data what is control of the data mean what are the opportunities and challenge it. And like I said it’s everywhere from health care to your consumer data to your Facebook data etc. But as it relates to health care data you know this idea it’s kind of a scary one that that data is the new oil and we really want to work against that. So oil the analogy is that it’s scarce it’s finite. Only the wealthy have it and it’s a symbol of power. We really need to invert that idea as well. At Luna, we believe data is plentiful. What’s not plentiful is the proper aggregation and organization of that data and that’s a challenge we’re here to solve. It also should be used frequently. You can ask infinite questions of data especially properly organized and aggregated data. It is accessible especially as we invert our thinking and recognize people with the opportunity to own and control their data. And frankly as a symbol of power we need to put that power in the hands of individuals and allow them to permission their data for their greater good in our case of research. And so really thinking about proper data stewardship for optimal social impact, the ability to protect the privacy of those individuals but allow an opportunity to keep that data connected to the individual presents an awesome opportunity to reshape how we think about research so we can start getting into patient reported outcomes and real world data and continuous data streams so that we’re not always studying what happened, what broke but we can have an opportunity to see when things change so that in fact we can start discovering more predictive biomarkers or digital biomarkers of health and so data stewardship should be on every medical leader’s mind every every institution that’s holding data and say “Are we are we doing the best we can to impact society with our data stewardship models?”
Saul Marquez:
Yeah some interesting commentary there, Dawn and you know it’s interesting I love that you took us deeper into this. This snippet that you hear a lot and see a lot you know that data is the new oil. It’s very surface level and you obviously have given this deep thought. So I appreciate you adding some distinctions there to this idea and really highlighting that it’s the opposite that’s true. Bob, I’d love to hear from you. Maybe some examples of how the company is creating results and improving outcomes by doing things differently.
Bob Kain:
We are early in our existence and we just want to qualify by the SCC in December to offer stock shares in return for data. So data is considered now a currency by the SCC in our offering so that in itself is a breakthrough.
Saul Marquez:
It’s interesting.
Bob Kain:
Additionally another breakthrough is that we’re really helping to change the paradigm on how we think about data the idea that all of us individually provide unique value to discovery and that we need to band together in order to really mind that value at a high level and to be able to get the missing information in the database is a new paradigm that it’s starting to catch on. We were founded on that about 18 months ago and if you look around at a number of other companies that message is really starting to resonate. It’s resonating for instance with rare disease foundations and so we signed an alliance with the genetic alliance or a partnership. And we are now going to take over the management of their patients data so they recognize that the data is not at theirs and that the management, the stewardship, the organization of the data is an activity that is necessary to drive discovery. However if we can take it over for them that means that their members will receive stock shares that burden will come off of their shoulders and that data will be used for other greater good activities down the line.
Saul Marquez:
That’s very fascinating and if you think of the management of data and typically you don’t think of that as something outsourceable all something that you think an organization should dive deep in and do themselves. But the reality is that not everybody is an expert in healthcare is an expert in data management. So I think it’s fascinating that you guys have begun to do this and in particular the SCC approval for data is currency. What else can you tell us about that? I mean that I think many listeners including myself are being introduced to this idea and I think it be worth diving in maybe a little bit deeper.
Bob Kain:
Sure. So the idea is that our personal data is worth something and we own it and we should get attribution if we are going to contribute it and so we went to the SCC and requested that they recognize the value of that data and that we were qualified in order to provide stock shares for certain types of data. So we have a table of multiple different types of data whether it’s the H.R. records, wearable information, your human genome sequence or your microbiome sequence. Each of those has a value that we have assigned to it. And when individuals contribute that data and can send that data to be used at a population level securely for studies then they receive those stock shares. Those stocks will then help us calculate dividends. And so we’ll use the structures to understand when money’s made and commercializing this data with pharmaceutical companies for instance how to calculate the dividends that will flow back to our community.
Saul Marquez:
I think it’s brilliant. What a fascinating topic to discuss and kudos to you and the team over there for thinking this up. Can you share a time when there was a setback and Dawn or Bob either one of you can take this one. What you learned from that setback and how it helped the company today?
Dawn Barry:
Yes you know, early in 2018 what I love about this team is we’re always focused on what are we trying to achieve and recognizing tools as how you get there. And so operating from what we wanted to achieve, we wanted to fix historical issues of imbalance of value with data usage so people feeling like they’re not cut into the value created from their data and there has been tremendous value created from data. And so operating from that principle, we thought one tool by which we could accomplish that means was digital currency. And it was the beginning of 2018. It was quite hard. It looked like it was very fluid, very easy, low overhead – something we could implement with ease. However shortly after thinking about that the SCC started to comment on concerns about that space on a number of levels not the least of which was treating as commodity, security, utility and then what oversight mechanisms they would use to make sure people were safe and using those instruments. And so with that concern and then also as we engaged in market research individuals felt like it was in a trust based instrument to use. So we as a team threw that idea away and very quickly said “okay, what are other means that we could accomplish the imbalance of value?” and Bob came up with the SCC idea which we boldly pursued took us a little longer to implement us as a business but having that precedent setting move under our belt we’re pretty proud of that and we find that to be a trust based instrument. So that was an example of I guess you could call a mistake or a failure. But the bright side is if you stay focused on what you’re trying to achieve and recognize your tools it’s just that something in your tool belt it’s OK to throw away certain tools and implement others to achieve the same means.
Saul Marquez:
Dawn, I think that’s such a great point and I want to pause there just for the listeners to digest that and think about what you’re doing in your own business. This idea that – what is is the focus and the how the tool should not be your what. And I think that’s a really great point to highlight there Don. And yeah again you know. So so one of the things that I’m curious about is now that you’ve created this this new way of data for shares, are you guys using blockchain to account for that?
Bob Kain:
We are looking into the use of blockchain. We have a couple of partnerships to investigate the utility of the blockchain technology. It is new. There are a lot of attractive features to the blockchain but we have a couple of questions we want to answer. We’ll answer those questions in the next few months and make a decision. But the blockchain for instance could be used to create a ledger two documents. Share ownership and it could be used to create a ledger that documents who accesses our database to drive discovery thereby providing transparency to our users and creating sort of a tamper proof ledger so that people can really see that we’re trying to uphold the trust that they’re giving us.
Saul Marquez:
That’s fascinating, truly fascinating cutting edge work. You guys are both involved in here. Let’s take the other side of the coin. So you shared the setback that now has become the centerpiece or at least one of the centrepieces to the work that you do. What’s one of the proudest examples that you could highlight today, I know it’s early on but what would you want to highlight there as one of the proudest experiences you’ve had so far?
Bob Kain:
That’s an interesting question because I think this was a turning point for me. I spent most of my life in research technology development and engineering and genomics tools and the tools initially helped drive research really interesting research about the human genome and the genome of important species to human. However there was a point in time when Howard Jacobs at the Medical Center of Wisconsin was treating a little boy named Nick Bowker. Nick was diagnosed with early onset disease often called failure to thrive and many times children go through years of trying to discover what throngs is called the diagnostic odyssey. And then they’re giving a diagnosis that really says I don’t know what’s wrong. Many of these children don’t survive. And so Dr. Jacobs was the first person to sequence one of these children and he sequenced Nick Bowker. He was able to find a and heir and Nick’s genome that really led to a diagnosis for the disease. It was a diagnosis at the molecular level that led to a very specific treatment that was tremendous for Nick and it allowed Nick to sort of move forward and get over the issues that were contributing to his failure to thrive. And so what he had proven was that for many of these children with early onset diseases causing diagnostic odysseys there was likely a genomic error that occurred when they were born. And so if you can sequence these children and identify that error then we can save these children and many other children were sequenced after this and now Rady Children’s Hospital in San Diego has set up a genomic medicine institute specifically to sequence children like Nick and so for me that was a turning point when I realized that we were moving beyond interesting science and we were really moving into how we can help human beings.
Saul Marquez:
That’s brilliant. And what a great example to highlight the power of this precision medicine and using the genome to help us better address and diagnose diseases. Tell us about an exciting project or focus that you guys are working on obviously everything but you had to zoom in to one particular thing what would you say that is?
Dawn Barry:
I would say that’s the genetic alliance partnership specifically the integration of their peer platform that’s the platform for engaging everyone responsibly it’s award winning platform that allows any community. It’s typically disease communities and patient advocacy groups but truly in the future any community can come together for a research question or an opportunity create study questions start taking surveys leverage that genetic alliance institutional review board etc, and then start collecting data both to help themselves on their patient journey but by collecting data and working with Luna to structure it properly for research. They also have the opportunity to help the next patient. And so we’re very excited working to integrate the platforms listen to all of the forty five disease communities they have on that platform so that we have a system that works for everybody and then it’s extensible into the future again to help those patients but also to help the next patient in sharing data for research.
Saul Marquez:
That is definitely exciting Dawn and you know for the listeners maybe for them to get some clarity and a call to action. Who are you and your company looking to have outreach from? What companies, what types of individuals maybe that’s worth highlighting right here as a call to action for folks listening.
Dawn Barry:
Sure. We philosophically, we believe everyone is unique and they are actually unique. When you think about it a genetic level. But we believe everyone is unique and has something to provide to a platform like this. So historically research has been retrospective and based on understanding why somebody is sick. But wouldn’t it be awesome to study why somebody is well and their journey of wellness and when and if something goes wrong being able to study that. So everybody has something to give. This is a consumer facing platform. However there are opportunities to work with other businesses and institutions to bring their individuals into the platform. So for example we are just in discussions with population health programs, clinical labs, academic institutions, even direct to consumer product companies who are recognizing that their data stewardship models can maybe better serve humanity by working with us and giving individuals the opportunity to permission their data for research. So there’ll be some direct to consumer outreach but they’ll also be partnerships with institutions to help their individuals make the most of their data.
Saul Marquez:
Fantastic. Thanks for clarifying around that. And if they’re interested in reaching out and collaborating where do they do it?
Dawn Barry:
They can reach right directly to me I’m happy to work with them and discuss their goals and talk about how they can start integrating into the linear any platform.
Saul Marquez:
Outstanding and we’ll have a chance folks stick around. We’ll have the best way to contact Dawn and Bob here. Getting into the lightning round, I’ve got a couple of questions followed by a book that both of you would recommend to the listeners? You ready.
Bob Kain:
Yes.
Saul Marquez:
Here we go. What is the best way to improve health care outcomes?
Bob Kain:
I think the best way to outcomes is to engage the patient. Find out what’s unique about that patient and that patient’s condition and then define a treatment based on that uniqueness.
Saul Marquez:
What’s the biggest mistake or pitfall to avoid?
Bob Kain:
The biggest pitfall to avoid in discovery is the transactional approach to dealing with individuals because you don’t get engagement from that individual and right now you miss a lot of information that you could acquire from that individual. Do they follow the doctor’s recommendation? What is the outcome from that treatment? And how do they feel a month later or two months later? And what was the experience that they had through that process? And that’s very valuable information that is not being collected today or considered in treating patients.
Saul Marquez:
How do you stay relevant as an organization despite constant change?
Bob Kain:
I think Don answered that earlier we stay focused on what our mission and purpose is what our vision is, to sort of break down these silos, engage individuals and bring the data together and we are able to pivot as we need to pivot to better accomplish that mission and purpose.
Saul Marquez:
What’s one area of focus that drives everything in your company?
Bob Kain:
Driving societal value or creating societal value.
Saul Marquez:
Love it. And these last two I’d love for for both of you Bob and Dawn to share the first one is what is your number one health habit?
Bob Kain:
I’m type of daily exercise.
Dawn Barry:
Yeah I’m a vegetarian so that’s my my health habit.
Saul Marquez:
Love it. And what is your number one success habit.
Bob Kain:
I think staying focused on the end goal and being persistent but guarantees you’re going to fail if you’re persistent in pursuing success. Your chance of being successful goes up by an order of magnitude of it.
Dawn Barry:
Think you’re professional and personal passions have to intersect you have to bring your heart and your brain to work every day and I think you’re in the best position to succeed when you have intertwined personal and professional mission, goals, aspirations, and values.
Saul Marquez:
That’s a great one, Dawn. I really love that. So really appreciate y’all getting through the lightning round. You did a fantastic job. I’m wiping the sweat off my forehead.
Saul Marquez:
You did awesome. You did awesome. Appreciate that. It’s always fun. So I’d love to hear a book recommendation for the listeners from both of you.
Dawn Barry:
It’s a little old now but I love the book Abundance by Diamandis and Cutler. I think it’s what I love about it is you know for a lot of us who’ve worked in technology. You think about the technology and the product and the go to market. But but really what can technology do for society anchoring it back to the true impact in society. That book does a great job of connecting everything to the bigger impact in humanity.
Saul Marquez:
Great recommendation.
Bob Kain:
I would recommend Homo Deus by Dr. Harari. The book really takes a look at where we are today and how we got here over the last decade and the technologies that sort of drove that progress. And then it basically forecasts out into the future near-term and a little further out and then gives a provocative look at what our future might look like based on where these technologies are going in and ask some very important than provocative questions about what we think about that future and what we might do to make it a better future for everyone.
Saul Marquez:
Some great recommendations Bob and Don really appreciate it. Folks go to outcomesrocket.health and in the search bar type in Bob and Dawn or type in LunaPBC and you’re going to find this entire episode there, a full transcript as well as a short notes and links to all the things we’ve discussed. Bob and Dawn, I’d love if you guys can share a closing thought and then the best place for the listeners could get in touch with you or learn more about your work.
Dawn Barry:
Sure. So I think it’s it’s time to invert the research model and promote individuals from study subjects to research partners. That is a guiding principle of all we’re doing there. With the technology today in a system like when a we can protect privacy and have continuous connection to individuals so that we can start to imagine a stream of of life data for study. We can do better than the retrospective research that’s snapshots of people’s history that’s put together by individuals that aren’t them people are the best curators or their health profile. If you protect their privacy, give them control, transparency, shared attribution, we can invite individuals to really change and accelerate research. This is a community effort. It’s going to take the scope and scale of a community and it’s time to bring in a community and to research in a meaningful way. I can be reached at dawn@lunadna.com or on Twitter @dawnbarryDNA.
Saul Marquez:
Outstanding and Bob what’s the best place for folks to follow you?
Bob Kain:
Bob@lunadna.com on Twitter at @BobKain.
Saul Marquez:
Outstanding. Well this has been a fascinating discussion. I know the listeners are probably wondering more so go to the go to the page find out some more about Bob and Dawn and the company LunaPBC. It’s definitely just scratching the surface so Bob and Dawn, thank you both for spending time with us. Really appreciate it.
Dawn Barry:
Thanks, Saul.
Bob Kain:
Thank you.
Thanks for listening to the outcomes rocket podcast. Be sure to visit us on the web at www.outcomesrocket.com for the show notes, resources, inspiration and so much more.
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