Episode 16 transcript: The genes of a healthy startup with Patrick Short of Sano Genetics

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SPEAKER: M1
Welcome to scaling failing and prevailing. A podcast about helping startups and corporates learn from each other through great conversations. Hi on James Parton. I run the Bradfield Center in Cambridge where we help tech companies scale and hosted hundreds of free tech events every year. Previously I’ve worked in corporate innovation Telefonica and O2 and I’ve experienced startup to IPO with San Francisco based Twilio.
SPEAKER: F6
And I’m Adelina Chambers. I’m known as the geek whisperer. I work in tech startups in corporates helping geeks understand leaders and vice versa. I also help startups from Cambridge University secure investment. This episode is really exciting because this is the first genomics startup CEO we have on the show and I personally I’m really looking forward to having this conversation with Patrick because I want to hear more about what he’s done since the billion pound event panel gave him advice on how to grow his membership and to listen back to the billion pound scale up event episode that we did.
SPEAKER: M6
That was August set aside Episode 13 so you can hear both from Patrick and the other two startup founders that the pitch to that event. I’m I’m particularly interested in talking to Patrick about his experience of entrepreneurship at the university. So both Patrick and his two co-founders are all graduates of Cambridge so be really interesting to the kind of inside perspective on you know their kind of background at Cambridge how they got to forming the company.
SPEAKER: F3
And for me I’m also interested to hear more about how come he became the CEO of a startup. Considering his background is in academia so I’d love to hear his experience and how he got into it.
SPEAKER: M4
So well. Patrick thanks so much for joining us today. Would you mind just describing what you do in a few words.
SPEAKER: M5
Yeah it’s great to be here. Thanks so much. Yeah. So I’m Patrick. I’m the co-founder and CEO of SUNO genetics. We’re a startup company based here in the Bradfield center where we’re recording myself and my two co-founders will in Charlotte. We did our pitches at the Sanger Institute at the University of Cambridge and then started the company which is based around connecting people to research and genomics and personalized medicine. We have a real ethos around giving people control of their data and doing research in a very patient centric way. So I personally came over to Cambridge about five years ago to do my part. I’m from the U.S. originally grew up in North Carolina and studied math and biology there. I originally started studying math and business but I didn’t enjoy my business classes so much so I switched to biology and now I’m kind of back into into business. But I’ve been living in Cambridge last five years and adopted a dog a couple months ago so settling in here for for a while I said Yeah.
SPEAKER: F4
Patrick you and I met because you came to the billion pound event in February this year and you presented a really interesting problem which was if I believe how do you get from 2500 members to two million without a huge budget because we’re just a little startup and the panel had to give you some ideas for that. Can you tell us a little bit about what ideas you the panel give you and what did you do with those ideas now six months later.
SPEAKER: M5
Absolutely said the the I thought the event was really great and unique for a couple of reasons most pitch event Keep going keep going.
SPEAKER: F5
Tell us how we’re gonna get a cup of coffee.
SPEAKER: M5
Yeah this was there’s every twisting way read this but most there’s a lot of pitch events in Cambridge and are often competitions and there’s you know and there’s nothing wrong with competition there’s a winner and loser but it does change the dynamic a little bit because nobody’s able to talk about the challenges they have it’s all up and to the right and what was good about this event is there is there are a lot of smart people in the room panelists from startup companies that have made it big here in Cambridge but also large companies try to help you solve the problem for us. The challenge was and to some extent still is we’re a two sided company. We have patients and patient organizations on one side that work with us to try to get involved in clinical trials or get access to research and then on the other side we have researchers that we work with to try to help them analyze genetic data from these patients or in some cases generate new data as you can imagine the researchers are interested in a platform that has a lot of people and the people are interested in the platform that has a lot of researchers. We have a classic two sided you know two sided marketplace or business problem. So what I was asking the panelists about that day is you told them a couple of the ideas that we’ve already been working on and asked for some ideas of their own what has been really working for us well in the last three months or in three to six months has been a partnership. So we work with patient organizations as well as other companies genetic testing companies digital health companies that already have existing base of people that are interested you know either they’re they’ve come together because they have the same condition in a support group or maybe they’re interested in genetic testing and they’ve purchased a test somewhere else but now they’re looking for something else to do to support research or to get involved in clinical trial if they have you know we tend to focus on rare and chronic genetic condition so tend to be more serious conditions so people are looking for you know looking for help in many cases are looking for insights.
SPEAKER: M4
And is that is that going so well that you’re starting to think about that as your primary way of acquiring people into your data bases or are you still going to maintain like a direct to consumer model as well.
SPEAKER: M5
Yes. So we have it we have a couple of different ways that people find the platform some have already done a test and they upload their data to the platform. Some people actually purchase a test from us. It’s something we started do recently because some people logged onto the platform. They didn’t have a research project that was a fit for them but they liked our ethos of you own your data. You have control of it. You can support research so we were getting inbound requests and started to offer these tests. But the I think the partnership model is a really attractive one because you know because these people are already organized around themes or condition that they’re affected by so you’re not you don’t have to pay thousands of dollars to Facebook to find people which you know I hate from a marketing perspective as to just you know nobody likes to see Facebook ads so to throw hundreds or thousands of dollars at Facebook to find people instead you can work with a patient organization whose job is to help their members you know they help filter out the important stuff from the noise.
SPEAKER: M3
So I do think it’s a you know it’s a big part for us another. Besides companies and patient organizations the next big step for us is to try to partner with healthcare systems like the NHS or they’re none of this more fragmented in the U.S. and it’s different in every country in Europe. But that’s another group of people that the health care system tends to be focused on solving the problem for the people now. Yeah and less so on involvement in research. So working together with them to say you know can we can we make research opportunities available to people. And then it’s no longer the G.P.S. problem. They’re so busy they don’t have to worry about you know matching people with research projects they can focus on the right. They’d rather do. I mean.
SPEAKER: M4
It might be an incorrect perception but that feels like the prize is much greater. But the kind of lead time in landing those relationships is going to be sizable. So as a young company I guess you have to balance your burn rate with how much time you can invest into those kinds of relationships right.
SPEAKER: M2
Yeah exactly right. And to be realistic on just because we think it’s the best way to do it the health care system comes with their own you know their own set of ways of doing things. So we have to be you know we have to have you know have a big dream and vision and think that there’s a better way to do it but also be practical and that the you know the we’re not going to get personalized medicine quote unquote overnight it’s going to come in small steps and we want to be the partner of choice for these kind of organizations but can expect you can expect everything to change overnight.
SPEAKER: M3
Yeah.
SPEAKER: F2
So could I just clarify so when when the panel advising the panel gave you one of the things I remember from poppy Gustafson was that you. She said just focus on getting that mess mixed member and all kind of you know you have 2000 now. So just listen it’s all about getting the next member and we were talking I remember I think I mentioned about what made the current two thousand people join. Can you tell us a bit more in terms of like something the panel told you and something you’ve been able to do about it.
SPEAKER: M3
Yeah. One I mean one thing we’ve done I think pretty well since the beginning as we’ve talked to participants on the platform people who’ve joined as much as we possibly can. So you know I have a couple of phone calls a week with people who’ve joined because it helps for us to actually hear from them why they joined what they’re interested in what they found challenging as well. Because if you if you have if you just have this imagine problem in your head but aren’t actually talking to people and there’s a lot of things themes that have popped up people have off with our platform it’s people that are affected by a genetic condition they’re frustrated by not having answers from everything that they’ve tried. And and we have to balance between being scientifically rigorous and saying that there isn’t you know genetics isn’t always going to provide an answer. But also helping to match them with the high quality research that might find an answer within the next year or two months a year two years three years. And so a lot of it has been for most people the the main refrain we get is this is really great. You know I’ve. I’d love to match with a research project basically some people they match straight away but other people don’t. So it’s really you know back to this marketplace or two sided problem if we have interesting research projects that are applicable to people then you know then they have a great experience on the platform and that feeds into our marketing as well where we don’t try to get anyone and everyone on the platform we try to reach out to people who are fit for the research project. Otherwise you know you’re just collecting email addresses and people sign up and they’re not getting anything out of it. And for us that’s not you know that isn’t the most sustainable way to grow I want everyone who joins to have a good experience whether it’s to learn something about themselves through one of our reports or join a research project or both.
SPEAKER: M4
I like waiting on where you spend the most time you know just having a bigger pool of participants attract the research project. So was it vice versa or a yes. I think equally between the two.
SPEAKER: M3
There’s there’s kind of three broad classes of research projects that we’re working on. So one is recruitment for clinical trials and some of the most interesting projects we’re working on our clinical trials that involve genetic biomarkers so they’re recruiting based on a genetic feature. And that’s been really good for us because we have a bunch of people who have genetic data so we can much more efficiently screen people based on their genetic data whereas if you if you do it if you genetic test people afterwords and it’s a lot slower and more time consuming the second is there are a lot of companies working on cellular models so they are interested in collecting blood from someone and turning it into a stem cell and using that to test drugs in high throughput for example. This is a again you need specific targeted people. And and for us it’s really important that the participant in these projects know you know they know what they’re signing up for they haven’t just given a blood sample decades ago that’s now turned into a you know that’s turned it into a product somewhere there you know it’s very important to get the consent and informed consent right on this so those are the two that we’re doing the most of now in the future there and this is what a lot of the large pharmaceutical companies are interested in is analyzing data on a very large scale. So hundreds of thousands in couple of years would be millions of people that they can put into their drug discovery pipeline. They use the genetic data to try to optimize the drugs that they choose. And we’re not quite at the scale yet to be able to do those kinds of projects but that’s where we’d like to be able to move in the future as we grow and you enrich your data with other data set.
SPEAKER: M4
So was it purely your own.
SPEAKER: M3
Yes. So it’s it’s enriched with a lot of other there’s a genetic says for it for historical reasons. Very open open data driven community says a lot of open data that we can use to annotate the information that we have and enrich it. So it’s very good from that perspective. One of the I guess one of the double edged swords of the openness of the field is that there’s a lot of anonymous eyes and aggregated data around but there’s very little it’s hard to get data on an individual level. And that’s kind of where we try to come in because if you want data on an individual level in my opinion at least you have to have the consent model and that thing nailed down really well. If you have if it’s a little bit Facebook style where you don’t know who has access to your data and it’s kind of floating around out there then it makes people really uncomfortable so we’re you know we’re trying to take the openness and marry it with the patient centric part so you can get access to both large scale data but also it’s actually attached to people at the end of the day so you can improve their health not just you know understand the aggregate and what trauma is data. Yeah.
SPEAKER: F2
So from what I heard through the grapevine Patrick you have momentum now and your membership has increased significantly. Can you tell us a bit more about how you did that perhaps after the event or any of the tips that you took on board.
SPEAKER: M3
Yeah definitely. So so from the event there was you know there was advice around speak closely to the members of the platform understand why they’re there in the first place and double down on them. The other was about using you know using the power of the story that we’re working on something that’s really interesting and we’ve had a couple of you know a lot of great press coverage which has been no press coverage doesn’t really increase the amount of people using the platform substantially but it does help get the word out there about what you’re doing. I think what has helped us gain momentum the most has been whenever we have research projects that is the that’s the catalyst to our growth because if we have a research project then it’s a real impetus for people to join because they get something tangible out of it if we try to do the reverse where you get people onboard and promised them that a research study may someday arrive. Know it’s it’s a lot riskier and a lot less satisfying. So we start with we’ve had a three or four really interesting research projects in the last couple of months that we’ve been able to to leverage to find patient organizations and people to say this is exactly the fit for you. Are you interested in joining and then they can opt in or opt out. So that part and hopefully as we grow the more people we have the easier it is to to fulfill research projects and hopefully there’s a sort of flywheel effect going just drill into the press coverage for a second.
SPEAKER: M4
I think a lot of people you know the whole world of PR is a bit mysterious and you know people are unsure about how they can get themselves you know press coverage. So was this something like it was an inbound opportunity. I reached out to you. Did you hire an agency to put the word out. How did it come about.
SPEAKER: M7
Just yes. So we we decided to try to do most of our PR in-house. The reason being we know it can be a little bit mysterious where you don’t you don’t know if you’re working with an you know with an agency for example you don’t necessarily know what’s happening.
SPEAKER: M3
And if there’s success you don’t know why it was successful right. It’s a little bit of a black box thing and we thought that it was important enough to our operations as a company that we would you know we would do the job of getting in touch with reporters if we thought we had an interesting story to tell then we would reach out to them. And you know and if they think it’s an interesting story then they can follow up on it. So we had a couple of weeks ago we were in the part of a story in The Guardian around personalized medicine and this was just after we launched our genome sequencing kits and we had a great discussion with them about how we’re trying to be different as a direct consumer genetic testing company that rather than promising that this test will solve all of your problems. We tried to be very upfront with people that we’re a research company and this industry is still in its infancy. By joining you’re not going to get an answer to all your questions but you’re going to be matched with research projects that will hopefully get us a step. And you’re taking the first step with us on what’s a longer journey of trying to build the future of personalized medicine not a quick fix and I think they appreciated that angle of it as well because the NHS is very there they’re very interested in engaging with personalized medicine yet there’s also a lot of pushback because until you have the until you have the proof that it’s economically viable and that it really works then it can be really costly and you know to roll genome sequencing out. But what the NHS has done really well I think is they’re now starting to do genome sequencing routinely for anyone with a paediatric rare condition because it’s been proven to accelerate diagnosis. It’s much more cost effective than these terrible diagnostic autopsies that parents go on where it takes them years to figure out what’s going on with their their children. So I think the NHS is doing a good job kind of being you know picking the the most important the lowest hanging fruit and it’s good to be part of that story for example.
SPEAKER: M4
OK. So you know in your introduction you talked about you’ve come over from the US to Cambridge about five years ago. So we’ve touched on a couple of episodes elements of entrepreneurship at the university. So we had Andy Neely on earlier in the year. Jerome had some experience of starting up at the university so it would be great to ask you a few questions about your experience being an entrepreneur at the university. I guess the first one would be. Was that your intention when you came to Cambridge to actually become an entrepreneur and start a business or was it more of an academic kind of mission that you were on. How did that come about.
SPEAKER: M7
Yes it definitely wasn’t my intention although it is throughout my research career I’ve had several great role models that do both research and and have spin out companies. So when I was at University North Carolina as an undergraduate I worked in a nanoparticle lab with a guy named Joe de Samoan who’s now running a company called Carbon that does 3D printing and while I was a student in his lab he was spinning out a company every two years and it was a really interesting exemplar to me if you can do great science and you know and spin it out to do something you know something that lives beyond the science paper you know.
SPEAKER: M3
And when I was in my Ph.D. I worked with Matt Hurley’s who’s at the Sanger Institute and he co-founded a company called Angelica. Well you know and is still part of the company and he’s an amazing human geneticist and so it was you know there’s. And he’s primarily an academic researcher so he hasn’t left to work at congenial. But I think he saw and with his colleagues that the what they’d done in the lab or in the research group could have a much wider impact and that commercializing it was a way to take it forward. So I always kind of I guess had I didn’t have the academic mindset that they were two worlds apart. And as you say Cambridge is a very it is a great place to kind of I suppose as a PHC student learn by doing how to become an entrepreneur. So we did Charlotte and Will and I did loads of the Q competitions. So with you know the one of the Cambridge Cambridge University Entrepreneurs student organizations Darren Disney was really helpful to us and helping us to learn how to pitch and how to write a business plan and refine refine some of the commercial thinking you have as a PHC student Charlotte was the president of cute Charlie was president of cute very active in that entrepreneurial scene. And that’s right. And we join so we were all part of St. Edmunds college who had a entrepreneurship competition and through that we got onto the Judge Business School accelerate program which as some of your listeners may know is is a kind of accelerator program that you can really do alongside a degree because it’s one it’s one day a week. You work with mentors and it was really helpful for us as well to again just bring that commercial thinking to something that was primarily scientifically driven.
SPEAKER: M6
When did that spark happen between the three of you. Well you kind of you kind of sat around a table and said Okay we should do something like You know there’s this let’s start a company.
SPEAKER: M7
How did you know. Well we we had gone to the CU competitions and worked on different ideas with different people sometimes with each other we were those kind of people that were just you know interested in learning by doing. At some point we we started to work on something relatively seriously together. We kind of saw about six months in that it wasn’t going anywhere. And so we figured you know we basically said this isn’t going anywhere but we have another idea which is we every day we see direct to consumer genetic testing companies getting in the news because they’re selling people’s genetic data and their people technically tick the box but they didn’t realize it.
SPEAKER: M3
And so there’s this whole you know there’s a. My opinion is these companies like twenty three and me there. Their intentions are very good. They do want to move research forward but there’s a little bit of a perception problem with how you know how they pitch it to people and they’re changing and starting to do you know do much better with this the industry is changing. But we saw this as a big problem. We also saw on the research side this problem I mentioned earlier about data tends to be very very static and siloed off in our industry. So there’s that data in the health care system. There’s genetic data from a company there’s no information even on a wearable device and none of this is ever really connected together. And we felt like it would either be connected together by a company like Google or or Apple or someone like that that would pool it all together or it could be connected in a way that’s very patient centric where you own your data and it’s more of you know an API interface to your data that kind of approach. So that was the sort of approach we to take makes sense.
SPEAKER: F3
I’m really I was really delighted to hear about the fact that you said that you didn’t have this kind of mindset that academia and business are two worlds apart.
SPEAKER: F2
Yeah. And I think that’s really important and something it really makes me very excited about the world and the future of of the world when we have scientists like you being interested to be in business. And you know when you when I first heard when you said earlier that you weren’t really interested in the business courses initially it goes to show how doing business is so different than the study of business. So anyone out there who’s studying business and his board please don’t just write off entrepreneurship as a career. But I wanted to ask you what do you think. Is it the fact that you worked with the guy who runs this company called Carbon in the states and the fact they worked for the contracting co founder is that what open your eyes to entrepreneurship as an academic or what was it. Because know a lot of academics who often feel that as a scientist you’re going to business music you’re selling out. And I’m sure you’re aware of that. Yeah. Yeah.
SPEAKER: M3
Yeah I think it’s I think it’s part them but it’s also the a lot a lot of the skills in Cambridge are gained extra curricular they through things like q q tech the judge business school because you know when I was in my when I was in my PHC lab I was focusing on my page D 100 percent I was doing sanga. Yeah. The Sanger saw you know it was almost like a second part time job that we were working on the company. So I was working on my page D and then evenings going to events weekends working on things with Wil and Charlotte. And I think the. But my pitch to supervisor was always very supportive of that. And I think for a PHC student unfortunately a lot of it depends on the you know the vibes that you’re getting from your peers. Supervisor if they’re saying to you if you don’t go to a postdoc then you’re a failure then yeah. You know they’re the they are your you know role model and in many cases for those four years your life. But if you have a supervisor that that has a holistic view of you know we’re in genome sequencing and we get all of our sequencing done by Illumina which is a company that was started by someone here in Cambridge right. And so if you if you think about it one step above that what we do as possible because people take technology and commercialize it. People think about it that way. I think realize that you need you know you need people that are smart and working hard and not just in academia but in all you know in all parts of the industry for it to continue to grow and prosper.
SPEAKER: M4
So so I guess while we’re talking about Cambridge that’s let’s move on to like the challenges that you face growing the company. You’ve obviously decided to base yourselves in Cambridge which I assume is to be closer to the talent pool coming out the university. But I guess there’s lots of other companies with the similar ambition so how to you. Well I mean no one took us through the decision to base yourselves and growing Cambridge then I guess the second part of the question is how do you how do you recruit in an intensely competitive marketplace.
SPEAKER: M7
Yeah for. For us Cambridge was I think a good choice because there’s a huge amount of life sciences talent here. Although we are also pretty software engineering driven company.
SPEAKER: M3
So far we’ve you know we’ve been able to find great people and the there’s some companies I think have struggled with software engineers specifically in Cambridge and ended up moving to London. We have a great software engineer who works remotely from London. So for us we’re now we’re happy to set up a work culture and have a have a operations that supports remote working for example. I think that’s one way that you can and some people are really good at remote working. Other people aren’t. I think in terms of attracting good scientific talent and people to join in general for us it’s really about finding people who are very mission driven. I think you hear startup companies say this a lot but we can’t pay as much as a big company. We know we can offer stock options to you know because I feel like that people should be owners in the company in the same way that we are. So. So we all share success together. But you know many people are not motivated by that. They want to be working on an important problem. And I think that’s you know that’s more important than anything is that if what you’re working on is really important and people can see if you succeed how the world will be different. And I think for you know for a lot of people that’s a really big motivator and that’s what we try to do.
SPEAKER: F2
Well that’s interesting cause that’s one of the things that Katherine Veit who was this recruitment specialist was saying how you get you as a small startup who can’t compete on price with big corporates or even bigger companies than you can actually get the right people for you by focusing on that vision and on those values and beliefs that you have. So that is nice to see it reflected in the day to day.
SPEAKER: M3
And I think I think it’s you can you can learn so much working in a startup where seven or eight people now and everyone has multiple jobs. And if you want to learn that’s you know that’s a great way to do it to figure out what you like to do best and you’re also by being thrown into the fire a little bit. You know you can. You’d be surprised what you can accomplish I think.
SPEAKER: M4
Yeah I mean you you touch on the ethical thing and that’s come up in a number of times I guess you can position yourselves from a PR perspective as being the kind of I guess the you know the good guy and in a in a shady world potentially right. Because you’ve mentioned this a couple of times already in the conversation that the the ownership of the data and the trust around that is paramount in what you’re doing.
SPEAKER: M3
Yeah exactly. I think the you know I do think the majority of companies in this space have good intentions but there they have systems that are that were set up 10 or 15 years ago before people were really clued into the fact that there’s so much commerce that goes around around personal data. So now I think some companies are finding it hard to kind of rip out all of that old infrastructure that was based around not telling people what was happening with their data and shuttling it around and I think we do try to position ourselves as a sort of ethical marketplace or ethical broker between patients and patient organizations and research and there have been plenty of I mean even a month or so ago in the news there was the issue with the with deep mind and Google and the NHS data that they kind of tore up an old agreement and now some of the NHS data may be you know maybe headed back to the US so that you know that it’s a problem that we’re going to continue to face. And I think by we position ourselves value wise as as. Patient data ownership and transparency are always top of the list. So we kind of run anything we do past that first. And I think it’s the way it’s the way anyone in our industry should operate because it gives you a check on if what you’re doing isn’t best for the patients that you’re serving then what’s the way you shouldn’t be doing it basically.
SPEAKER: M4
How do you maintain control. Because the access to those data records is far more like an API interface rather than you ever transferring any data to partners.
SPEAKER: M7
Yes. So exactly so. So at the moment we we have an interface that gives people for any piece of data they upload or that they add they can control whether they want it to be available and anonymized and aggregated format which means no individual data or if they want to be asked every time. And it’s really interesting what people choose based on different kinds of data. But basically if a new request for data comes in then they get an email or a notification through the platform to say you might be eligible for this project would you like to join. And and this might sound you know it might sound like it can get annoying but the volume of research projects is still pretty low. And also most of the research projects are looking for new information. They want to know hey are you still you know you’ve been on the medication for this long.
SPEAKER: M3
Have you experienced any side effects is it working for you. So there is an element of longitudinal data and freshness of data as well that by actually engaging with the participant you you get better data as well because if you just try to collect as much data as you possibly can and then stick it in your database and you know and then shut the door then you miss an opportunity as well to actually you know keep engaged and see how people change over time.
SPEAKER: F2
Well it’s hard to imagine you know that annoying anyway because if it’s about you you know it’s about your health and something really really matters to you. I mean I remember seeing this lovely lady called Sue who’s doing some research into M.S. and seeing hundreds of people online when an article appeared about her in the news saying how can I offer my data to you how can you test this out on me and they were super keen and they wouldn’t have my 100 e-mails from her. So you know and it’s so personal and so important to your life and your quality of life I can’t imagine people being annoyed by it actually.
SPEAKER: M7
Yeah we do a lot of work in rare and rare disease that is what my PHC was based on as well and in the rare disease community it’s challenging enough to get people to work on your condition because it’s often not you know the pharmaceutical companies aren’t always economically motivated to work on it.
SPEAKER: M3
So you know so there’s a there’s an incredible amount of energy and organization that patient groups to say people aren’t going to work on this just by you know just by magic. So we have to get organized get our data together and it’s amazing what you know what a group of a couple of parents can do to marshal the thousand people in Europe that have this particular condition and it’s inspiring to come to work with these groups as well because you can see how much can be done with so little if you have a motivated parent or family.
SPEAKER: M4
So just picking up your comment around the frequency. You know if you if you were working in more of a traditional SAS business or something like that where the marketing team are kind of keeping an eye on the usage data yeah. And you know. Okay so user X hasn’t triggered a transaction in know three week so there’s an activation process that goes back and starts to nurture them and get them re-engage with the product. So if the frequency of these trials is fairly infrequent once you’ve acquired what’s the terminology used as a trial list or a memo. Participant yes. So once you’ve acquired a participant what’s your kind of take on how you keep them engaged for when the next opportunity comes up. Because if it’s a period of time like this they might might even forget they ever signed up and they got kind of dormant right. So what’s your approach to that side of things.
SPEAKER: M2
Yes. So we see that in terms of the users on the platform that kind of key metric that we like to track is how many people are being matched to a research study. Because this is you know this is what’s if.
SPEAKER: M3
If they’re just logging on and not getting anything out of it we don’t want to call that success. So what we’re optimizing for somebody signs up and they join a project that’s relevant to them. But we also give free reports based on people’s genetic data. So there are and these are updated pretty frequent every two weeks or so we add a new report. So there. So there is there’s new stuff on the site all the time for people who are interested in learning more. The research studies tend to be more infrequent. So the average user might have something every two months or so that’s relevant to them. But there’s you know that we have we have a podcast we have our own podcast we do we write a couple new blogs a week and so a lot of people come back because they’re interested in and learning more. And so there’s a balance between learning more and then contributing and then they learn more and then do some contributing.
SPEAKER: M4
So there’s you know there’s a I suppose a give and take and I guess tying it back up some previous conversation around PR if you’re putting content out there it’s establishing you as thought leaders which would then lead to potentially opportunities with press because they’re going to know you guys from the content that you’re putting out there.
SPEAKER: M7
Yeah exactly and it’s also getting back to speaking to our users.
SPEAKER: M3
It’s it’s really useful to hear what what it is that they don’t want to you know that they don’t know about and they want to learn.
SPEAKER: M2
So for example we do a lot of genome sequencing but a lot of the rare disease community is now interested in learning more about RNA sequencing. So this is not in the DNA. You can think of as kind of the you know it doesn’t change it’s the fixed you know your recipe for you know for James or for Adelina and then the RNA is what’s happening in every tissue of your body and in real time kind of like the software and this is one of the areas where research is going so you know we can write a blog explaining what RNA sequencing is and and you know by speaking to the users we can.
SPEAKER: F4
It’s certainly the simplest explanation I heard of DNA and RNA I remember back in biology classes squeezing my brain trying to figure out what the difference I mixed my metaphor metaphors recipe book software. But hopefully it came across as very good very good.
SPEAKER: F2
I wanted to ask you if you were able to give us a specific example of a participant you know the journey they go through through a real project they might have going at the moment in like with autism or something else. I dream I think would be good for people to understand exactly what you do because it’s I think the if I was to ask someone to explain what they’ve heard so far they probably would have heard platform API participant and met medical research maybe we were we’re part of this personalized medicine agenda but that’s about it. So I think I understand your case that would be really helpful.
SPEAKER: M7
Yeah definitely. I’ll go through two quick ones because they’re they’re both sort of illustrative in their own way so. So we’ve been working on a project with Professor Simon Baron Cohen who’s a researcher and Haroon doctor friend warrior who works with him as a postdoc in his group. They’re studying how genetics influences autistic traits in the general population. So this study can be joined by anyone. It’s primarily intended for people who’ve already done a genetic test because they are asking people to upload their data and then they compare the genetic data to the results of this 50 questions survey that asks you very simple questions like I prefer to know if I have a Friday night alone I prefer to be at home by myself versus go out and party. It’s a set of 50 questions that don’t in any way diagnose someone with autism spectrum disorder but there they put you on a continuum from 0 to 50 where the closer you are to 50 the higher you are on the.
SPEAKER: M3
Autism spectrum quotient scale so so you can take this quiz you can upload your genetic data if you don’t have the genetic data then you may be able to get Gina typed by Sano genetics for free it depends a little bit on some of funding we’re waiting for and and then you get updates on the project as it goes so we keep people updated with the results of any research that’s published by the group. What you know what has where you are in the process if your data is being analyzed et cetera. So that’s one example the second one I’m working on a study based around genetics of stomach ulcers. So some people when they take aspirin they get stomach ulcers and whether you know whether you develop stomach ulcers is is related in some way to genetic predisposition how your body reacts to the active ingredients and aspirin so this is another example that’s very specific to people who’ve had if you’ve had experience stomach ulcers then you can join this study you don’t have to have genetic data because we’re doing some genotyping for this one as well but we get it we’ve gotten a lot of responses from this where it’s almost like a light bulb moment for people you know I had a message for some of the other day that said this this is literally me I know I have stomach ulcers whenever I take aspirin and I’ve been trying to figure out why for years like cool research basic I hope you know I hope you can figure it out. And so that’s the kind of thing that we we probably won’t be able to give this person an answer you know immediately of what they can do and why it’s the case but over time people like that can contribute to a problem that affects them directly and hopefully get something back in return in that kind of then implies that the company is a long devotee to what you’re doing right.
SPEAKER: M4
These these studies potentially are going to take years. Right. Notable studies in the same topics over and over again. I mean what is the what does the future look like for you guys in terms of what was your vision for the next few years with the company.
SPEAKER: M7
Yes. So you’re exactly right. The frustrating thing about research is it can take years. So I have a we have a kidney rare kidney disorder in my family and we’ve joined research projects and there is one that I sent blood to probably a year ago and we still haven’t you know they still Southern finished sequencing it or analyzing it so it can take a really long time. But there are other studies that we do that are very quick. So we recently finished a study that from start to finish took about four weeks.
SPEAKER: M3
It was it was a trial so very you know. And so it’s very time sensitive. So we’re balancing between these you know quick and and very impactful individual level studies like clinical trials where the the effect for the participant is potentially very large.
SPEAKER: M7
You’re on to something that’s not working and you get put on to a trial and it does work balancing that with the longer term slightly more blue skies research which is being done by drug discovery companies academic researchers where they’re saying you know this might take two years for us to learn anything but we’re still committed to give people those updates so we don’t just update them into years when it’s finished. But you can update people along the way right. With this stomach ulcers study we let people know when we’ve reached 100 people reach 200 people when the data starts getting analyzed you know and people appreciate actually just knowing that their sample hasn’t been washed down the drain and forgotten about that it’s you know doing something.
SPEAKER: F2
Yeah that’s true because I did actually do a bowel bacteria test myself and it just took forever to hear the results and then the results were so so so complicated and scientific I didn’t understand what they meant at all. And I asked them translate them for me and they still want me to be honest.
SPEAKER: M3
Yeah I mean this is one of the I think things that the health care system needs to improve on that most test results are very readable by clinicians but not very readable by participants and there’s a group of researchers here in Cambridge actually that have been working on making documents that are friendly to both patients and clinicians. So it’s one it’s still one document it’s not like a children’s book you know play but it’s one document that both people can read. I think that that’s the future to me because people should people want to be empowered with their own health. They don’t want to especially in rare disease where often patients can. Patients often know more than their doctor because I’ve been living with it for decades or they have a child and and you know they can educate their doctor in some cases.
SPEAKER: M4
OK so last question for me. You know I think you know listening to you speak kind of really strikes me as the kind of intimate relationship that you’re building up with your members your customers your participants. And you know you’ve also got a strong duty of care and you’re really thoughtful about the kind of ownership of the data and the kind of empowerment of those users. How how do you think you scale that. Because you know right now it maybe a manageable. Yeah. Constituent the people that you signed up on the platform got no reason to doubt that you’re gonna scale in scale and scale in scale. So how do you think about that kind of problem when you’re operating millions of users.
SPEAKER: M7
So the way the way that we are thinking about that is rather than trying to build as large as possible and have millions of people.
SPEAKER: M3
We want to build in clusters or in therapeutic areas. So rather than. And the reason for this is is to we can. It can be much more personal and dedicated to those group of people in that cluster. So if we take auto immune conditions for example this is epilepsy is is an area where we’re starting to work on very soon. So parents of children with severe epilepsy have similar problems and and we can build similar solutions and stay in touch with this group much better than we can with with dozens at once and on the research side. I believe it’s also much better to do it this way because from a research perspective rather than got a hundred people with this and a hundred people with that and two hundred people with this and three hundred with that we can say we’ve been working on epilepsy and we have you know we have. We understand the patients and the patient organizations and we have good data and we have longitudinal data and the researchers can really make use of that and then we can scale the community approach or scale the therapeutic area approach. So rather than multiple talk. Yeah and and start you know. And I think that you know you can think of a lot of different ways to scale that whether it’s you have a dedicated person who is a community manager or group for example or working with organizations so you know there is other models that we thought about where you have you know we work in tandem with a patient organization or multiple groups of patient organizations to manage it that way. So yeah I think it has to scale rather than than be a one size fits all solution for everyone which I would you know would argue. Some companies like twenty three and me or ancestry have done that method where they sell a test to anyone and everyone and then try to get to such a large scale that then the clusters start to emerge. And we’re trying to do it slightly differently.
SPEAKER: M4
Yeah. I think that really comes through because you’re thinking out it from the patient’s perspective rather than the technology. Yeah which I think is really interesting.
SPEAKER: F4
So Patrick what’s happening for you next. Are you fundraising hiring firing. What’s going on.
SPEAKER: M7
Yes. So we’re you know for the least until January of next year we’re very focused on continuing to build the patient communities and execute on some of the research projects that we have running make sure we do them really well. We are not we don’t have any open positions at the moment but we’re always looking for smart motivated and passionate people especially if you know the mission of the company resonates with you so you can email me Patrick at Santo and dot com if you’re interested and we will be fundraising early next year. So we raised our first round of funding in around October November 2018. So we’ll be raising our second round of funding starting around January 2020.
SPEAKER: M6
Amazing. Well thanks so much for taking the time out. I know you’re super busy. It’s been fascinating.
SPEAKER: F4
Yeah. Yeah sure I understood finally what RNA and DNA means for expatriates Great to be a part of it. Thanks.
SPEAKER: F3
For me I was really delighted to hear that Patrick took on board the advice that he heard from the billion pound event panel and he was able to increase his membership exponentially in one of the key things he did. It sounds like I was speaking closely with the members that he already had to find out what works for them and not trying to blow my own opinion too badly here.
SPEAKER: F5
I can hear the whole main blow. I think guys said that during the vote. That was my piece of advice was it. Yes it was down to you. Yes exactly all of his success is about to say wow I really delighted to hear that.
SPEAKER: M6
I’m obviously delighted to hear that he increased his membership so much and I think building on that point I really liked Patrick’s aren’t the answer to my question about you know right now it feels like they’ve built up a really nice intimate relationship with their users. You know as you mentioned he’s he’s interviewing people on the phone and getting all those kind of that great feedback and you know that question around well how do you do that scale when you’ve got millions of people on the platform. And I think he’s a good answer in terms of building those focused specialist communities around particular kind of diseases and stuff like that.
SPEAKER: F3
So and conditions so yeah I’ve got a lot of confidence so they really have thought this through and it’s it’s looking really good in terms of the feature and also I was delighted to hear that because his academic supervisor was supportive of entrepreneurship and also he worked with the co-founder of congenital heart which is a successful genomic company in Cambridge. He was then encouraged and feel able to go into entrepreneurship from academia as well. And I think it shows again the people you hang around with they really help move you forward and influence what you’re doing. So the environment really matters. You know Jim Rhodes said you were the average of the five people who spend more time with. Really. Yeah okay.
SPEAKER: F5
I’ll explain why. Patrick’s age I was smoking and hanging out. Not doing anything constructive with all so my friends felt well it’s also that so that’s why you’re so good now because you hang around more with me. Oh. Back to you. Yes. So many people are so grateful to you for everything.
SPEAKER: M1
Thanks very much to Patrick short for coming on today’s episode. Another great conversation. The show was produced by Carl Homer and our logo was designed by Tanya’s ilk. And Ann Marie Miller of carbon orange. A huge thank you to speech Mattox who are supporting the show. Thanks to them we have a new feature the industry leading voice to speech technology has allowed us now to offer transcripts of all the shows. So if you check out scaling failing and providing dot com you’ll see a little linkup in the top navigation to our block. There you can read as well as listen to all the episodes say thank you to speech metrics. Much appreciated.
SPEAKER: F6
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