When medicine in the past needed blood to save the lives of soldiers in war – we set up a blood donation system. When we needed a way to save the lives of people suffering from heart or kidney failure – we established a global organ donation system. Currently, millions of patients around the world do not have access to needed therapies due to lack of data necessary for their development, so we established the Data Lake initiative – explains the reasons behind the founding of his latest startup our interviewee.
Data Lake is a company that co-creates a medical data donation system by building its technological component. The goal of Data Lake is extremely ambitious: to build a trusted, secure medical data donation system based on informed patient consent and blockchain technology. The data obtained in this way will be transferred to researchers around the world for research and development purposes.
Healing can be done in many ways
Wojtek Sierocki is a doctor by profession. Already during his studies he created and then for many years coordinated the “We Treat with Mission” program, sending Polish medical staff to volunteer in Kenya (for which he was named to the Forbes 25 under 25 list). Then he founded a medical startup in this country, which supported remote monitoring of pregnant women – he created an application that connected doctors and women from villages located hundreds of kilometers from hospitals, who had no chance to give birth in medical facilities. He is currently active in two techmedia startups: Data Lake and Healfy, contributing to the treatment of patients in a different way than a doctor, but with the same goal as a doctor.
Why Wojtek Sierocki, along with the co-founders of Data Lake, decided to take on this difficult task is explained in the startup’s White Paper:
“Access to high quality medical data determines the life and death of patients every day. Access to data is essential to any scientific discovery. Yet globally, there is no data access solution that gives terminally ill patients hope for new therapies by leveraging the already collected medical data of many other similar patients, while not compromising their subjectivity and rights.”
Data Lake’s idea for keeping patient data safe is to use the world’s first blockchain-based storage system for such data, where every change, every viewing of the data is recorded. As Wojtek Sierocki says in an interview, blockchain is supposed to make it so that “the patient doesn’t have to trust any institution – they can trust blockchain technology and audit themselves every consent and operation on their data.
How many patients have to agree, give their data, for the system to start working and how long do you need to achieve this?
The moment the first patient submits their data to the blockchain and allows us to retrieve it with a statement of intent is our success. That’s our perspective, and we should be able to do that within the next few months. We also want to get the first data flow relatively quickly.
The data we collect should be useful for research and development purposes, so in addition to looking for patients willing to share their data, we are simultaneously contacting research centers gathering information on what data they need.
What is your plan for acquiring patients?
According to the survey, Poles are willing to share their data. According to the 2018 data of the “We Patients” Foundation, 77% of Poles want to give their health data for the development of science. A similar decision is willing to make 94% of Americans and 79% of Germans. According to the DKMS Foundation, there are almost 2 million bone marrow donors registered in Poland, who already decide to make this noble gesture for altruistic reasons and thanks to social campaigns. We also anticipate that a patient who joins the donation system will receive a $LAKE token issued by us which entitles him/her to receive a number of benefits in his/her online panel. Donation for medical purposes is therefore widely known and accepted in Poland, Europe and the world. We hope that thanks to appropriate campaigns and cooperation with numerous partners we will be able to build trust in this new type of donation and convince patients of its importance.
Distribution of $LAKE tokens in the system, source: White Paper Data Lake.
Who will be the first patients?
At Data Lake, we want to create a system for medical data donation, such as blood donation or bone marrow donation, so in the long run this will require us to have an extensive patient information campaign to encourage patients to become data donors. The first users of the system will be Data Lake members, including myself. Then we will ask for help from patients with a specific disease, at a specific treatment center, and finally we will go out to the general public with our vision, just as organizations setting up a blood or bone marrow donation system are doing at this point.
We start with patients suffering from one selected disease, because that’s how we collect the data needed by a specific research unit working on finding a cure for that particular disease. The second reason is motivational – a patient with a particular disease is more likely to share data that will be used to develop a cure. Whether it’s for themselves or to give hope to the millions of patients like themselves who know how painful the disease is.
What potential does this market hold?
According to the startup, the potential profits in the medical data market are as high as $70 billion a year. Why such numbers? As we read in the company’s white paper, such high estimates come from a simple fact – each of us is a patient – a potential data donor: “The first country that is a field of action for Data Lake is Poland. The population is estimated at 38 million people. Narrowing the circle of interest to people whose medical data is most relevant from the point of view of potential recipients, we are left with approximately 18 million potential data donors. At a valuation of $130 per record, the market size is more than $2 billion, taking into account only a portion of the population and ignoring the fact that the data may be reused multiple times.” According to Data Lake, the average price offered by research centers for medical data from a single patient is currently between 100 and 1,000 British pounds.
How will you ensure data security?
We started our conversation by saying that what was blocking the growth of startups in Kenya was a lack of trust. What we are doing now at Data Lake and the Give Data Foundation is creating a network of trust that, through blockchain technology, will give patients confidence that their data will not be misappropriated, passed on without their knowledge. We use blockchain because it is a solution that works on the principle of “trust as a service”. – every patient data and every action on patient data will be stored on the blockchain. We will be using a public blockchain on the Polygon network, so the patient will be able to see what is happening with their data at any time. With this solution, the patient doesn’t have to trust us or any organization or person, because everything will be recorded in a transparent, immutable way, visible at any time to the patient.
The second aspect of the high security of data use is the fact that we are creating our system as a non-profit institution – the Podaruj Dane Foundation, which is already supported by such organizations as the Polish Hospitals Organization and several patient organizations such as the Alivia Foundation for Oncology Patients and the We Patients Foundation. So many organizations that have the patient’s best interests at heart have joined us in our project, and their representatives will sit on the Transparency Council of the Podaruj Dane Foundation. This will be a collective effort of many organizations that have the patient’s best interest in mind.
How many breakthrough drugs could we have in Polish hospitals if the Data Lake idea takes hold? This is a question worth asking ourselves. In January we published in MS the text Transfer of technology and medical ideas from scientific institutions to business. How to speed it up?, which concerned, among others, the importance of clinical trials for the development of medicine in Poland. Data Lake solution can help to accelerate development of breakthrough medicines as much as increased number of clinical trials.