“YOUR DATA – YOUR RIGHT”

The digital disruption in the healthcare industry is turning heads. The value of medical health data is on the rise, evidenced by the increasing threat of medical data theft worldwide. In fact, these days, it’s been said to be even more valuable than that of personal banking data. It came therefore as no surprise when the European Union announced its new regulation on data protection and included the protection of personal health data as part of its coverage. From May 2018, the European Union aims to increase the protection of personal health data by requiring patients to give explicit and unambiguous consent to the processing of their personal data. Patients also have the right to access their own personal data, the right to transferring their data to another entity or person, and the right to object the processing of their data.

This process is a timely development. It means patient empowerment. It returns the ownership of personal health data to the control of the individual and effectively unlocks the monopolizing control of the companies/institutions that collected that data in the first place. But what does this decentralization of data really mean and how will this revolutionize research and development in the healthcare industry?

Driving population health through meaningful health data exchange

The robust exchange of medical health data as well as ease of access are crucial in advancing research and development in the healthcare industry. The decentralization of personal health data brings us one step closer to such an eco-system, but not quite. This is because individuals generally prefer to remain anonymous when it comes to matters of health and are less likely to participate in the exchange of medical health data especially if they have concerns about data security.

According to the founders of the HIT Foundation, this is where their platform comes in. HIT (Health Information Traceability) Foundation is an organization that aims to be the leader in blockchain technology for the healthcare market by empowering patients with their medical health data ownership.

We recently met the foundation’s co-founders, Dr. Quy Vo-Reinhard and Ms. Elizabeth Chee at our last Women in Digital Health event, where they shared about the foundation’s blockchain-based online marketplace for personal health data and explained how this platform will inevitably enable collaboration to take place between companies/institutions in the healthcare industry – through the meaningful exchange of health data between stakeholders in a secure environment, and with the consent of the individual data owners.

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Image 1: Dr. Quy Vo-Reinhard, Chief Data Officer & Co-Founder, with the HIT Foundation team and advisory board on the slide behind her.

“I believe blockchain is the technology of the future. It ensures that collaborations can happen in an open and secure manner. Our platform allows entities that store the medical data (e.g. hospitals, pharmaceutical companies) to connect with those who need access to it (e.g. policymakers, research and development divisions), with the individual data owner facilitating this exchange through his/her consent,” explained Dr. Quy Vo-Reinhard.

By using blockchain technology, HIT’s online marketplace secures individual data owners’ anonymity – making it more attractive for people to participate. Through the platform data seekers can incentivize individual data owners with tokens that can be earned when participating in a data exchange.

Integrity of data is of upmost priority

To ensure the integrity of the health data exchanged on their platform, current stakeholders who store the data (e.g. hospitals, pharmaceutical companies) are very much part of the eco-system. Their participation in the eco-system ensures that the medical health data of the individual that is exchanged has been officially verified and maintains its integrity. The foundation’s platform also makes it easy for current stakeholders to participate in the market without needing to completely build a new system; just plug and play. “You, the individual, are the person who can connect the dots and facilitate a meaningful exchange. We want the critical intermediaries to be a part of the system, but it has to serve a social purpose. Your data could be used to facilitate quality of care, prevention, and drive population health,” shared Elizabeth Chee.

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Figure 1: Token Economy in three phases

The next steps

Blockchain technology’s increasing application in the healthcare industry is set to benefit many stakeholders. It will first and foremost benefit the individual by securely unifying his/her medical health data and provide a comprehensive medical history that can be easily shared by the individual to medical institutions regardless of where the data resides in the first place. It will secondly benefit medical institutions and companies who are sitting on valuable medical health data but have had no options to exchange this knowledge, because of a lack of secure data transfer options and a lack of systems in place to easily engage and facilitate consent from individual data owners. The potential of blockchain technology’s application in the healthcare industry is tremendous and will most definitely play a defining role in revolutionizing its future.

The HIT Foundation’s blockchain-based marketplace for personal health data will be launched in summer 2018. They were recently recognized as one of the” Blockchain for social good ” projects at the World Economic Forum 2018 and was invited to participate in the panel discussing “Blockchain for Humanity”.

About the author

Aisha Schnellmann is a Singaporean native who spent four years recently working within an international philanthropic foundation. A sociology graduate from the National University of Singapore, she was as often at the floating villages of Cambodia conversing with beneficiaries, and the boardrooms of multi-national companies, speaking with executives and donors.

Currently based in Zurich, her interest in digital healthcare grew from the conversations she had with committed medical staff in rural hospitals in Asia, who remain hard-pressed with the technology available to them.

Again, we are looking at a promising start-up, which uses blockchain technology to develop a platform in healthcare, called “Sunny Lake”, based in beautiful Paris. It is built with the Ethereum blockchain and aims to offer an exchange platform for different stakeholders in the healthcare system like patients, physicians, researchers or laboratories. Their goal is to provide a toolkit, data and experts in order to conduct health and life science studies, in an efficient and effective way. What the benefits for patients/users are and why Sunny Lake is not a typical start-up, Jean-Christophe Despres (President and Co-founder) shared with us in an interview.

By Tram Trinh and Sunjoy Mathieu

Jean-Christophe, you are a French globetrotter and serial entrepreneur in the marketing field. Why did you decide to enable clinical studies with an emerging technology like blockchain ? Can you tell us more about you?

Jean-Christophe Despres: My entrepreneurial journey started back in the mid 90’s working on online communities. I later created the first ethnic marketing agency in France where I had to deal with public health campaigns targeting migrants. Once again, I’ve used a community-based approach. Later on, I’ve participated in a think tank, Club Jade, which launched those amazing projects on Big Data and Cancer, and an open source portable echograph. They happened to start from my office at the time and I had many opportunities to see the power of their growing communities. Talking with patients especially experts dealing with chronic diseases convinced me that a health community using blockchain technology would address major challenges in health and life science studies such as transparency and data privacy.

What is your Sunny Lake product?

Sunny Lake is an e-health platform based on Ethereum blockchain on which patients, physicians, researchers and labs can collect, share data and therefore build and test future health and life science studies in an accelerated mode.

This platform should become the meeting place for sharing between patients, physicians, research and lab organizations where everyone can find at an affordable and controllable cost, the tools, the data, the experts and the communities necessary to finalize the first steps of such studies. Our initial version of the Sunny Lake has just been launched and now we are developing an enhanced version, expected to go live in June 2018.

You mentioned Etherum is underlying your blockchain. Why select this one, since there are several other existing blockchain technologies?

Ethereum was designed to enable users to build smart contracts. Those contracts are algorithms which enable stakeholders to exchange data or counterparts, commonly referred to as tokens, in a secured and simple way. As our ecosystem involves many interactions with different entities (pharmaceutical companies or public labs) or individuals (experts or patients), we think that Ethereum is a fundamental layer for future applications. In addition, as a platform, we wanted to work on a public blockchain.

We understand that the benefits for patients and for the medical is a trustworthy reliable and traceable universe of questionnaire protocols, data and consent that can accelerate medical research findings. Is our perception correct?

With blockchain, there’s already a feature which is not questioned much, it’s timestamping. Bitcoin is running for many years with not a single fraud or bug on that matter. We are therefore quite confident with our business proposal regarding informed consent for instance. But there is more to it which is as important maybe as the internet revolution: the tokenization of our economy. This simply means that everybody in a community should be entitled to be rewarded for their participation through a common process. For Sunny Lake that means that there will be strong incentives for sharing data. We expect to receive massive feedback from patients not only because they will be rewarded but most of all because they will be able to measure up their own impact on research.

How do you envision the speed to adoption as everybody relies on trust and for the time being your direct customer is a business organisation, that will then reach out to the end user patient/consumers?

Well, this is why we are not a startup like others, always rushing. We need to build our own circle of trust, explain the impact of technology on business and change habits, participate in creating new standards. As long as we are moving forward, implementing our technology step by step, it’s ok. We can perfectly understand that the industry is watching us with interest and doubts. Hopefully, there are some pioneers and we are glad to receive more and more trust. Meanwhile, patients are eager to see this new age coming. It going to take a couple of years but we think it will bea fundamental change.

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It seems trust is a non-negotiable condition to impact a scaleable volume of questionnaires and consents not only in France but also globally?

The only issue is of a legal nature and it’s barely affecting us for what we are doing at the moment. For other matters, technology doesn’t care about borders. People suffering from rare diseases are already used to communicating with each other worldwide. What we want is us to have a greater voice and empowering them to initiate new research.

Jean-Christophe Despres, President & Co-Founder of Sunny Lake

What is the profile of companies using Sunny Lake? And why in your opinion do they trust you as all is based on Ethereum technology that other blockchain solutions could use?

Many pharmaceutical companies now understand they need a new deal with patients. It’s not always in their corporate culture and sometimes difficult in their highly regulated environment but they are eager to participate in trustworthy protocols. One of our client has challenged us because they didn’t want to have any record of patients public keys. It helped us a lot in designing the platform. If a company wants to use blockchain as a process, it doesn’t require Ethereum and we did that too. But most of them value this concept of community where a public blockchain makes full sense.

What are the concrete use cases you have been working on and was is the outlook for Sunny Lake?

Some real life science studies in Switzerland with the goal to create a tool for online consent, transparent, reliable and traceable. Every patient in the study could download on a third-party website the pair of encryption keys they would use for their consent. They are the only owners and holders of the keys. In order to have real consent, design of the protocol, training through simple videos were key to ensure complete understanding of the study purpose. The main investigator of the clinical study and himself could only receive the consent form to sign himself through e-mail and get the signature notarized by the blockchain. A first of its kind in real-life conditions.

As next steps, we will even receive more reliable data thanks to a methodology of registry based on transparency and unfalsifiable protocol, hence a stronger engagement from patients who can control their data and their traceability and enrollment probability.

Also, we’re launching an Initial Coin Offering. It directly relates to what I’ve mentioned regarding the tokenization of economy. Concretely, issued tokens will not only be displayed only to Sunny Lake but also to strategic partners that will contribute to build an improved ecosystem of clinical research. Patients will benefit from it but it may also involve other start-ups as well as pharmaceutical companies.

In a nutshell, what’s your critical life mission?

Contrary to many projects, we are not a portal, nor a “DMP” (Patient Medical Record) but an actor and conductor of an ecosystem. Our mission is to contribute to the best flow of quality data serving the future medicine based on big data and artificial intelligence. We want to facilitate data interoperability by creating meta data standards and by systematically notarizing exchanged data on the blockchain.

Thank you, Jean-Christophe!

Learn more about Sunny Lake and their projects:

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By Tram Trinh

Bayer announced a new global head for digital health and finished its 3rd accelerator batch. Merck has officially doubled the size of its venture unit and is launching its 3rd accelerator batch in 2017. Many ‘big pharma’companies including Roche, Pfizer and Takeda have started to reach out to the startup world, attending most of the key European digital health events (Health 2.0, ECHAlliance, FT healthcare, Frontiers Health etc.). Not surprisingly, these initiatives created a flow of digital health entrepreneurs rushing towards partnerships with the big pharma companies in hope to engage with a potential exit candidate.

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Pilot-isis – a typical infection of the pharma companies

Nevertheless the path to exit with a big pharma can be a daunting journey that can last a minimum of 2-3 years. Like any big corporations, they are huge organizations. Disseminating new digital health products across a base of a minimum of 100,000 employees (scattered around the globe) is a serious long-term effort that requires a lot of attention and time.

One of the major pitfalls a startup can fall into are pilots that end up getting stuck in one country/division/function and never scale globally. For example, if startups knock at the marketing door, chances are that their job priority in an affiliate or region is to launch a drug and deliver targeted numbers. Their focus is miles away from scaling up a newly experimented digital health innovation, often perceived merely as an add-on to their drug-selling business model (unless it’s an app that can be used immediately as a marketing channel to support drug branding).

“There is some unavoidable investment time”, says Fredrik Debong, co-founder of mySugr, a startup focused around diabetes. “It is important to define and agree on the KPIs with your C-level pharma contacts right from the start and maintain an up-to-date discussions you will most likely shorten the timeline.” If you start the relationship with no incentives for the pharma management to drive a project with vague uncertain envisioned results, you can be guaranteed your pilot remains a pilot for a long time.”

One success of mySugr with Novo Nordisk relies on the clarity of the promise from the start: educating the market fast based on a trusted loyal base of patients. MySugr B2C model represents a recurring loyal user base of close to 1 million patients. And recent news proved it right: Swiss Pharma € 50 bn Roche acquired MySugr in June 2017 at an estimated € 70-80  Million sale prices to advance with MySugr Roche’s own digital strategy on the diabetes market.

Medtech – alternative gate way to the health care system?

However, with medtech it appears that pilots are not needed and the timeframe between the date of initial discussions to rolling out the digital health solution can go down to 6 months, as demonstrated by mySugr in partnering with Roche. Traditional medtechs are currently in transition: they must adapt to several metrics shifts in reimbursement regulation, consumer empowerment, digital enablement and their competitive landscape. As a result they are opening up faster to increasing partnerships with the digital health startup ecosystem. Here are the 7 driving factors:

1)   New European MDR Medical Device Regulation

The 5th April 2017 EU Medical Devices Regulation requires more information transparency to consumers, vigilance and market surveillance, safety and reliability in medical devices. This is leading to portfolio rationalization at medtechs and represents an urgent incentive to invest “in new capabilities such as data analytics” EY 2016 medical technology report

2)   Shrinking revenues, pricing pressure from influential payers and hospital systems, in European socialized markets

This has forced medtechs to co-develop and partner with tech companies outside of their traditional boundaries to deliver shared-risk and value-based outcome to payers and patients. Omar Ishrak, CEO Medtronic, at JP Morgan Health Care Conference January 2016 already mentioned his “New Partnerships and Business Models based on Joint Accountability”. A few months later, Medtronic partnered with the digital brain of IBM Watson to improve diabetes treatments.

3)   Data as a common language

Christian Krey, CEO of Emperra, explains to us that “Medtech companies in our ecosystem have always been familiar with creating and using data for patients’ benefit. They understand the value of data and how to use and combine them to find new business models. Most Pharma companies still see their future in selling molecules, having a longer way to data-driven business models. For a digital health startup a partnership with a medtech company will leverage both partners.

patient centered care

4)   A “patient-centric offer” as the baseline

between medtechs and digital health startups, says Gabriel Enczmann, Director Business Development at mySugr. “They are both allowed to market and speak to patients directly while pharma is highly regulated on what can be said or not said about their product to patients “

5)   Moving “beyond the product“ into long-term Integrated health solutions.

Andreas Joehle, CEO & Chairman of the board of directors at Hartmann, stipulates clearly that his industry must re-think healthcare to create sustainable solutions: “we need to drop individual agendas and have an open-minded conversation about how to make real improvements. This needs to involve stakeholders from the entire healthcare value chain, as well as having people from outside the industry to bring new perspectives”. “Mobile apps have quickly established themselves on the healthcare scene and can help monitor everything from blood sugar levels to heart rates and cholesterol levels”

At Frontiers Health 2016, Dierk Beyer, Partner and co-founder of TransAct Advisory who see real-life digital health exit transactions confirms “If you combine a gadget with an IT platform, this can be interesting for both Medtech and startups. The links to disease monitoring represents a tremendous value to Medtech”

6)   The unique value of proximity and relationships built by startups with their end-users

Pritt Krus, CEO of Dermtest, from Estonia emphasizes how relationships catalyze sound  discussions: “As a digital health startup employing software and hardware solutions we have several potential cooperation points; yet quite often the extent and relevance of cooperation possibilities become clear only after a good relationship has been established with our main stakeholders first – doctors and patients – and there is initial traction with the service.”

This growing loyal community of doctors is what Touch Surgery, founded by CEO MD Jean Nehme, succeeded in building. Its cutting-edge surgery simulation app helps surgeons train ahead of complicated surgery procedures, or to familiarize themselves with new surgical procedures. Jean highlights that “The key to startup success is the ability to articulate the “new” and the “old” way in the startup “pain killer” value proposition to your Medtech partner. The winning agreement between both sides lies somewhere between the new disruptive way and the traditional model looking at long-term and existing practice”, which Touch Surgery did with J&J Ethicon, Stryker, Smith& Nephew and Zimmer to name just a few.

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7)   Medtechs and Digital Health Startups are ready from both an organizational and investment perspective to build strategic collaborations

Creating a global and local synergy in the partnerships

As Gabriel Enczemann from mySugr reveals, their successful startup approach has been on two levels as they are expanding from Austria, to the US, Germany, Italy, Belgium and Canada with the big Medtech Roche Diabetes. Speaking with champions and affiliates from two continents did help them build a global offering service that includes as well ready-to-pick options for country affiliates.

Synergy between startup R&D and medtech Regulatory know-how

“Partnering for a startup with a big medical device organization is like having an external regulatory department, and the startup is like the medical device organization’s innovation External lab” says Frederic Lordachs, co-founder and partner at Doctoralia from Spain.

One thing is sure: Roche’s acquisition of MySugr predicts further digital health acquisitions by Life Sciences companies, increased digital health valuations and investor interests. What digital health startups have recently built with Medtech companies will pay off in a shorter timeframe.

tram

About the author
Tram Trinh combines executive entrepreneurial and corporate health tech industry experience, as well as non-executive roles across Fortune 500, Privately-held Medium-Sized Business to Not-For-Profit organizations. She has lived and worked worldwide and founded VITANLINK to bring societal impact, co-founding and co-developing ventures in Medical Devices & Diagnostics | Telemedicine | Digital Health-eHealth | Artificial Intelligence

Picture sources
https://medtechboston.medstro.com/blog/2015/02/23/massachusetts-bets-on-digital-health https://www.healthcare-informatics.com/blogs/rajiv-leventhal/are-consumers-ready-patient-centric-healthcare
http://www.kpcb.com/blog/six-truths-digital-health-entrepreneurs-need-to-know

The Romanian economy has been a sensitive topic for quite some time. But starting with 2007, the small enterprises have been encouraged to develop more and more, especially by investing money in developing projects for which they got funding from the European Commission or from the Romanian Government.

There hasn’t been much emphasis on an entrepreneurial education which is probably responsible for the small number of SMEs in Romania. I hope this is about to change, because I have seen more and more projects for young people, where you can learn things about running your own business, and the advantages of being your own boss and so on.

Another reason for my hope of change is the fact that there are business incubators and places where you can develop your new business. You can benefit from financial support, consultancy and offices. For me, this is one of the best projects implemented by our government, but I had no idea about it until I was a trainee last summer for The Small and Medium-Sized Enterprise, Business Environment, and Tourism Department. There I heard about this project for the first time and I was really excited that startup companies have opportunities like this in Romania.

The idea was first implemented in 2005-2006, as a pilot program, to see if it works and if there’s a need for it on our market. 3 incubators were formed for 60 businesses and for 3 years, which were helped by our government. 56 of the businesses ended successfully the 3-year incubation period, creating 255 new jobs in 2009.

Given the fact that the pilot phase was a really successful one, 10 other incubators were set up in other regions of the country. Each business incubator houses between 16 and 24 businesses for a period of three years (the duration of an incubation cycle). At the end of 2014, 330 businesses were “incubated”, creating more than 700 new jobs.

What are the benefits for an entrepreneur go work with a business incubator?

  • Office spaces endowed with furniture and IT&C equipment, as well as production spaces
  • Access to meeting rooms and conference rooms
  • Access to utilities
  • Grants to cover start-up costs and utilities costs
  • Consultancy services, specific to the pre-incubation and incubation periods, free of charge or at low costs.

Moreover, business incubators are platforms for business development. They offer opportunities for networking, transfer of know-how, learnings exchanges and partnership development. The aim is to support the development of early-phase startup companies and help them to reach stability and autonomy before leaving the Incubator. After graduating from the business incubation program, companies should have increased competitive power and higher chances of long-term market survival.

Who can apply for the business incubation programmes?

  • Entrepreneurs who intend to set up a new business
  • SMEs with an operating history of up to two years

The selection process is carried out locally, at the level of each Business Incubator in the project. Tenant firms are selected upon their innovative business ideas.

Therefore, I do believe there is hope for new businesses to develop at the same time as our economy. The government is clearly trying to improve something and I hope they will continue doing it. And as soon as I will decide to start my own business, I will definitely apply for the business incubation program.

Ioana Vasiloiu has a Master’s degree in International Relations gained in Bucharest – Romania, and also studied International Marketing in Poland. She has been working as a Social Media Coordinator for two years now and is enthusiastic about new developments in business and marketing.

From the 27th until the 30th July, HEALTHINAR not only did some business-scouting in Tel Aviv but was also a part of the “Global Entrepreneurs” panel at the mHealth Israel conference. We encountered various promising startup-companies (as Israel really is THE startup-country). If you are interested why, this book is our recommendation.

Below a small selection of interesting startup-projects we ecountered and are starting to cooperate:

  • GeneWay: A very unique project about “Genetic Wellness”, see also this interesting article about it.
  • Night-Sense: “Provides a non invasive real time alert of life threatening sleep hypoglycemia events” and hence improves the life of people with diabetes.
  • LB Sight: It’s about hand hygiene, trying to reduce hospital infections. The specialty: they don’t focus on hand hygiene but on the problematic of the touch which has been neglected so far.
  • Heartin: Checking your heart remotely
  • Medasense: Pain monitoring in the hospital

Our huge thanks also go to Tram Nguyen-Trinh and Levi Shapiro, the organizer of mHealth Israel. They made the conference a big success and helped us to have an unforgettable Israel experience. It was very impressive and we hope to be back soon with HEALTHINAR.