What is healthbank?
healthbank is the world’s first citizen-owned health data exchange platform. In your healthbank you can collect health data from any source and any format. If you choose to do so, you can share your data with doctors, care teams, loved ones, and anyone else who has an internet connection. Just as important, you can stop sharing your data at any time for any reason.
What does it mean to be citizen-owned?
We created an organization that combines citizen power through the healthbank cooperative – and flexible business innovation via healthbank innovation AG.
Both entities ensure that we can create an innovative health data platform whilst ensuring that it’s only the user who owns their data and decides whom to share these data with.
With our basic mechanism that we call the “organizational firewall” the healthbank cooperative has full control over the activities of the healthbank innovation AG, so no data are being shared without the user’s consent.
Why is there a need for a “citizen-owned global health data transaction platform”?
The world seems to agree on the importance of a few basic aspirations: happiness, prosperity and health. While one could argue that happiness and prosperity are not as intertwined as commonly believed, health remains undisputed as the greatest asset of individuals and society.
At the same time, we see how personal data and health data are being shared in the internet without the knowledge or even consent of the user. We believe, this must not be a part of an ethically viable economic system. We believe that the user should have full control over his or her personal data.
This is why we are building healthbank for you.
Why wouldn’t large internet corporations do something similar?
Large Internet corporations are fairly well known for aggregating lots and lots of data that people share day by day. Keeping these data in full user control wouldn’t pay off as this kind of platform lives off visibility, full transparency – and heavily customized advertising through big data mechanisms.
We are building something completely different, even though we also provide a timeline and connections. Our goal, however, will never be full transparency of individual data – rather the opposite. We enable users to share their data – but we simultaneously teach users to share their data just as much as they need to and not as much as only possible. We promote the concept of data privacy and security as we know how harmful a medical condition might be out in the market.
Talking about big data mechanisms: we believe that big data can be a great thing and could lead to the next medical breakthrough. On the contrary, we will never share users’ raw data with anyone – the patient only shares strictly anonymized data with our partners as we believe that nobody needs to know who the person behind their data sets is.
Which data sources can be integrated in the platform?
Currently, we provide a platform with basic functions. However, we are working on integrating data sources from the entire health ecosystem – from medical records in doctor’s offices via fitness trackers to smart medical home devices; from hospital medical devices like MRT via intelligent diabetes scanners to dentist’s x-rays.
There are unlimited possibilities, which we are working on to integrate into the platform.
How can I become a user of the healthbank platform?
To become a user of the platform is pretty simple: You can sign up on www.healthbank.me and create your own account in a few simple steps.
In the basic version, the account is absolutely free of charge and there are no strings attached: you neither have to connect to other people nor become a member of the cooperative. By doing so, we wish to enable you to benefit from our innovative platform without any further obligations.
How can I become a member of the cooperative?
Every natural person can choose to become a member of the healthbank cooperative and support our long-term journey.
To become a member, you must complete the online registration form and buy one membership share in the cooperative at a one-time cost of CHF 100,-.
What do I get for the CHF 100 when I become a cooperative member?
First of all, the CHF 100,- fee is a one-time fee only, there will be no re-occurring charges for cooperative members. What do you get for the money? Well, there is a lot: Members benefit from a free usage of the platform whilst supporting one of the greatest organizational concepts to keep data in user’s control. Each member also is a shareholder with a vote. At the annual General Meetings of members, if there are sufficient funds, members can vote on the general direction of the cooperative and whether to issue cash dividends to members. And there’s a lot more that we’ll add to the benefits over the course of time.
Overall, we think this fee is quite fair. We use it primarily to cover the entire process of managing new members, registering them with the shares etc.
Important to note: you can create a healthbank account and upload/store/share your data without becoming a member, so having a basic account is free.
What’s the benefit of becoming a member of the cooperative?
Members get to decide on the future of the healthbank initiative by voting at the General Meeting and electing the Board of Directors of the cooperative. It is also only the members that can change the purpose and governance of healthbank through changing the Articles of Association.
At the General Meeting each member present has only 1 vote and at maximum can represent 1 other member who is not present at the meeting. Therewith no single member attending the General Meeting could have a majority of votes or a voting block.
If and when the members of the cooperative decide at the General Meeting that the cooperative should pay-out a cash dividend per share, each member will receive such a dividend for each membership and/or economic share he/she holds.
Who can become a member of the healthbank cooperative?
The Articles of Association state that only individuals with a minimum age of 18 years can become members with a vote.
A company (or any person that chooses this option) could buy one or more economic shares without a vote in the cooperative to support the mission.
Why is a Swiss cooperative and not, for example, a foundation?
We simply believe our current set-up is the best organization to ensure both: innovation and citizen-ownership.
When we researched corporate law and related court cases, we learned that Switzerland has the best-established infrastructure around cooperatives globally. In turn, a foundation structure, for example, would not allow us to pay back fair rewards, e.g. for sharing data for research, to our members – and you.
Besides that, cooperatives have proven to be economically viable: more than 25% of Swiss GDP is generated from legal entities that are cooperatives and there is an extensive body of civil law cases clarifying and strengthening the Swiss Civic Code that has its origins in 1908.
We also know that it takes a lot of trust for you to pick healthbank as your solution to store, manage and share your personal health data. The trust and neutrality that are important values of Switzerland and the Swiss people, however, are also at the cornerstones of your healthbank.
Is healthbank a not-for-profit company?
No we are not. We are a for-profit legal entity consisting of a cooperative and a share capital company, both with a business plan focused on making the organization breakeven or better within a few years after the launch of the platform.
We expect that most of the income we generate is returned to you directly when you participate in research studies.
However, to run and especially to improve such a platform requires some income that we are happy to generate. Whilst healthbank innovation AG will re-invest its profits for further innovative projects on the platform, the members of the cooperative decide at the annual General Meeting on dividend payments.
How does the healthbank innovation AG make money?
healthbank innovation AG is responsible for managing all institutional partners from the healthcare ecosystem and connect them to the platform. These partners generate revenue for healthbank innovation through data storage, data transaction and data analytics plans – as long as the user allows us to analyze their data.
healthbank innovation AG will also generate revenues by project setups and research project connection between research institution and user.
Can a company buy a lot of membership shares and take control of the healthbank cooperative?
No. Only individuals can become members with a vote of healthbank cooperative. A company (or any person for that matter) could buy one or more non-voting economic shares in the cooperative to support the mission.
However, this would not allow them to vote at the General Meeting and as such they cannot influence the election of the Board of Directors, influence the direction of healthbank cooperative or change the Articles of Association.
Can I review the Articles of Association?
Will healthbank share or sell the data I have collected on the platform?
No – healthbank will never sell your data. You are the only one who can make decisions on sharing or selling your data. healthbank might need to analyze a few meta data, e.g. profile data etc., to tailor research project offers or to customize data sources.
However, healthbank will never use, analyze or share your original health data. We built the user consent management to avoid such possibilities right from the beginning.
How will healthbank share my data to researchers?
If at some point a researcher is willing to pay users to have access to their data, you can review the details of the offer on our platform and then decide if you are willing to participate in this research.
If you agree to it, then healthbank will – unless explicitly asked for in your user consent – anonymize your data and will only give an anonymous copy to the research project.
In return, the researcher pays healthbank and healthbank pays you, so the researcher will never know your identity thus treat your information anonymously.
How do I know my data is safe from hackers or illegal access?
We’re working hard on making healthbank one of the safest places to store personal data in. Today, we work with encryption and your data is stored safely on servers in certified data centers in Switzerland. In addition to that, we’re currently working on dual validation mechanisms to access your account via user name, password as well as a QR code or mobile phone validation and more important safety mechanisms. We’ll keep our users updated on this topic!
Will healthbank make me rich?
Probably not. However, we believe your health data might hold the key to unlock the next breakthrough in medical research and we therefore encourage you to share your data for research purposes if you are comfortable to do so.
We also believe you should be fairly compensated for providing your data to the researchers and that this compensation should vary based on quantity, quality and effort required by you to provide the requested data.
What is the possible income from sharing your data with research institutions?
The amount of income available to users willing to share data for research will depend on the benefits (cash or non-cash) offered, project-by-project, by the specific research institution seeking access to the data.
I have a new doctor / hospital / pharmacy / care provider and want to share with them the medical history I store on my healthbank account. How do I do that?
You control who you share your data with via your profile settings under the heading “Consent Management” on the healthbank platform. Here you will also find more instructions how to automatically integrate data on your account.
My doctor / hospital / pharmacy / care provider is willing to give me my data but does not know how to connect her/his system to healthbank?
Great to hear you have a forward thinking and innovative health care provider. Please ask your provider to open an account with healthbank, then you will be able to share your account and your data with the provider. At the same time, the provider could save data objects directly to your account if you allow him to do so. In the future, we are planning on introducing a more sophisticated health care provider portal.
I have diabetes and thus have a dense health record. In the FAQ section it is explained but how does this exactly go? Do I need to contact my hospital and tell them a technical process for sharing my med record with healthbank? Or do you make the technical contact?
Each healthbank user opens a healthbank account and decides what data to put in the account. Users can request their doctors, hospitals and other sources of their health and medical data to provide a copy of such data, for example as a PDF or jpg file, so it can easily be uploaded into a healthbank account.
healthbank is currently working to have “automatic connectors” to data stored by health care providers (e.g. hospitals) to enable direct uploads of user data into healthbank accounts. Please bear with us until this is realized.