We don't sell your data. You sell it yourself by choosing which research projects can access your medical and genomic data. The researcher promises to provide you with rewards for data and participation. Such as revenue share 🇺🇸 not available for US persons or companies , priority in treatment for you or your family member, custom health reports based on study results, etc. Read the research page before you consent to join in order to know what you are getting in return for providing your data and whether there are any conditions, such as filling out email surveys once every few months.
The CrowdWise part is to make it all smooth by creating cybersecurity, legal, compliance, and research infrastructure solutions.
To make your life easier, so you don't have to collect and upload your data from different institutions, we will become your representative once you sign the Letter of Authorization.
Letter of Authorization is a weaker form of Power of Attorney. We may introduce Power of Attorney in some jurisdictions. Letter of Authorization is limited to data extraction and contacting institutions on your behalf.
Letter of Authorization provides authorisation only for what is listed in the letter you sign electronically. A authorisation letter does not give us the right to sell your data. It is only used to get it and communicate with institutions on your behalf, which can be time-consuming.
Providing access to data to researchers is done by you consenting to join the research offer listed on our platform according to Terms and Condition
We may develop automation policies you will be able to set up to join research meeting specific criteria in the future. Still, it's not in our roadmap any time soon, and you would explicitly configure it yourself.
There is a difference between data transfer (download) and data access. All researchers have access by default, but not transfer (download option). Some more significant enterprise researchers with their own secure and compliant infrastructure may get a direct download option; you will be informed of it when consenting to join the research.
It works by providing researchers with remote desktop access. Machines can only be accessed behind VPN. Data is on those machines, and they do their research there. We are blocking ways of downloading the data following already established government biobanking practices used by The UK BioBank, the biggest biobank in the world, and the NHS Secure Research Environment, which is working in a very similar fashion. This architecture developed and used by governments over the last 10+ years is a huge inspiration for us.
Access is still a lot; you have to be mindful that researchers DO have access to your data. They can try to remember it... Remembering hundreds of people's genomes is close to impossible, but more specific medical history in small sample studies may be something they start to recall after a few weeks of work on this data. They can try to take screenshots of it (even though we will provide solutions to monitor such activities and block them immediately).
We are doing identity verification (KYC) on every person on the platform and carrying some extra checks on each researcher. Still, they DO HAVE access to data at the end of the day, as that's the point of being able to do research. Be mindful of whose research you are consenting to join.
Many of our cybersecurity solutions will be designed to protect not only participants but also researchers from themselves and potential liability if they get hacked. If we notice any suspicious activity on any research account, our system can freeze the account instantly.
Our founding team is based in Cambridge, United Kingdom, but has an Eastern European Ethical Hacker background coming from Poland! Currently one of the strongest and most committed NATO countries.
Cybersecurity is a never-ending arms race! Anyone promising you 100% security is either ignorant of what the cybersecurity field is about or simply lies to you. It's a never-ending cat-and-mouse game.
What we can promise is that we are treating it extremely seriously and are proud to be paranoid about it.
There is a HUGE difference between Anonymized data and Pseudo-anonymized data.
We are stripping your data of your name or other personal identification information before we provide access to researchers, but this does not mean your data is anonymous. It is pseudo-anonymous. For example, if data contains simple glucose blood results from multiple days with the exact times it was taken and someone has this data already, they can figure out who you are based on their existing records.
There are ways to minimize it, like synthetic data, but it creates noise in data, and the more you do it, the less valuable data is for most types of research. That's why ensuring your data is secured and not public is crucial for BioBanks.
Currently, the choice is either never to give your data to anyone, maintain as much privacy as possible, or opt-in to some government biobank research program, charity, or private company. You are helping science by opting in, but accepting your data is being sold left and right. Sadly, both private and public sectors do it, and you don't have control over who buys it.
Those two options of being privacy conscious or being sold left and right are awful! We need more choices, more control, and more ability to balance risks with benefits to enable researchers to work on important causes that can help not only our kids in the distant future but also our parents soon!
We will be politically and worldview-neutral. We will accept anyone who passes our KYC checks as a researcher, but it's up to you who do you give data!
Whether you are vegan or a carnivore, academic or independent biohacker, little or big pharma, it's not our role to gatekeep. It's up to each participant to decide whether they want to participate in a specific research study.
We are very conservative and strict on data security. We do not put any medical or genomics data on the blockchain. If we integrate blockchain in the future, it will only be for control management, audits of consents, and revenue share rights you hold to allow you to sell them before they start bringing recurring income. We do not plan to use blockchain to store data, and we believe this is a highly non-compliant, unsecure practice that will put many companies in deep trouble in the next few years.
U.S. Securities and Exchange Commission finds revenue share agreements potentially classified as securities. We will be working on getting an SEC brokerage, but for the time being, we decided to block this option for U.S. persons or U.S. companies.
You can thank 🌨️ Wall Street in the 80s, which caused such strict regulations response in the USA. We will not block researchers from offering revenue shares in the U.K., Switzerland, and Europe. Give us time to engage SEC and get this feature into the USA.
Our , which every user on the platform, including researchers, agrees on, state that the researcher making the research profile page is making a public offer. The research profile cannot be modified after the first participant signs up for research. New benefits can be added, and existing benefits can be improved towards participants, but they cannot be modified or withdrawn once at least one participant signed up.
CrowdWise is a marketplace. We are not a side in participants and researcher dealings, but we collect logs and audit files, which will be robust evidence to help enforce the researcher's promises if such need ever occurs.
Considering highly sensitive data, we try not to provide researchers with the names or personal information of people who sign up to research. This is tricky to solve, and depending on the research contract, we may need to release that information to a researcher at some point or serve as a middleman to exchange payments, health reports, or gifts of kind to participants without releasing participants' names.
We aim to reach the point where it's only exceptional cases when we need to release personal details to researchers so they can honour contract terms. We will continue to build software and solutions to make dealings between both sides as smooth and privacy-focused as possible.
Each researcher's profile will have the flag of the nation in which they or their company is based. We reserve the right to decline researchers from jurisdictions where contract law enforcement is weak, or data privacy laws are questionable. Still, please be mindful of this when consenting to join research.
Yes! You can start very small to learn! Feel free to run a small family genetics study. It should not be any weirder weekend hobby than building family trees is.
You can also run a small community study with a group of friends sharing the same interests, diets, and lifestyle activities.
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Let's make science fair and honest again!
CrowdWise, services are for research, and educational use only. We do not provide medical advice. All researchers also obliged they will not provide medical advice and use CrowdWise for research only.
