A data economy for patient-driven biomedical innovation…
And it’s open source.
Introducing Fleming Protocol, an open-source data economy that fuels collaborative biomedical discovery by incentivising patients or hackers to work with labs, scientists, and academia.
Inclusion is core to Fleming Protocol’s mission.
We all desire the best health outcomes for ourselves and our loved ones, but the systems designed to do this are often broken from the patients perspective. Increasingly people are taking matters into their own hands. Individuals and families are tackling diseases that cause them pain but are overlooked by most scientists. Potential treatments have been found by lawyers and engineers who became scientists in order to save those dearest to them. We can all relate to this in our own way.
We urgently need to harness this drive, inherent in all of us, to make the necessary improvements to these broken systems. Digitising the traditional biomedical system won’t make it inclusive (nor open, nor decentralised). Rather than being dissatisfied customers, we need systems that encourage “Ownership Health,” and allows patients to leverage their expertise gained from having their condition.
This is why Fleming Protocol is building the Web3 infrastructure needed, which will have these features:
- Fleming Data Wallet — ensuring patients have full custody and control of their data
- Fleming Data Marketplace — where patients capture the value of what they create
- FlemingDAO (Decentralised Autonomous Organisations) — an internet native structure that is collectively owned by the self-governing patient community
Increasingly, health data is generated from patient-owned devices rather than traditional healthcare settings. Globally there are 10 billion Internet of Things (IoT) devices (for example wearable devices, smart watches, remote monitoring sensors), a number which is expected to grow to 25.4 billion by 2030. We are increasingly using these devices to track our health and gain insight.
Fleming Protocol will provide the infrastructure for patients to store all of this data in one place using IPFS as our decentralised data storage solution, giving users full custody and control of their data. For example, our infrastructure will give patients the autonomy to develop automated and personalised systems for self-management. We also envision that the patient data will form the basis for a new personalised healthcare economy in the metaverse, all whilst preserving patient privacy and security.
Legacy health systems do not provide us with this level of autonomy. Instead, our health data is routinely sold without our consent or knowledge. This generates significant economic value for corporations, none of which reaches the patient who generated the data in the first place. Through Fleming Protocol’s patient Data Wallet, the idea of Ownership Health will become a reality.
Fleming Protocol’s Data Marketplace will allow patient users to monetise their data if they so choose, allowing them to directly capture the value that they create. Interested users of this data (“data buyers”) could be, for example, citizen scientists, labs, De-Sci DAO’s, governments, charities and biotech’s. In the early stages Fleming Protocol’s focus will be to aggregate data in a privacy preserving way for clinical trials.
In future Fleming Protocol will expand its focus to other areas, whether it’s to help early stage biomedical research or train biomedical A.I. applications.
All marketplace activities will have a small transaction cost, which will go to the FlemingDAO treasury (see the next section). We’ll also develop the mechanisms where patients can collectively benefit from the financial upside of any commercialised products they helped to create.
The FlemingDAO will provide the open-source infrastructure for patient-led groups, facilitating their collaboration with scientists and other experts (e.g. legal, commercialisation) required to advance their collective mission. The FlemingDAO will have a built-in treasury which accumulates revenue based on a % share of all data marketplace transactions (see previous section).
Patient users collectively decide through decentralised, open-source voting processes (for example, Quadratic Voting) to help determine which projects to fund. This is essential in growing the value of the system and ultimately making it self sustaining. Initiatives could be:
- Open source software- e.g. A.I. and big data analytic tools that provide patients insight into their own data
- Open source hardware- e.g. for medical devices
- Scientists grants- Patients vote on biomedical projects to provide funding to, and depending on the agreement, could own a proportion of the IP developed as a result of the funds they provide
Because of the importance of genetic and real world patient data in successful biomedical research outcomes, over time the FlemingDAO will develop the expertise to be the legal wrapper for other citizen scientists and De-Sci DAO’s to help them navigate the biomedical approval process, which is notoriously long and costly. For example, the FlemingDAO could offer development expertise to guide breakthrough therapies or rare disease treatments to approval, which often have a faster (and less costly) approval process. As a self governing community, the patient collective can vote on who the FlemingDAO collaborates with.
Conclusion (aka The Big Pic)
In response to the statement, “the human body is the biggest data platform, who will capture value?” Fleming Protocol believes this should be the patient.
We will design our applications to be user-friendly and accessible. Our aim is to be the go-to infrastructure for self-governing patient communities that can solve problems, by putting those with the most skin in the game in the driving seat.
The open-source Automated Insulin Delivery (AID) system (also known as OpenAPS) is a very good example of this. A key catalyst for this innovation was a concerned father who hacked/reverse engineered continuous glucose monitoring (CGM) devices, in order to better manage his sons type 1 diabetes. What followed was a global movement of patients, scientist and hackers who collaborated in an open-source community to develop the AID system. AID systems significantly improve the outcomes for type 1 diabetics in a way that available devices from industry failed to do. We believe that the success of this patient-led innovation can be replicated across many more conditions.
Fleming Protocol’s infrastructure will be open-source, transparent and user friendly. The incentives system will be geared toward improving patient outcomes, which will encourage users to be part of a self-governing community and to share data (securely and privately) to tackle common goals.
Play to Earn (P2E) gaming is often regarded as the killer area which will truly be the watershed moment for Web3 adoption. It has captured the wider public (i.e. non-crypto heads) imagination in a way that De-Fi hasn’t. Perhaps because nominally, P2E gaming is more relatable to the general public than De-Fi.
But as P2E gaming is more relatable than De-Fi to the general public, health is even more so. A tipping point will soon be reached where patient-led innovation is mainstream. Where we collectively recognise our powerful ability to improve our own health outcomes, all whilst capturing the value of what we help to create. When this time comes, Fleming Protocol predicts that a similar level of mass adoption will be seen in the realm of Health 3.0/De-Sci.
Stay up to date and get involved! Reach out to us on Twitter: Fleming Protocol (@FlemingProtocol) / Twitter
(an updated website and a Discourse forum will be available soon).
