Data Sharing Frontiers and Healthcare
We are migrating to a world that is being transformed fundamentally from an analogue, to digital to a data-driven world.
The blockchain is the next major infrastructural layer of the internet. blockchains are the fundamental new architecture for data, identity, and financial transactions.
This transformation encompasses all societal systems, such as traffic, healthcare, government, and supply chains. It is enabling these systems to be quantified, drive efficiency, remove opacity and complexity across a myriad of industry sectors.
In fact, a World Economic Forum survey suggested that 10% of global GDP will be stored on the blockchain by 2027.
The data collected from wearable technologies and the Internet-of-Things, enabled by cloud computing, and big data analytics, has contributed to the provision of big health data and valuable insights.
Hospitals and medical institutions may integrate the data derived from wearable and medical apps, with other electronic healthcare records (EHR) such as clinical notes, to facilitate health monitoring, disease diagnoses and treatment at a patient and clinician level.
The use of this data could also enable, health insurance companies to develop personalised flexible policies that reflect the characteristics of individual consumers.
However, these breakthroughs have not come without accompanying challenges. Related to the handling, and sharing of healthcare data, between institutions and individuals.
Centred around the development of a secure data sharing infrastructure, that enables, privacy, security and interoperability.
Also, the storing of healthcare data in the public cloud could leave healthcare institutions and companies open to the risk of data exposure.
Healthcare institutions deploy centralised architecture, this leads to centralised trust. Which can leave companies vulnerable to hacking.
There are interoperability challenges related to integrating the different healthcare systems, housed within the various healthcare institutions.
Unlike in the financial services, where there is government regulation compelling banks to open their historical and current customer data to 3rd parties with the explicit consent of consumers to drive innovation in the industry.
Equivalent regulation is not present in the healthcare industry. Hence patients have little control over their personal health data. As the concept of self-sovereignty becomes well established in the financial services industry.
One of the spill-over effects of the successful adoption of the concept of consumer self-sovereignty over their data, within the financial services industry. Is that, this idea may be deployed across a multitude of industries including healthcare.
One of the main outcomes of the Open Banking innovation drive is the entry into the financial services market by companies that are assisting consumers in obtaining a single view of all their financial data.
The ability of patients to obtain a single view of all their healthcare data and gain an understanding of how external and internal factors may affect healthcare outcomes.
Thus act on that information is empowering to both patients and healthcare professionals.
The Digitisation of Humans
The digitisation of the healthcare industry may ultimately lead to the digitisation of humans.
Insofar as, the total medical history of a human, can be quantified and comprise of multiple layers of phenomic, physiologic, anatomic, biologic and environmental information.
Phenomic Health Information: this refers to the systematic measurement and analysis of qualitative and quantitative traits, including clinical, biochemical, and imaging methodologies, for the refinement and characterization of a phenotype
Physiologic Health Information: Clinical Physiology is a diagnostic speciality to which patients are referred to undergo specialised tests of functions of the heart, blood vessels, lungs, kidneys and gastrointestinal tract, and other organs.
Anatomic Health Information: Human anatomy is the study of the structures of the human body.
Biologic Information: According to Wikepidia, it includes many biomedical disciplines and areas of specialty that typically contain the "bio-" prefix such as: molecular biology, biochemistry, biophysics, biotechnology, cell biology, embryology, ... toxicology, and many others that generally concern life sciences as applied to medicine.
Environmental Information: This includes, climate information, phone map, GPIS Maps EPA phone GPS and paper clinical notes.
Companies that operate in this space include Caliber. According to the Journal for Informatics and Research. Caliber is the UK phenomics open-access platform for developing and validating electronic health record phenotypes.
The company created an approach for validating, sharing and reproducing phenotypes from national structured electronic healthcare data (EHR).
The company deploys algorithms for 51 diseases, syndromes, biomarkers and lifestyle risk factors. The EHR phenotypes are curated in the open-access CALILBER Portal and are used by 40 national and international research groups in 60 peer-reviewed publications.
Machine learning may be deployed to gather information, such as a person’s, medical records, as well as their lifestyle, behaviour, social network, and inances, to analyse how they are interrelated.
Weighting could be given to certain variables that may be used to predict health outcomes
In the future, most of the healthcare information will be patient-generated data, with predictions that the volume and contextual nature of this sort of patient-generated information, will eventually usurp the data captured from electronic medical records.
Risk Prediction Modelling in Healthcare
Risk prediction models in healthcare, are used as a decision-making tool to predict the likelihood, of patients developing certain diseases. Cardiovascular events and mortality would be a good example.
Predictive analytics is used to estimate the likelihood of a future outcome, based on patterns in historical data. Enabling healthcare professionals, to pre-empt potential events before they happen. Hence facilitating the emergence of preventative data-driven decision making.
Risk scores may be created through a combination of biometric data, patient-generated data, clinical test results, social-economic determinants of health. All this information enables healthcare professionals to gain insights into the provision of personalised healthcare at a patient level.
So, what is the Composition of a Risk Model?
For risk prediction models in healthcare to be useful, they need to demonstrate the following characteristics;
Contextualised Risk Prediction Models: Customised to the local population or healthcare system. How? Potentially through API’s from companies that may have data on local populations.
Adaptive Models: As new data is added the prediction model, must change, learn and adapt. This would be very useful to motivate individuals that are concerned about their health to see how changes in their behaviours could improve health outcomes.
The Automated Capture of New Information: Any new healthcare related events need to be automatically updated in the electronic records of the patient. To reduce manual input by healthcare administrators.
Increasing Interoperability Between Institutions on a Large Scale
Healthcare data in many countries live in a plethora of places, from electronic healthcare records (HER) systems, insurance claims, databases, siloed personal health apps, research and clinical trial databases, imaging files, and paper.
Currently, there is no overarching standardisation of medical data at an individual and societal level.
Incentives are yet to be put in place to enable the sharing, aggregation and monetisation of patient data at a consumer and company level.
True interoperability occurs when two separate healthcare systems can share, exchange and use data. In healthcare according to the Pharmacy and Therapeutics, interoperability can be classified in three levels;
Foundational - One EHR system can receive data from another system but does not need to be able to interpret it.
Structural – Data can be exchanged between information technology systems and interpreted at the data field level.
Semantic – This is the highest level of interoperability, where two or more systems can exchange information, and the exchanged information can be used.
Beyond the incompatibility of systems deployed by healthcare institutions to host healthcare data. There are cultural issues, commercial enterprises and healthcare institutions may have a vested interest in preserving the old way of doing things.
Hence some may be engaging in activities denoted as "information blocking" or hoarding.
Leading to a culture of inertia, fed by the fear of a catastrophe waiting to happen. If healthcare institutions and healthcare vendors incumbent within the healthcare industry embark on the journey from a siloed to an open collaborative data sharing paradigm.
Identity Management & the Blockchain
In the physical world, there are systems for the management of identity, in the form of identity documentation such as; driver licences, and passports.
However, there are no equivalent systems for securing either online authentication of the personal identities of individuals or the identity of digital entities.
Blockchain technology may be deployed to address this challenge. Through combining the decentralised blockchain principle with identity verification.
A digital ID may be created to act as a digital watermark. This may be assigned to every transaction in real-time reducing fraud.
Consumers can login and verify payments without the need to enter traditional username and password information.
Enabling individuals to store their encrypted identity, on their devices, however all transactions and or data exchanges can be recorded on the blockchain allowing them to share their data with companies and manage it on their own terms.
There are several companies operating in this space.
Embleema the organisation recently launched a HIPAA compliant healthcare blockchain network which allows patients to access and share their medical records with researchers and physicians.
In addition, the new solution helps patients consolidate their data and even profit from sharing it with different entities such as drug researchers, marketing agencies etc.
Patients using the platform can be paid in cryptocurrency in exchange for sharing their medical data with researchers.
BurstIQ was founded with one mission: to enable this next era of health. We believe that each person deserves to live their healthiest, happiest life, and that data will democratise health on a both a global and an individual level.
The BurstIQ platform was purpose-built for this new era. It connects any data from any source in a global network of businesses, researchers and people – all connected directly to each other.
Medicalchain blockchain maintains the integrity of health records while establishing a single point of truth. Doctors, hospitals and laboratories can all request patient information that has a record of origin and protects the patient's identity from outside sources.
SimplyVital Health is making its decentralized technology available to the healthcare industry. It’s Nexus Health platform is an open source database that allows healthcare providers, on a patient’s blockchain, to access pertinent information. Open access to important medical information as this helps healthcare professionals coordinate medical efforts more quickly than by traditional methods.
Data Sharing - Why Consumer Rights Related to the Ownership of Healthcare Data May be Critical for Success
The main premise of the blockchain is to lower the barriers of uncertainty when unfamiliar actors engaged in an exchange of value. In the physical world forms of property rights, clear ownership, and the enforcement of the rule of law, enabled by networks of trust such as ;
Banks
Insurance firms
Brokerages
Governments
That act as intermediaries between, a variety of actors. This is one of the greatest differentiators (regarding wealth creation) between developed and developing world economies. The impact of property rights on creating economic growth and wealth as stated by La Porta is;
“ “that adherence to common law confers the most robust legal protection for investors”.”
Common-Law which originated in England gives priority of jurisprudence over codified doctrine, facilitating the development of sophisticated financial markets.
In which a variety of investors with various risk, appetites are willing to bear risk, as they trust they will be compensated because their property rights have been protected.
In other countries in Europe, Civil law was adopted from German and Scandinavian legal traditions. In both instances, the laws are critical to entrepreneurship and economic growth. (Higbee Jason 2004).
“The lack of protection of property rights prevents capital investments which would help economic growth.”
The protection of property rights, guaranteed by the state results in an increase in investment demand, which in turn affects economic growth positively. The perception is that in some countries there is a gold- plated guarantee, provided by the state.
Implying that property rights will be protected. Due to the recognition that the rule of law will be enforced. The enforcement of the rule of law, results in lower levels of corruption within a country.
This increases trust and thus drives inward investment. And signals to internal and external investors wanting to trade within a country. That their property rights will be protected hence, playing a significant role in driving economic growth.
““There is a close and positive relationship between property rights and economic growth””
So why is this of any consequence in the digital world? In the digital sphere the ownership of data by consumers, across all their interactions with the variety of institutions they engage with.
May create a market estimated to be worth over US$1 trillion Governments’ around the world are developing the legal framework to enable this to happen.
The blockchain’s distributed ledger technology, could potentially provide the infrastructure for the delivery of trustless interactions between a variety of actors.
However, there are some challenges that advocates of blockchain will need to overcome. To take full advantage of the opportunity that the blockchain may potentially deliver.
Female Founders Healthcare Tech
