Name of Project: [Health link] MVP for Decentralised health data aggregator modules for direct data contributions from individual patients with verified chronic disease diagnoses (including diabetes, hypertension and/or obesity in metabolic syndrome)
Category : Experienced project (Category 3) – A “build” project to empower patients with chronic diseases to directly contribute their individual health data and participate in compute-to-data monetisation opportunities.
One-sentence summary : A grant is requested to develop a dApp module for aggregation of self-monitoring data from patients with verified diagnoses of primary care illnesses (such as diabetes and hypertension) to enable individuals to independently commercialise their personal health data that can be purchased by innovators and researchers for the training of commercial clinical decision support (CDS) algorithms.
Description of the project background:
We believe that access to basic healthcare and relief of suffering is a fundamental human right. However, this remains out of reach for many around the world, who find themselves both excluded from the value exchange of health data as well as “priced out” of health products/services. In an extreme example are patients with rare diseases. Their contribution of data to clinical trials and research are often instrumental to the development of a blockbuster health interventions (drug, device, etc). Yet these same individuals can still find themselves unable to afford the treatment that was developed using their data when it is finally made commercially available.
Description of the problem:
In recent years, scientific discovery across industries has been greatly accelerated by the availability of data and increasing computing power. Healthcare is no exception, whereby data-driven advances in the recent decade gave rise to innovations in medical devices and novel therapeutics that have improved healthcare outcomes and generated billions in value for capital markets. However, the considerable costs attributed to the development and distribution of these products and services make them too costly for many individuals. At a population level, growing barriers to accessing preventive healthcare have become the status quo for many, perpetuating a growing burden of chronic diseases. This has even been described in the developed world, aggravated in populations subject to negative social determinants of health (SDH), poor access to quality food/nutrition and lack of reliable health information to inform health-related decisions. Today, chronic diseases account for the bulk of consultations in primary care, and over 80% of US healthcare spending. Therefore, to develop a solution for this problem, we leverage the novel characteristics of web 3.0 technology to unlock the value of patient health data and develop a new economy around it to help address financial constraints and barriers to accessing preventive care.
Our long-term vision for this patient self-directed data aggregation module is to serve as the initial building blocks for a transparent system of patient participation in medical discoveries through contribution of their own individual health data with on-chain provenance. On-chain provenance and programmable distribution enabled by web 3, such as perpetual royalties to artists in the sales of non-fungible tokens (NFTs), facilitate equitable distribution of value for individual creators of tokenized art and content. When applied to tokenized healthcare data, this can enable compensation for health data to be distributed to individual patients that contribute their data in future through targeted airdrops on chain or issuance of NFT certifications for each commercial licensing deal of the data that can be staked for the patient to access perpetual yield or sold/auctioned to others in times of need.
When implemented at scale, this could facilitate community-led initiatives to launch AMM pools and compute-to-data earning opportunities from patient communities with relevant chronic diseases. This will seed the development of a new healthcare data economy for individuals to earn passive yield from their health data, which can then be used to offset the costs of basic healthcare services, particularly among patients with severe/rare illnesses that face a disproportionate financial burden as a result of their illnesses.
Description of the solution:
Our proposed solution is an MVP for pilot testing of a dApp module for patient-directed chronic disease data aggregation. This is the first of a series of modules conceptualised with allied health, general practitioners, and specialist that attended a breakout session during last month’s medical conference funded in our first completed Ocean DAO engagement grant. The product concept was subsequently refined by 3 clinicians based on their patient volunteers’ feedback collected in tandem with the ongoing agile development sprint and pilot of the onboarding funnel for health data into Ocean funded in the earlier round. In future applications to tokenise the collected data and publish the dataset in an automated market maker (AMM), patients will be able to commercialise their personal health data that can be purchased by data consumers. These may include academic researchers and/or commercial medical industry, who use this data for the training of commercial clinical decision support (CDS) algorithms that are applied in patient-led artificial intelligence (AI)-based conversational chatbots or alert systems within commonly used medical devices.
Although 75% of patients expressed an interest to understand their progress in chronic disease management, only 28% (fewer than 40% of those with interest) report having a system for collecting their self-monitoring data. Among these patients, over 70% presently rely on manual “paper and pen” approaches due to a lack of access to digital records or tracking applications. Over 80% of all patients interviewed expressed an interest to financialize their anonymised self-monitoring data to earn a yield despite requirements for completing an identity/disease verification process.
Given the interest of patients, we conducted further interviews and technical scoping exercise with volunteers to understand the types of data and forms of visualisations that would be most useful to them. The patients’ requests and requirements were consolidated into 3 primary health data aggregators for diabetes, hypertension, and general health (including anthropometric measures for metabolic syndrome). These were designed to highlight key data with relevance for patients, standard read-write functionalities for data management, programmed alerts for specific readings, and simple analytics for trend review and disease monitoring. A modular alert system will allow pre-programmed thresholds that are customised for individual patients by their providers, with optionality for patients and/or their providers to receive push notifications in instances of extreme values. A mock-up of the patient interface for diabetes monitoring designed based on the volunteers’ feedback during the technical scoping exercise is added below for reference.
In the image above, a patient’s pre-/post-meal glucose trends (“sugar trends”) are depicted in a clinically actionable manner to detect worsening results that can occur with disease progression, lifestyle changes or life-stage transitions, and monitor the impact of treatment. In the above example, an otherwise active individual that retires in January has made the life-stage transition from working adult to retiree. However, they make no change in their eating habits despite having less physical activity. As we can see, his aggregated blood glucose trends start to worsen/pick-up from Feb-April, whereby the system issues prompts to follow-up with his clinician. After a review with his provider in April for optimising of his lifestyle measures and diabetes treatment regimen, the patient’s blood glucose trends start to improve through to July. These data aggregation modules will leverage the existing user onboarding funnel for physician-annotated healthcare data in the Healthlink dApp that is being built with support from Ocean. This module gives patients greater visibility over how their lifestyle choices can affect the control of their health. Data like this can also be triangulated with future planned modules to create valuable datasets with yet further applications in future, such as data on drug dosages/regimens to generate AI-driven prescription recommendations for clinicians at the point-of-care (POC) optimised for patient demographics and individualised to the patient.
This current build project will bring in the first-ever source of healthcare data that is direct from verified patients, based on their chronic disease self-monitoring, that can be published and sold in the data marketplace. It will exponentially increase the value add of healthcare data for the Ocean ecosystem by providing daily avenues for a broad spectrum of patients to contribute self-monitoring health data even between their regular reviews with healthcare providers for physician-annotated healthcare data contributions. At an individual patient level, this allows for granular readings and trend analytics to be incorporated in clinical decisions made with their providers. This “self-serve” module with basic analytics, visualisations and alerts is intended to be made freely available for any patients as an “engineering-as-marketing” initiative for them to gain better insights into their chronic disease management. At a product level, this would provide population health data that can be published in the Ocean data marketplace. By making the module freely available to verified patients, we envision that this will lower the barrier for individuals to embark on their journey of contributing their personal health data into Ocean.
References:
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McGrail K, Lavergne R, Lewis S. The chronic disease explosion: artificial bang or empirical whimper? BMJ 2016; 352 :i1312 doi:10.1136/bmj.i1312
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Thimbleby H. Technology and the future of healthcare. J Public Health Res. 2013 Dec 1;2(3):e28. doi: 10.4081/jphr.2013.e28.
Grant deliverables:
1) 3 development sprints to code a patient-direct health data aggregator of chronic disease self-monitoring healthcare data from patients with verified diagnoses of diabetes, hypertension, and/or metabolic syndrome/obesity. -> Estimated cost 75%
2) Pilot with primary care providers to provide access of the free patient self-monitoring solution to these patients and pre-populate a list of early users that can be updated regarding further upcoming developments in Healthlink and avenues to financialize health data in Ocean. -> Estimated cost 25%
How the project drives value
The end-goal at the end of 9-12 months is to increase total number of data published in the Ocean marketplace by directly enabling patients with verified diagnoses of chronic diseases to contribute their self-monitoring healthcare data on a daily basis. It will also lower the barrier for patients to begin contributing their healthcare data to be published and sold in the database. The data contributed through this module will be consolidated in a dataset published at regular intervals into the OCEAN market place.
Funding request : USD$20,000
OCEAN wallet : 0x006d559fc29090589d02fB71d4142aa58b030013
Previously received an OCEAN grant : Yes (Round 8 and 11 - linked above)
Team details :
Dr. Dinesh Guna
- • Role: Domain expert/ Clinical lead
- • Linkedin: https://sg.linkedin.com/in/dineshvg
- • Background:
- o Medical Doctor, graduated from the National University of Singapore (NUS) with a Bachelor of Medicine, Bachelor of Surgery (MBBS)
- o Concurrently served as Head (Health Informatics) in the Collaborative Ocular Tuberculosis (TB) Study group from 2011-2019, overseeing the collaboration of 25 hospitals across 10 countries. He served on the internatonal steering committee for COTS-1, and was named a lead author for peer-reviewed manuscripts in COTS-1 including the landmark paper (https://jamanetwork.com/journals/jamaophthalmology/fullarticle/2657475) published in Journal of the American Medical Association (JAMA). COTS used cloud computing and big data to develop international diagnostic and treatment consensus guidelines for ocular TB, that are being used daily by Uveitis experts worldwide today (https://linkinghub.elsevier.com/retrieve/pii/S0161-6420(20)30013-0).
- o Awarded the Commonwealth Fellowship in Innovation from the British High Commission of Singapore, and funded for research training at Oxford University while furthering COTS in Moorfields Hospital, London.
- o Co-founded telehealth company Doctorbell in 2017 with Patrick and colleagues (acquired 2018) overseeing product strategy and medical affairs
- o Subsequently appointed Physician leader (Telemedicine) at Raffles Medical group (SGX:$BSL), where he actively promotes health education for patient empowerment and greater ownership of health outcomes.
- o Published over 30 manuscripts in peer-reviewed journals including JAMA Ophthalmology, Lancet Diabetes & Endocrinology, Lancet Digital Health, and Nature Digital Medicine, and is an invited reviewer in several journals including the BMJ, JAMA Ophthalmology and Nature Digital Medicine.
- o Named the 2019 NUS Young Alumnus (Medicine) of the year for contributions to health education and screening programs for underprivileged communities and beneficiaries in the Geylang and Chinatown regions.
Patrick Poh
- • Role: Product manager/Chief Technology Officer
- • Linkedin: http://linkedin.com/in/patrick-poh-huan-yu
- • Background:
- o Graduated from the National University of Singapore (NUS) with a Bachelors in Computer Engineering in 2016, and received the Institute of Electrical and Electronic Engineers (IEEE) Singapore book prize for his honors project applying NFC technology for medication reminders.
- o Co-founded a Telemedicine startup, Doctorbell, acquired in 2018 by MaNaDr
- o Subsequently lead developer and director of business development at MaNaDr, where he spearheaded product development, multiple commercial initiatives and partnerships. He was later promoted to role of chief development officer where he managed a multinational team of developers in Singapore and Hanoi, Vietnam to accelerate the development of the health tech platform.
Advisor : A/Prof Leong Choon Kit
Family Physician
MBBS, GDFM, M.Med (PH), MCFP(S), FCFCP(S), FAMS (Family Medicine)
Dr Leong Choon Kit had his training in Public Health and Family Medicine, has his interest pique in public policy and social issues. He had co-authored the Adult Vaccination Guidelines with several Infectious Disease colleagues in 2016, 2018 and 2020, and has been a strong advocate for vaccination in the primary care.
His experiences in medical mission put him in touch with health promotion and disease prevention locally and overseas. He contributes his time in the community, schools, social services on top of healthcare institutions, committees and advocacy groups.
Some of these interests he advocated strongly include but not limited to are healthcare systems and model of care, medical ethics, smoking control, issues related to teenage suicide, special needs children and their family and prevention of cancer via vaccine.
He manages the Tampines Family Medicine Clinic and leads the Class Primary Care Network (PCN). He is also the founding chairman of GP+ Co-operative Limited representing over 60 independent private clinics in Singapore that vote and collaborate on healthcare initiatives targeting sub-populations in need.
Besides clinical and consultancy work, Dr Leong is also an Adjunct Assistant Professor at Duke-NUS and Yong Loo Lin school of Medicine, NUS. and an adjunct clinical instructor at Lee Kong Chian School of Medicine. He is also involved in post graduate training with the College of Family Physician Singapore and Family Medicine Residency program with National Health Group Polyclinics and SingHealth Polyclinics. Dr. Leong believes in developing the future generation and he is involved in mentoring younger students and doctors in medicine, technology as well as developing their medical practice in the private sector.
