Rarechain - Healthcare for a healthy planet

Aimed at : 

1. Improving Patient Journey for Rare disease diagnostics reducing Time, Cost, resources, duplicative travels and testing of patients and caregivers
2. Data Sharing across the globe will need to be made easier to unleash unidentified clinical parameters to build the most efficient knowledge base
3. Optimizing transport for supplies and treatments

People affected : 

1. 7000+ Rare diseases
2. 400+ M Patients affected
3. DNA's undiagnosed
4. 3-5 years to arrive at a particular diagnosis

Few major factors contributing towards the problems are : 

1. Effective Rare Disease Care  consolidation
2. Scope 3 emissions challenges
3. Tightening Clinical needs alignment suiting Next Gen care
4. Clinical Information Leakage
5. Challenges in consolidation of Connected Care principles
6. Wastage of Biomedical research funding
7. Inefficient Diagnostic Journeys
8. Unavailability of “Unknown Disease” awareness
9.  Complicated Infectious outbreaks
   1. Effective care to Rare disease Patients

As more patients & diseases challenge the Global Healthcare system. new ‘precision’ approaches are required to improve Clinical outcome on Rare Diseases diagnosis and treatments, contain healthcare costs on Rare diseases and facilitate rapid return to the community for Patients with a Quality , Connected & Precision Rare disease care, this solution provides :

1. Improved ability to predict which treatments will work best for specific patients suffering from Rare Diseases and reduce Scope 3 emissions
2. A futuristic “Rare Chain service” for Rare disease treatment and prevention that takes into account of individual variability in genes, environment, and lifestyle for each person

Impact on Scope 3 targeted actions :

1. Sustainable and Shareable Medical records
2. Long term 5 year plan is to make it fully online and 0% Travel
3. Pharmaceutical consumptions , Unnecessary GP visits , Frequent Blood glucose testing
4. 0 travels from Employees on Diagnosis related support
5. Building collaboration between Carbon accounting experts and Clinical communities
6. Building realistic efforts in measuring and monitoring
7. Circular economy introductions slowly for an effective society
8. Lessening Carbon footprints in terms of data transportations, restrictions on confidential data

Impact on Providers :

1. Precision Clinical Outcomes data
2. Effective Patient engagement based on Rare diseases
3. Customized workflow for Unserviced Diseases
4. Real world Patient satisfaction

Impact on Patients :

1. Timely Patient engagement & education
2. Patient Big data management and Rare disease governance
3. Precise connectivity of care (CoC)

Impact on Researchers :

1. Can tie back to an identity to feed right data for Ngen (Next generation) care
2. To champion innovation to help tomorrow’s healthcare solution for Drug production , Clinical analysis and Researches

Impact on Health information exchange

1. Transforming Rare disease findings Data into Actions
2. Customized Data Registers (across Geographies) for Rare Diseases
3. Enhance Patient Health through precise Raredisease and Uncovered disease data

Our Chief Technology Advisor is keen on taking this platform globally

Current team is Limited and engaged ad-hoc as mentioned before

Our customized solution has been prepared based on 

1. lot of community readings 
2. lessons learnt 
3. Inputs from Clinical surveys 
4. Outcomes from Clinical researches

We have currently built Test environments simulated with few 100's of masked Patients data with data collection originated from Online surveys, Patient advisory forums, Social worker's inputs.

Our solution is definitely more than an Idea due to :

1. POC's presented to limited Healthcare communities
2. Demo sessions to Healthcare facilities (wire frames)
3. Tested in TEST Bed with Sample Patient data
4. Registration system authenticated with Smart contracts 

We would like to provide this platform as we do have a visionary roadmap aligning to SDG, UN, WHO 's recent guidelines on rare diseases. 

Few barriers we may overcome with the limited prize money is : 

Legal : Preparing SOP's  and Policy makeovers

Cultural : Creating Blockchain Awareness

Market Barriers : Unproved Blockchain integrations

Financial : To improve further development and end to end roadmap

Technical : Try and Test, deploy other undeveloped features

Our CTA is a visionary Healthcare Transformation Leader and WHO certified professional connected with multiple Healthcare leaders and Network

Connected with many Primary , Secondary and Tertiary Healthcare facilities across the geography

A regular author and presenter in Multiple Healthcare symposium and forums 

CLINICAL : Unmissable Annotations on ALL diagnosis and NEW findings across Geographies

KNOWLEDGE : Widened Knowledge base for every Rare disease symptoms reported in every remote corners

Early identification of Clinical parameters for an accurate diagnosis

VISION : Every RARE disease should be cured and cleansed from society

SECURITY : A Blockchain platform in a secured deployment available for every contributor involved in Clinical Diagnosis and Research

TECHNOLOGY : AI integrations for remote diagnosis by relevant experts in terms of any expert involvement requirement

SCALABLE : Easily deployable once agreed with Local providers

ROBUST : Platform with Trust and Transparency with Patients, Providers, Caregivers ,Researchers, Organizations and Healthcare community

Sustainability : Sustainable and Shareable Medical records

Transport movement reductions : Long term 5 year plan is to make it fully online and 0% Travel on all records

Reduce : Pharmaceutical consumptions , Unnecessary GP visits , Frequent Blood glucose testing

Employee transfers and commuting : 0 travels from Employees on Diagnosis related support

Collaboration : Building collaboration between Carbon accounting experts and Clinical communities

Real world measurement : Building realistic efforts in measuring and monitoring

Simplicity : Simplicity of method and diagnosis of Rare diseases

Indirect : Circular economy introductions slowly for an effective society

Secured Data : 0% Data theft across sharing organizations (through Digital signatures) in Blockchain platform - Long term Vision

Mobility : Lessening Carbon footprints in terms of data transportations, restrictions on confidential data

Cost reduction : Better Research outcomes through an online systems accessible to all Researchers, Healthcare contributors and Clinical Leaders

Community :  Affordable Healthcare for ALL

Supply chain emissions : Reduce supply chain emissions through unnecessary trips

1. Tracking each of committed SDG as mentioned in the technical solution and proposal over a period of 2-4 years
2. Committing to Environmental Action plan with collaboration of Patients
3. Reduction rate in Valuables and wastes
4. Promotion of ecosystem preservation activities with Patients and Providers
5. Calculation of positive impacts based on the deployed chain over a period of 3-5 years
6. Reduction of Threat of new & Complicated Diseases
7. Reduce Scope 3 emissions during Diagnostics Journey
8. Bargaining power of Rare Diseases vs Healthcare
9. Future Needs of Challenging & Rare Diseases
10. Improving Unmet Better Care, Better Health, Better Lives

1. Patients can have treatments options they accept based on their ongoing and deteriorating symptoms suffered from Rare diseases
2. If “Rarechain” integrated with Primary care platform, results would even tackle and support major illness which paid spaces to any Rare diseases and this may improve clinical outcomes while patients receives precise Rare disease treatments
3. Through “Rarechain” platform, a precise efficacy of different interventions can be determined and documented and later analyzed
4. Patients can get treatments in care locations much faster and real time evidence by tracking drugs performance real time and real-world settings (anytime & anywhere)
5. Improve patient wellbeing and optimize healthcare costs
6. For drugs & Pharmaceutical organizations, guide patient selection (Rare diseases) for clinical trials to enhance their efficacy and pave the way to an advanced and precise drug discovery for future generations as Diseases / Symptoms are becoming extraordinarily complex
7. It could be a reliable data structure and Blockchain registry to identify solution patterns as millions of records with multiple permutations are available
8. A “Digital vitamin” availability as an app to match the Current state analysis with “future state” fix for Patients “Meeting patients where they are and what they are in need of” through real-world evidence (RWE) suite through “Rarechain” platform Promotion of “Happy Patients” , “Happy environment” or “Happy Employees” or “Happy workers” in every organization through real-world evidence (RWE) platform once data outcome is concluded 
9. A customized “Subjective snapshot” of a particular patient can be derived from multiple data residing in real-world evidence (RWE) platform
10. Rarechain platform does not need documentation efforts. It can run jobs with any EMR to extract info and re-publish records upon agreements with EMR provider
    Rarechain will add it to “Rare disease Registry”and knowledge base for public view upon subscription 
11. Rare chain platform does not authenticate to every user requesting as it is deployed in secured Blockchain platforms 
12. Sustainable and Shareable Medical records 
13. Long term 5 year plan is to make it fully online 
14. 0% Travel Pharmaceutical consumptions, Unnecessary GP visits , Frequent Blood glucose testing 
15. 0 travels from Employees on Diagnosis related support Building collaboration between Carbon accounting experts and Clinical communities 
16. Building realistic efforts in measuring and monitoring Circular economy introductions slowly for an effective society Lessening Carbon footprints in terms of data transportations, restrictions on confidential data

1. AI
2. Blockchain Contracts
3. Image Data services
4. Computer Vision algorithms for Image reading

Had performed POC's on TEST environments

Had referenced algorithms for other similar integrations

Chief Technology Advisor - Full time

QA Manager - Ad Hoc

Validation Tester - Contract

Developers - On Demand

Business Analyst - On demand Hiring (for Contracts)

We also involve Healthcare community members on Surveys , data collection and other minor activities as per Data protection guidelines

1. Close to 5+ years on Blockchain modelling and Financial models
2. AI - 2+ years on Machine Language integrations with EHR platforms (TEST) environments
3. 1+ year in recent TEST BED creation under a local setup

Planning to HIRE and SUPPORT :

1. "Differently abled" Healthcare Leaders during further development
2. Using Hearing Impaired (HI) resources for Validations and Testing to make the platform "Disabled friendly"
3. I myself being the Chief Technology Advisor is a Partially Hearing Impaired contributor to this initiative for last 5+ years but not succeeding due to many limitations like Funds, Licensing, Resourcing, Blockchain limitations
4. Our CTA was also supporting Outreach activities in Healthcare community during COVID-19 Phase 1 & Phase 2

Our Business model will provide not just VALUE but precision care to Rare disease community and aimed at providing on time results making patient diagnostics journey relaxed and not stressed as stress adds to more problems in a patient's journey.

Our solution can be : 

1. be a reliable data structure and Blockchain registry to identify solution patterns as millions of records with multiple permutations are available
2. A “Digital vitamin” availability as an app to match the Current state analysis with “future state” fix for Patients
3. “Meeting patients where they are and what they are in need of” through real-world evidence (RWE) suite through “Rarechain” platform
4. Promotion of “Happy Patients” , “Happy environment” or “Happy Employees” or “Happy workers” in every organization through real-world evidence (RWE) platform once data outcome is concluded
5. A customized “Subjective snapshot” of a particular patient can be derived from multiple data residing in real-world evidence (RWE) platform

We are first aiming at simulating a MVP with core features addressing scope 3 emissions and reduction of stress in Patients journey. Post the basic roll out, 

1. Have plans for applying to GRANTS in multiple regions to enhance the knowledge system of Rare diseases policy and standard operating procedures
2. Initial plan is to have "BLOCKCHAIN RARE DISEASES registries" in specified regions within 1 year
3. SHORT WINS (within 6 months) targeted are to obtain approval for Blockchain strategy and deployment model for Nationwide implementations (due to Geography limitations across the world)
4. MID TERM WINS are providing a sustainable Product roadmap for "FUTURE ENHANCEMENTS"" to bring in More funds and making it a workable venture

Our teams had NOT been successful on a larger scale product (the actual VISION) but had been successful on:

1. Proof of Concepts demos (5k USD) with Healthcare divisions (Gamification integrated for Rehabilitation care)
2. Whitepapers awareness on Rare diseases enabling Blockchain as FUTURE platforms (Rare Diseases)
3. Won INTERESTS but not funding from few symposiums (Heidelberg, etc)