March.ai

Ben’s Friends (Https://www.bensfriends.org)

We are an online patient community serving over 75,000 rare disease patients, families and caregivers across 45+ rare diseases. Our platform provides much needed support to people living with rare diseases and have been asked to scale it to more diseases. For that, we are working on ways to scale our platform using technology so we can serve hundreds more communities of rare patients.

When they are diagnosed, rare patients, their families, and caregivers eagerly seek to find others like them, and join online patient communities so they can find information about their disease. 

75000 of them trust the information provided on the Ben’s Friends online forums because it is curated by moderators who are rare patients or family members themselves. 

Our problem: how to scale what we do to up to 7000 rare diseases?

There are many online community platforms that Ben’s Friends can leverage to provide this valuable service, but they all present some issues:

- None of them is built expressly for rare disease users. Many of the features that rare members need are not available on these platforms. 

- The platforms can often be cumbersome to use and it takes time and effort to curate the information, which limits the amount of communities Ben’s Friends a 100% volunteer organization can support. 

- They are typically expensive for a non-profit.

- They make it difficult to control for accuracy of information shared in the platform, as well as data privacy of the users. 

- They support few languages (English, mostly) 

March.ai is an AI-powered online community platform designed expressly for the needs of rare patients and families. The platform is functioning today and our goal is top pilot it at scale during this project. The platform boasts a number of Generative AI features that will help the Ben’s Friends moderators in multiple ways:

• Flag inappropriate content automatically and route flagged posts to the moderators for handling.  Today, content curation is done manually, which takes time and is not foolproof.
• Curate a list of scientific information sources (e.g. PubMed, Scopus, etc.) that will be made available to members so they can get access to scientifically-appropriate information when they have questions instead of relying on word of mouth or «Dr Google»
• Globalize the online community by providing instant translation into any/all languages, which will help Ben’s Friends grow its memberbase and improve the diversity of views in the communities 
• Personalize content that can be of interest to the members based on their likes/dislikes and history, creating a more personalized experience that will improve engagement
• Other features as ideated & developed during the pilot project supported by this grant.

March.ai will be available to both Ben’s Friends volunteer moderators and patients, family or caregivers using the online forums. 

With March.ai, moderators will have more time to provide valuable support to their members. March.ai will assist with some of the labor-intensive tasks, like research, translation, reading, and flagging, as well as content writing, so that moderators can support more members across more communities.

The platform will also be able to summarize the contents of the discussions and provide a synopsis to the moderators about key topics that are being discussed. 

The level of accuracy of the information searchable through the platform will be higher than other platforms thanks to a scientific literature review feature offered in the platform: information is searched through sources curated by Ben’s Friends moderators, giving them full control over the accuracy & relevancy of the information. Output is indexed with the sources so readers can go to the original articles. 

Besides accuracy, the platform will be able to personalize content based on members’ likes and history in the platform. For instance, a caregiver may be reviewing information differently than a patient themselves. This will result in a better experience for users.

Because of Gen’s AI’s ability to translate, the platform will be automatically open to any/all languages, whereas it is only English today. This will allow members to interact directly with members who are from the other side of the planet as well as individuals in the US who speak a language other than English.

March.ai has been under development for 1 ½ years. As of today, it is a functioning platform, with users currently recruited via organic acquisition. 

We believe in patient-centric design. With this project, Ben’s Friends will be piloting the March.ai online community platform at scale, with larger groups of users forming an entire online community. 

Ben’s Friends, the operator of the online communities, will have complete control over the features released, how they are presented and used by the members, to make sure the pilot is effective. 

This will allow us to gather valuable feedback and fine-tune the platform in the context of a non-profit operating an online community.  

With this grant, Ben’s Friends will be collaborating with March.ai to gather structured user feedback on the platform so that it can emerge as a fully-functional MVP before scaling as a platform to support rare disease communities looking for an accessible online collaboration tool.

We believe the platform is the first of its kind to be built on a Generative AI technology stack (versus legacy tech stack with Gen AI added to it)

This allows us to rollout features that can not be easily made available on platforms today, such content translation, content summarization, content moderation, literature search & review, content personalization and more.

Additional Generative AI features considered on the roadmap include agents that can help members with certain activities such as organizing travel, dealing with health claims, booking appointments, etc. 

Ben’s Friends is a volunteer organization, that delivers much-needed support to over 75k members, all rare patients, caregivers, and/or families themselves. 

Ben’s Friends has limited resources, people-wise as well as financially. 

Our vision is simple: every one of the 7000 rare disease communities should be able to leverage a cheap (free?) online platform so their members can support one another, research information and share their experience. 

With the March.ai platform, Ben’s Friends’ vision is to be able to scale its activities beyond the 45+ online communities that it serves today. Our goal is to eventually serve hundreds of rare patient communities.

The Prize is a way to accelerate this process.

Our project team is a joint collaboration between experts in their respective fields.

With over 75k rare members and 45+ online communities, Ben’s Friends is in the best position to collaborate with March.ai to deliver a fully functioning product, ready to scale to hundreds of rare disease communities. 

Once the platform is ready, after this project, Ben’s Friends plans to use the platform to support all its communities as well as launch hundreds more communities.

From a technology standpoint, the March.ai platform is run by technology experts, all working at Apple and fully versed in the latest Generative AI technology developments. The March.ai team has collectively worked for decades in the AI domain and specific applications in clinical research.

Finally, JC Muyl, founder at MyRareData will Program-Manage this project to ensure it is conducted using industry best practices. MyRareData is made up of professional consultants in healthcare who have delivered many such product development projects in digital health.

Goal #1 (within a year): fully user-tested and piloted platform ready to be deployed to more online communities. Our goal is to deploy the platform to more Ben’s Friends communities once the pilot is over. 

Goal #2 (within 2 years): All Ben’s Friends communities leverage the platform and the platform has been deployed to several other rare patient communities (min 12) with various configuration of the business model (freemium, sponsored, licensed, etc.)

Goal #3 (within 5 years): the platform is leveraged by 500+ online communities.

Below is a breakdown of activities across the project team 

Ben’s Friends (user community)

-Identify communities

-Recruit members + Moderators

-Use the platform as directed by Product Mgmt. team

-Provide input & feedback on the platform

-Provide access to de-identified user data to train the platform model

MyRareData (Program Management)

-Run use case workshops

-Create user stories

-Coordinate user feedback

-Identify & help prioritize features

-Coordinate sprints with technology team 

March.ai (Technology)

-Demo the platform

-Provide training

-Attend user feedback sessions

-UI/UX design

-Build features per roadmap

-Maintain platform availability

-Proactive security monitoring

Below is a high-level project plan:

Planning

-4 weeks

-Demo platform to project team

-Build action plan 

-Identify target user communities

-Recruit users into focus groups. Ensure a representative panel.

- Review board review & approval of plan of action

Piloting 

-2-week Agile sprints for 4 months

-Demo platform to user groups

-Prioritize features for UAT

-2 sprints for UAT of existing features 

-Ideate & prioritize new/modified features based on feedback

-MVP definition (existing/new features)

-4 sprints for new features

-2 final sprints to stabilize the platform

Publish Results/Plan for scale up

-4 weeks

-Formal interviews to gather evidence of benefits to members & Ben’s Friends 

-Go/No-Go for Ben’s Friends to scale use of the platform

-Plan scale up to more Ben’s Friends communities

-Product Marketing for the platform

-Approach Industry with platform value prop 

There are 7000 rare diseases in the world. Each of these diseases is a group of individuals across the world who have the same need to learn about their disease and support one another through online communities. 

Rare disease patients and families need an easy way to build communities in order to engage & collaborate. Facebook Groups used to fill that need but present several issues: data privacy, the advertising-based business model and the lack of curation of the content leading to inappropriate content in the communities. 

With Generative AI, it is now possible to build & manage online communities at scale and offer new tools for curation, moderation and engagement that didn’t exist before. 

Our project aims to improve the following issues:

• Cheap access to online community platforms for patient groups. Each patient group should be able to stand up a global online patient community with curated information and ways to engage their constituency.
• Accuracy of information. With so much information and a real difficulty in curating what is correct and what is not, we believe the scientific literature review capabilities available in Generative AI will help members learn the latest information about their disease much faster and with fewer risk of inaccuracy.
• We expect higher level of member engagement thanks to more relevant & frequent content in the online community platforms
• Generative AI Generative AI also offers new agenting tools that will allow rare disease members to perform complex administrative tasks more easily than they were able before, such as scheduling medical visits, coordinating transportation, dealing with claims issues and more.

Approximately 5

MyRareData: 1 resource: Program Manager.

March.ai:  3 resources: 1 Product Manager, 1 Head of Technology, 1 Software Engineer

Ben’s Friends: 2 FTEs. 1 member of the mgmt. team and 1 admin resource 

March.ai has been under development since January 2023.

The user team, assembled by Ben’s Friends, includes many members of the rare community to ensure the rare living experience is guiding of the project.

We have selected a professional patient research organization to ensure the sampling of users and their feedback are gathered in a way that avoids bias.

The composition of user feedback teams will be based on diversity: gender, age, disability status, ethnic background and more, as appropriate. 

Finally, there will be a patient review board that manages the governance of how decisions are made, including ensuring diversity of opinion and experience.

This project will be managed as a collaboration between 3 entities: Ben’s Friends, the primary, MyRareData, the Program Management and March.ai, the technology platform. Below are the respective business models of each of the entities.

Ben’s Friends offers its online community free of charge to any/all rare patients, families, and/or caregivers. As a 501c3, Ben’s Friends accepts donations (personal or corporate) and grants to fund its activities.

MyRareData works with rare patient groups, such as Ben’s Friends, to foster collaborations with digital solution providers (such as March.ai), which is how this project came to be. MyRareData collects a fee for the work it does, which is reinvested into pro-bono work for the rare community.

March.ai is an online platform for rare disease patient communities that leverages trustable AI to enhance community engagement and experiences. March.ai is currently pre-seed, founders funded, and a pre-revenue C-Corp incorporated in Delaware. March.ai’s mission is to empower the rare disease community to help patients, caregivers, and researchers, and eventually facilitate the development of life-saving treatments for these communities. March.ai’s business model will be finalized during the 2nd phase of this project, once the platform has been fully piloted and is ready for scale-up.

As a non profit, Ben’s Friends has been financially sustainable for over 15 years. 

We expect this project to improve this sustainability as follows:

• The March.ai platform will help increase membership in Ben’s Friends as well as the number of communities managed. This will create a better value prop for our Industry partners looking to find patients for clinical trial or patient research projects.
• Notably, the ability to support members globally will be of interest to Sponsors and CROs looking to recruit for global trials.
• The summarization capabilities of Generative AI will create opportunities for new patient research solutions of interest to Industry.
• We also expect that some features and products introduced on the platform for Industry, patient groups and platform members themselves might be made available on a donation basis, with the goal of sustaining the activities of Ben’s Friends platforms over the long term.