CaregiverCentral

A family caregiver is anyone who provides long-term care for a loved one with a chronic condition. There are more than 43.5 million family caregivers in the US. They report frequently feeling isolated and unprepared, causing burnout in up to 70% of family caregivers.

Caregivers are being sent home with a chronically ill person with minimal support because healthcare teams are operating over-capacity and extend inadequate support service for home-care. Caregiver burnout leads to a 23% increase of ER visits of the cared for, and burdens care costs to $3,874 per person, annually.

CaregiverCentral is a match-making platform that connects caregivers with each other to foster mentorship relationships between them. It relieves pressure on a centralized hospital system through grassroots peer support. (Swept all possible prizes at MIT Hacking Medicine Rehab Track 2018: Grand Prize + Weill Cornell Medicine Award. Piloted at Burke Rehab Hospital)

We are solving the problem of the family caregiver burnout, caused by the caregiver’s unpreparedness and isolation. At a burnout rate of up to 70%, the problem stems from aging global populations on one end, and an evolving global healthcare system that is disregarding this trend.

Global populations are aging, and today's healthcare systems are not designed to accommodate to aging populations. In fact, healthcare is re-adjusting to minimize hospitalization stays to decrease costs and have a higher patient admission-discharge turnover. Alongside these trends, the burden of home-care falls on unsung heroes: family caregivers. The sacrifices that these individuals often make are overlooked by society: where work policy fails to re-include them into the workforce after their caregiving journey, where and clinicians fail to prepare them for what's next - often because clinicians are not trained to handle the newly-emerging dementia prevalence.

Family caregivers, thus, are left to their own devices, day after day.  And technology can definitely help.

It is a global issue, save minor differences in healthcare systems (insurance-based systems vs state-provided systems). Rest assured, we have not come across a healthcare system in the world that is designed to acknowledge family caregiving as an extension to care provision.

Family caregivers of loved ones with dementia (most often Alzheimer's), traumatic brain injury and stroke survivors, and amputees – in the United States.

The population of unpaid family caregivers in the US alone is 43.5 million, and 150 million worldwide. 

CaregiverCentral is a match-making web and mobile social network that connects a caregiver with another carer of a loved one who’s been in their shoes, will understand their concerns, and will help answer their questions. It connects caregivers by a text and media sharing. 

A more experienced caregiver passes down caregiving tips to a person new to the role of caregiving. Information passed down can range from dealing with tantrums, tips on medication adherence, attending to personal toileting and bathing problems, navigating the healthcare system, processing a health proxy, and many others.

We are building the first digital community of family caregivers that employs machine learning to disseminate cares-specific information amongst this overlooked population. Because we acknowledge very well the investment of clinical social workers in helping family caregivers succeed in caring for their loved ones, our solution is designed to integrate with hospital systems (patient records) to assist the ML algorithms in matching caregivers with each other better. With this system, other caregivers will play a role in passing down information to newer caregivers, thereby alleviating pressure on today's centralized health system.

The fact that we decentralize healthcare support. 

A social network that utilizes machine learning. Our technology is software. Caregiver Central employs artificial intelligence to match-make family caregivers with each other based on their expertise, needs, nature of condition they care for, demographic, etc. We are curating a smart matching social network catered to family caregivers that is a web platform and a mobile-based application.

Our solution is verified by our primary market research with family caregivers, and with clinical social workers across the United States.

We followed Bill Aulet's methods in verifying our hypotheses and received positive feedback from our primary market research interviews. 

The problem we are targeting is specifically caregiver burnout. We identified that this stems from caregiver isolation, and feeling unprepared to take up the role of caring at home. Today, caregivers are provided guidance by packets of informational papers and brochures, with fragmentation and good advice comes by good fortune and by no structure.

Isolation is also a trend, where caregivers often find that their social network stops to understand their situation, and former acquaintances and friends start withdrawing. Caregivers tell us often that when they connect with their “peers” of other caregivers, they feel validated; they feel normal and understood. Caregivers today resort to traditional social networks to congregate and find each other. There exists no vetted solution of this sort that is integrated with the healthcare system. This is what we aspire to be.

Caregiver Central is designed to provide value to family caregivers, clinical social workers, and industry players that will benefit from the data.

Caregivers:

Currently serving 500 caregivers, clinical social workers and clinical case managers through our pilots. We expect to double this number in 12 months time: 1,000 caregivers and clinicians. Our 2024 goal is to impact 3 million caregivers and clinicians across the United States.

Clinical social workers:

Our research shows that social clinical workers are unequipped to give the families the guidance they need, despite being invested in the success of the family caregiver’s homecare outcomes.  It gives them better work satisfaction, less work-load and less stress on the job to extend reliable and tangible support solutions. 

Our research also shows that the recommendations social clinical workers provide are often not structured nor guided by the clinical umbrella they operate under. Therefore, new tools of medication adherence or social support solutions are improvised individually, and learnt about equally individually.

Economic Data Buyers:

We are finalizing our data leverage model with social responsibility to mutually benefit the family caregivers, the data insight readers, and clinicians. We  are in conversations with small and medium sized biotech companies, and expect we will start gaining this customer archetype in two years time.

Within Next Year

• Complete the second pilot with family caregivers of loved ones with dementia.
• Publish an ethically approved study we started this year (approved by the MIT institutional review board)
• Launch our third pilot to test the effect of our solution on 30-day re-admissions. We identified two potential partners who we already connected with and have the support of via our PMR. [Memorial Neurospine in Jacksonville Florida + MassGeneral Hospital Palliative Care & Geriatric Medicine Division]
• Hone the user experience.
• Start exploring innovative means of leveraging the data.

Within Next Five Years

• Have developed an iPhone and Android telephone application.
• Initiate policy partnerships for workplace regulations that will acknowledge circumstances of family caregivers (today, most caregivers resort to quitting their jobs)
• Start exploring deploying the technology globally.

• The current acute barrier is breaking into the world of data exchange. To us, it has not been easy to understand the specific data structure and features needed by our potential economic buyers. This is a financial burden because attending conferences (the solution for this problem) is costly.

• The long-term barrier is innovating in leveraging the data in industry, for caregivers and for social workers and clinicians. PatientsLikeMe paved the way to innovate in this field. Many health data players are not interested in being open about their data practices, interests and outlooks due to a hot data-regulation climate. We believe there's room for further innovating in a newer business model that remains ethical, socially responsible and mutually beneficial.
• Initiating partnerships for policy change that will help make societies better accommodating to the circumstances of family caregivers. For example, today's workplace policies fail to support the re-integration of family caregivers in the workforce after having taken time off for full-time caregiving.

• Understanding the potential of our population data will come from further PMR, by attending more conferences across the nation. Our support from the National Science Foundation helps us in covering parts of the costs, but not all. This is why we are seeking more grants via this Solve application.
• Innovating in leveraging the data responsibly will come from working with the best minds in healthcare and data at large. This also comes with better exposure of our project in conferences, by being covered in the media, and further networking. 
• We believe our solution will be incomplete without lobbying for policy changes. We believe societies today are "dementia illiterate", and today's policies in the workplace and elsewhere reflect this status. We believe our role is incomplete without policy partnerships. This is also why we are applying to MIT Solve.

We are a team of 2 founders

1. Shaikha AlOthman | Full-time Founder, CEO

2. Shiroq Al-Megren, PhD | Part-time Co-founder, CTO
   Human-computer Interaction, Postdoc Fellow, MIT

We received the largest number of prizes possible at MIT Hacking Medicine New York: The Grand Prize, & the Weill Cornell Medicine Award – plus scored with Burke Rehabilitation Hospital the night of first solution presentation.

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Shaikha is a serial entrepreneur with 8 years of global public health and policy experience, starting with the Kuwaiti government in planning for an obesity-mitigation proposal. She has conviction that technology has an untapped potential to drive social change in healthcare. She was selectively invited to attend to the US Department of State's Global Entrepreneurship in Summit in 2019 amongst the 1200 hand-selected entrepreneurs worldwide – in recognition of her outstanding efforts in serving social global causes. She has been recognized as a team member that can change the healthcare system in the US by MIT Hacking Medicine, and is an MIT I-Corps program member, sponsored by the National Science Foundation.

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Shiroq is a postdoc fellow at MechE MIT, and she is a family caregiver herself. She is a researcher in human-computer interaction and distributed systems, and designs multiple agent environments to model and sustain communication, knowledge, and decision-making processes. Also dabbled application of artificial intelligence in the design of balancing solutions for evacuation plans.

• Burke Rehabilitation Hospital: Launched a 100-user pilot for caregivers of traumatic brain injury and stroke survivors in Decemer 2018. The solution integrated with the patient's health records to match caregivers with similar cases.
• MIT MechE Ideation Lab: We started deploying a study identifying communication challenges between family caregivers and social workers.
• MIT Hacking Medicine: continuous mentorship by the post-hack team.
• MIT I-Corps: mentorship by the MIT Venture Mentorship Service
• National Science Foundation: micro-funded to attend conferences and complete our primary market research phase.

Prospective Partnerships:

• Memorial Hospital NeuroSpine Center, Jacksonville Florida
  Deploying our third pilot to test solution effect on 30-day re-admissions.
• Division of Geriatric and Palliative Care at Mass General Hospital, Boston Massachusetts
  Deploying a pilot to test the solution in coordination with the patients of the division. This will be our first Alzheimer's/dementia clinically coordinated pilot. 

We identified three customer archetypes:

• Family caregivers are our end-users
  Value proposition: Caregivers go on the website to share a burden they can’t share with others close to them and genuinely connect with people going through the same thing.

• Clinical social worker are our influencers
  Value proposition: Our solution also benefit clinical social workers as an ally resource, because it provides them with a sustainable/reliable source of guidance for families at the point of diagnosis and/or hospital discharge. Our research shows that social clinical workers are invested in the success of the family caregiver’s home-care outcomes.
  

• Biotech & digital health companies are our economic buyers
  Value proposition: We know the market for population health data exists and is strong. We look up to PatientsLikeMe who pioneered in leveraging health data as an ethical revenue stream, and believe there's room for more innovation in deploying data readings. Initial projections: clinical trial recruitment and retention offer by a subscription-based model for smaller emerging biotech companies and CROs (clinical trial organizing companies).

We are now funded by two:

1. Seed-funded by family and friends totaling $25,000, and
2. Grant-funded by the National Science Foundation to cover other primary market research expenses: attending conferences nationwide and finalizing the validity of the hypotheses we proposed.

In the coming 12 months, we will progress on the National Science Foundation MIT I-Corps track to gain further funding to cover our conference and research expenses, as well as gain grants via other applications such as MIT Solve. [We are candidates for an SBIR grant with an endorsement from MIT.]

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We plan to receive our first equity-based angel investment in Q1 2020. In the long-term, our revenue stream is a subscription-based model that serves emerging/small and medium-sized pharmaceutical, biotech and clinical trial organizing companies (CROs).

• Mentorship & Guidance

We want mentorship from the best brains

and technical expertise to help us explore how to best leverage the health data that our platform is generating. Field creativity, business training and better exposure is also needed. We need assistance with media exposure.

• Partnerships

We want partnerships to deploy our third pilot (first for caregivers dementia/Alzheimer's), and partnerships in initiating policy change dialogues. 

Advisory Board Members

Our first pilot was launched with Burke Rehabilitation Hospital for stroke and brain injury survivors (started Dec '18). Our second pilot is with a number of assisted living homes in Massachusetts and New Hampshire (commencing Jul '19). We are looking to pilot with a dementia health institute that acknowledges the involvement of caregivers as a key activity for Alzheimer's/dementia service. We identified two potential partners:

• Mass General Hospital - Geriatrics and Palliative Care Department
  
  

• Mary S. Easton Center for Alzheimer's Research at UCLA (the pioneers in directing philanthropy to Alzheimer's disease management as opposed to finding a cure)

AI is at the heart of Caregiver Central. AI is what creates the match-making feature of family caregivers with one another. The feasibility of the platform for the family caregivers relies on the quality of the AI technology we employ, where the technology must grasp the need of the user and successfully match the mentor and mentee. Caregiver Central’s success is at the core of the workability of the technology. Our current AI technology cannot accommodate our growing user-base. We will employ our first AI consultant and programmer team upon completing our third pilot at the beginning of 2020. This is where the AI Innovations Prize funds will be directed.

More than 75% of all family caregivers in the US are female, and the statistics are consistent globally. Female caregivers may spend as much as 50% more time providing care than males, according to the Institute on Aging (2016). Unfortunately, the burden of informal care is largely a female global problem.

Being a full-time caregiver often leads to a significant change in life and career paths. Many caregivers sacrifice their careers and quit their jobs (with an absence of work policy regulations), suffer financial restrain, move homes, etc.

The Women Prize will be utilized in improving the user experience we currently employ on our web portal, advancing our AI technology by employing our first consultant and programming team, and increase our presence in nation-wide conferences.

Caregiver Central uses AI to create the match-making feature of family caregivers with one another. The feasibility of the platform for the family caregivers relies on the quality of the AI technology we employ, where the technology must grasp the need of the user and successfully match the mentor and mentee. Caregiver Central’s success is at the core of the workability of the technology. Our current AI technology cannot accommodate our growing user-base. We will employ our first AI consultant and programmer team upon completing our third pilot at the beginning of 2020. This is where the Innospark Ventures Prize funds will be directed.

We are building the first digital community of family caregivers that employs machine learning to disseminate cares-specific information amongst this overlooked population. Because we acknowledge very well the investment of clinical social workers in helping family caregivers succeed in caring for their loved ones, our solution is designed to integrate with hospital systems (patient records) to assist the ML algorithms in matching caregivers with each other better. With this system, other caregivers will play a role in passing down information to newer caregivers, thereby alleviating pressure on the centralization.

Today, the details of caring for a loved one is not centralized. Tips and tricks on how to handle the many faces of dementia lay amongst the caregivers who experienced the difficulties and improvised to find working solutions. Our aim is to maximize the dissemination of this information through an intelligent network of sharing, dedicated to family caregivers across the United States.

We thrive on the vested interest of family caregivers whose fuel burn to lend a hand to newer caregivers; we thrive on the vested interest of sincere social clinical workers and clinical case managers who find it daunting to not know how to serve family caregivers in their everyday job. 

The Morgridge Family Foundation Prize will be used to launch our first health-systems integrated pilot for dementia caregivers in the United States.