To Know Me: giving voice to people with special needs.

Despite tremendous advances in healthcare, challenges in accessing care persists for people with special needs. Heath care workers interact with these populations in many settings, from direct care workers to surgeons in the operating room. While we may know the diagnosis and have access to medical information, often times we do not know about the person under care from their perspective, one of the biggest barriers to accessing quality care.  To Know Me captures the voice of the person - who they are, what their concerns and issues are with respect to their care - and provides this to care workers at the point of care.   This person-centered platform is secure and can connect with health records and be used in any care setting from the hospital to the clinic and the home.  This sublimely simple solution will positively impact millions of people around the world if properly scaled.

Many vulnerable populations may not be able to express their wants and needs and therefore may not be cared for in the way they wish.  This includes people with autism or dementia – 125 million people for these two groups alone, a number which is increasing every year. Healthcare institutions have gotten very good at diagnosing and treating the illness, but not the person, especially in settings with frequent staff turnover. 

Consider the power of having instant access, i.e. at point of care, to what is most important to a person with autism who may lack verbal communication skills, who may express frustration by injuring himself, but who may be easily calmed with a familiar object. These challenges complicate equitable access to healthcare. 

Much of the care for this diverse population is delivered by caregivers, a largely unregulated workforce, who often don’t know clients well, understand how to communicate, or know their preferences and how they wish to be treated while receiving care. The voice of the person at the closest point of care ensures that what’s most important to a person is known to those providing care. Improving person-centered, humanized care reduces adverse events and improves quality of care.

To Know Me works to improve Person-Centered Care for people with intellectual disability, autism, acquired brain injury, mental health disorders, dementia and other conditions, who experience barriers to equitable access to healthcare and for whom dramatic health disparities abound. To Know Me and its partners currently provide a broad range of direct services, including health care, to these diverse populations in healthcare, residential treatment and community-based living settings. Key to the success of these services is understanding who the person, their values, beliefs,  individual needs, information which must often be gathered through indirect means when clients lack verbal communication ability or cognitive functioning to describe this directly. Even for clients who can express their preferences, wants and needs, being able to quickly access this information on the part of caregivers in daily interactions or in stressful situations offers the opportunity to greatly improve care that is responsive to the individual. Further complicating the situation is the global direct care worker crisis, which results in a workforce insufficient to meet the needs of the tidal wave of people being diagnosed with autism, and increasing numbers of frail elderly and those with dementia who will require services. 

To Know Me is a simple platform that captures the voice of the person, who they are ,what they want their caregivers to know about them.   It is secure and portable and is designed to connect with health records across different care settings, including hospitals, residential treatment facilities, senior care communities, and community homes.  Research shows that person-centered care results in greater patient satisfaction, improved ability to respond to unique needs of each person and improved health outcomes and efficiency of care. 

This web-based digital solution provides care workers instant access to information their patients want them to know about their care which allows people’s personal preferences to be immediately available to direct care workers. To Know Me collects information from the individual through the MyCare™ questionnaire which can be completed by an individual, family member or other delegate, capturing needs and wants including  things that “are important in my life,” “help me feel happy and cope with stress,” “I like to do daily,” “I don’t like done to me,” and “I don’t like people to do around me.” To Know Me is designed to capture ten items, but can be expanded or grouped in any way. Information is formatted in a care-professional - friendly display - MySnapshot™, and recorded in a QR code, which can be set up to limit access only to those who should have it, and which can be read by any smartphone by a caregiver as they enter a room or home. QR code can  be sited be on wall, bedsteads, on client jewelry to ensure closest points to clients

To Know Me will be tailored to the needs of different populations through this project. Experts in the field of healthcare, mental health, aging and autism services will inform the adaptation of the tool. Responses to the survey can be updated any time, and dashboarding of the survey is available.  The profile can be linked to a unique patient identification number. Phase two will use blockchain to store data, and provide users ownership and control. In addition, data analytics will allow for identifying areas for improving care practices and reducing costs. The technology has the potential to be transferable to any population, any country and any service setting and keeps the voice of the client front and center and gives a much-needed tool to a largely unregulated workforce that provides care to the most underserved. 

Our solution is innovative in that it uses simple technology to solve the complex problem of how to provide Person-Centered Care for vulnerable and underserved populations, resulting in improved satisfaction and outcomes. 

While advances have been made in healthcare and healthcare delivery, less progress has been made to improve the ability of providers and non-professional caregivers to provide Person-Centered Care. Expensive and complicated health records capture lots of information but not a snapshot to inform workers in an instant about details that will enhance the relationship with the client. 

According to the World Health Organization, Person-Centered Care is “an approach to care that consciously adopts the perspectives of individuals, families and communities and sees them as participants as well as beneficiaries of trusted health systems that respond to their needs and preferences in humane and holistic ways.”  

Research has shown that without Person-Centered Care, adverse events are more common, miscommunication is more likely, treatment is less effective, recovery takes longer, cost of care is higher and satisfaction is lower. We have complicated electronic health records and individual service plans for people with complex needs, but no way to distill the most basic information a person wants healthcare providers and caregivers to know about her. 

To Know Me is very simple, combining existing technology (QR Code) with General Data Protection Regulation data protection, ability to be HIPAA compliant, and to selectively give access to information to individuals or groups as a security measure. 

The core technology used to support To Know Me includes behavioral designand social networks. The technical execution consists of HTML5, CSS3, Javascript and Ajax for the front end, MySQL database, and Java, RESTful web services for the back end.  The intention is to use blockchain to store the data, in the next phase of the project. Finally, once the project is scaled sufficiently, big data learning opportunities will emerge, which will contribute to the ability to measure efficacy, outcomes and cost savings.

To Know Me is deceptively simple yet meets a fundamental need. “I want people to know my Mom like I do, so that she feels loved and recognized and they can provide better care,” said a daughter whose mother has dementia, and who has difficulty communicating. 

This technology is inexpensive and has the potential to get critical information patients would like their caregivers to know instantly into the hands of this workforce which experiences turnover and shortages, and thus may not know their clients well. 

None of this information is captured by electronic health records (EHR), systems which house vast amounts of detail but which themselves are often largely unusable for caregivers.  However, a person-centered approach to care has been show to deliver better outcomes while also reducing cost of care.  Thus providing care workers with easy-to-access person-centered information at the point-of-care has the potential to transform care. With this information, direct care workers can easily overcome and redirect unsafe practices because of poor understanding and lack of ability to communicate with people with barriers to communication. 

To Know Me is in the pilot phase.  The product for with special needs will be implemented by our partner organizations which currently serve 20,000 people with intellectual disabilities such as autism, acquired brain injury, dementia and mental health disorders.  The project team anticipates serving 500 people in the first-year initial pilot program and then expanding implementation further.  It could serve as an important tool for most if not all of the 20,000 people under care by our partners.

With funding from the Solve Challenge and in conjunction with funding from profesional investors, the pilot conducted in the first year of this project will adapt survey questions for different populations and settings, and test the efficacy of the tool towards the goal of improving the ability to provide Person-Centered Care. The process will entail identifying pilot sites and participants, developing an evaluation plan, finalizing the technology, purchasing equipment, designing training for direct care workers, health care providers and other staff, conducting training, designing marketing materials for families, and conducting the pilot. The technology is vendor-neutral and so will not rely on any one existing electronic health record or other information system. Improvement in the ability to provide Person-Centered Care will be measured by client satisfaction, reduction in adverse events, and improved health outcomes. 

In five years, we anticipate serving 1 million people across a network of providers within North America, Latin America, Europe and Asia as we seek to transform the quality care and improve outcomes for underserved groups.

Our goal is to partner with healthcare providers around the world to establish a new global standard that provides easy-to-use, technology-enabled tools supporting person-centered care at the bed side.

The applicants have been in the healthcare industry all of their professional lives; each member has the specific knowledge and contacts around the world to engage direcly and get platform traction in key markets where the challenges and needs are great.  We expect to leverage our extensive global networks to partner with key groups to extend our reach and benefit more people, with an expanded customer base in the tens of millions around the world.

In addition to driving and supporting platform adoption with key groups in North America, Latin America, Asia and Europe, as a social impact organization we will implement special programs designed to provide platform access to economically challenged communities, notably in Africa but anywhere. To accomplish this, we will first partner with key influential groups in the U.S., Australia and Switzerland in the first year and then leverage this to progressively expand in additional countries and regional and global level over the next five years.

Longer term, other person-centered dimensions to To Know Me are foreseen which, combined with our existing product focus, will be highly relevant and with the potential to attract required funding.

We anticipate that some service providers will be reluctant to incorporate this platform into their programs because of concerns are cost or complexity, and similarly that some staff will be reluctant to try something new.  Gaining the buy-in of both is critical to the ability to scale this project. The technology must be designed to be very cost effective so that it will be able to be scalable and widely usable. We also will need to overcome the barrier of ensuring that staff have the appropriate technology (e.g. smartphones) on hand to be able to successfully read the MyCare™ survey results and the MySnapshot™ profile. To Know Me technology will be vendor-neutral and so will function independently of any electronic health record system that service providers, hospital systems and others already use, but potentially could be further developed to work with any system. 

Sustainability is another barrier we will need to overcome.  Raising sufficient funds to fully develop the project is another potential barrier.  This project has the potential to address a global issue and is highly scalable. However, we anticipate that gaining access to capital and the right networks to help drive and support launches and commercialization may be challenging.  

Longer term, other person-centered dimensions to To Know Me are foreseen which, combined with our existing product focus, will be highly relevant and with the potential to attract required funding.

We are confident that we can overcome the technology adoption barrier. The team has significant experience working collaboratively with local, regional, national and international organizations to leverage expertise and garner resources to carry out sophisticated projects that have had major impacts on access to care for vulnerable populations and health disparities. The expertise of the team members will allow for careful planning of the pilot, thoughtful design of the adapted survey questions, and access to a broad network of service providers who will enthusiastically embrace a new technology that can help address the gap care delivery to vulnerable populations.

We are also confident that we can overcome the funding barrier.  To do this,we will carefully execute against funds in hand and only expanded our activities and further funding is realize to ensure long term sustainability of our initiative.  The biggest component of cost of our business is people costs, so we will carefully manage headcount growth and measure this against revenues and funding level.

The team has also had good success in raising funds to support initiatives and will bring expertise in this area to this project.  We have developed networks of investors in the U.S., Europe and Australia that we expect will find this project of interest to them based on discussions held thus far.  We see the MIT Solve award, should we be fortunate enough to receive it, as a major boost in credibility with the investor community and something that would facilitate our achieving the required long-term funding needs.

We are a Swiss-based social impact company and additionally intend to register as a B Corp.  As such, we are unapologetically profitable as this ensures our sustainability and allows us to serve the greatest need possible, globally.  At the same time, we are focused on meeting our mission of helping people to thrive by supporting Person-Centered Care.  We will use the World Health Organization’s classification system to set pricing to allow our platform to reach underserved and economically depressed communities everywhere to elevate quality of care.

Currently ten people are working on this team.  These include representatives of Woods, our partner organizations, and To Know Me. Key members are all engaged in this initiative part-time and include:

Peter Nicholson - Co-Founder, To Know Me (business strategy and execution)

Gary Morton – To Know Me (strategic design and technology execution)

Frances Hughes – Co-Founder, To Know Me (strategic leadership and engagement with healthcare community)

Tine Hansen-Turton – CEO, Woods Services (health and human services provider)

Liz Hayden - Woods Services (communications and marketing)

We have other support staff working a part of team.

To Know Me and Woods Services initially came together in a quest to address a significant gap in healthcare – the ability to improve care, outcomes and satisfaction for people with disabilities. To Know Me is a Swiss-based mission-driven company focused on creating easy-to-use technology-enabled tools that enable person-centered care at medical facilities, clinics or the home. To Know Me partners with governments, health care organizations and care providers to support them in their goal of providing best-in-class care in a cost-effective and time-efficient manner. 

The core team is comprised of Swiss-based To Know Me and Woods Services, which is the parent organization of 5 affiliates which provide services regionally in Pennsylvania and New Jersey. Woods Services also co-founded a consortium of ten large providers of approximately one billion dollars in health and human services to over 100,000 people with disabilities, several of which have a national reach within the U.S. These organizations will be the initial partners for the pilot study, as they provide services to people with a broad range of disabilities and communication barriers in a variety of settings. 

The core team plans to engage in the near future ANCOR, the national membership organization in the U.S. of 1,600 providers of services to people with disabilities, as well as the Washington, D.C-based International Alliance of Carer Organizations, whose mission is to promote caregiver well-being, increase awareness of the role of carers internationally, and promote best practices in caregiving programs.

Our person-centered platform supports improved care and outcomes in a cost-effective manner.  Engaging on our platform will allow patients to express their needs and concerns concerning their care and then communicate this information directly to care workers at the point of care.

The initial focus of our business model is based on a business-to-business approach in which we provide access to the platform for annual fee together with a per-patient fee based on the number of patients anticipated to be enrolled. Our target market is hospitals, clinics and institutional care facilities where were can operate at scale.  The market-pull strategy will engage patients indirectly through health care providers.

The second stage of our commercial strategy will be to focus on direct consumer engagement by elevating awareness through special interest groups and social media that generates consumer interest and direct enrollment in the platform.

Part of the pathway to sustainability includes the value proposition of this approach to improving Person-Centered Care.  As quality and satisfaction improve, better outcomes carry with them opportunities for greater revenues through incentives . 

Health care systems around the world, including in the U.S., are moving steadily towards value-based reimbursement models which pay for outcomes rather than merely services.  Improvements in quality of outcomes enabled by our platform will provide a strong foundation for applying for increased rates for reimburseable services.  In addition, cost savings will be realized through this technology.

Our platform scales to meet a global need.  We will translate into the world’s major languages to help support implementation broadly.  Because of the inherent efficiencies of a digital platform, once created, the tools we develop will provide increasing levels of profitability and thus create a sustainable future for the business.

The other component of sustainability is careful daily expense management and general management of the business.  We will carefully execute against funds in hand and only expanded our activities and further funding is realize to ensure long term sustainability of our initiative.  The biggest component of cost of our business is people costs, so we will carefully manage headcount growth and measure this against revenues and funding level.

The To Know Me team is applying to MIT Solve because of its global focus and its alignment with the goals of Solve to address the problem of equitable access to health care for vulnerable populations. The approach of Solve in linking together organizations and companies which can share best practices, resources and ideas is in line with the collaborative approach of the To Know Me partners. 

Being slected as a winner of MIT Sove 2019 would provide us increased visibility, endoursement and credibility and access to networks. The funding associated with MIT Solve will be very useful to help fund the pilot of the technology, with the ability to leverage this seed funding to gain exposure to a global network investors and partners.

We see the MIT Solve award, should we be fortunate enough to receive it, as a major boost in credibility with the investor community and something that would facilitate our achieving the required long-term funding needs and help us be perceived as more credible as a technology and need based solution.

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In addition to the membership and advocacy organizations described above, this project would greatly benefit by partnering with senior services agencies and hospital systems in order to test the tool in a broader range of settings, and electronic health record technology companies, with the goal of developing the best ways to coordinate the two forms of technology.

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