1er premio: Registros para todos: Reg4ALL

Congratulations! This Entry has been selected as a winner.

1er premio: Registros para todos: Reg4ALL

Washington, Estados UnidosWashington, Estados Unidos
Año de Fundación:
1986
Tipo de organización: 
Sin fines de lucro / ONG / Sector Civil
Presupuesto: 
$1 million - $5 million
Resumen del Proyecto
Presentación del Proyecto!

Resumen conciso: Ayúdenos a presentar esta solución! Proporcione una explicación en 3 o 4 frases cortas.

Reg4All: The registry for all people, all diseases, all health.

The world's first participant-controlled, cross-disease health data registry. Because the haystack is made of needles.

Giving participants control, accelerating research, allowing support and trials to flow to the people.

Reg4All: El registro para todo el mundo, todas las enfermedades, toda la salud.

El primer registro atendiendo a varias enfermedades controlado por los participantes. Porque el pajar se construye de agujas.

Dando el control a los participantes, acelerando la investigación, permitiendo que el apoyo y los ensayos llegan a la gente.

About Project

Problema: ¿Qué problema está tratando de abordar este proyecto?

People are looking for needles in the haystack, but the haystack is made of needles! We are missing the health research world's greatest assets: people and their health data, unified across all health and disease. People's (patients') health information must become easy to assemble, and must be done cross-disease and with the participants in control of what they share. Only then will we create the next breakthroughs in research.

Solución: cuál es la solución propuesta? Por favor sé específico!

The world's first ever participant-controlled, cross-disease registry for health and disease data.
Impact: How does it Work

Ejemplo: Guíenos a través de un ejemplo/s específico/s de cómo esta solución hace la diferencia; incluya sus actividades principales.

We are helping fuel the movement toward individuals, families, and communities reclaiming control of their health. We invite them to control the registry that contains their health data. Respecting each participant's sharing/privacy desires, we help researchers engage with people and their data: to generate research hypotheses, discover research cohorts, enroll studies/trials, and achieve breakthroughs more quickly than before.

Impacto: ¿Cuál ha sido el impacto del trabajo hasta ahora? Asimismo, describa el impacto previsto en el futuro para los próximos años.

- Thousands of users - Unlocking cooperation across ecosystem - First clinical trial ready preparing to use system - First data-based study ready to use system - Renewed hope from participant communities - Great entusiasm from the research community
Sustentabilidad

Plan de Sustentabilidad Financiera: ¿Cuál es el plan para asegurar la sostenibilidad financiera de esta solución?

2013: Tens of thousands of consumer participants. Tens of studies. 2014: Hundreds of thousands of consumer participants. Hundreds of studies. 2015/2016: Millions of consumer participants. Thousands of studies.

Mercado: ¿Quién mas está abordando el problema aquí descrito ? ¿Cómo difiere el proyecto propuesto de esos enfoques?

So many narrow or incomplete registries in the world. Some of those organizations may feel threatened by how Reg4All puts control in the hands of participants. With so many registries out there, we see some competition for the attention of consumers and researchers. But our marketing/attraction strategies will be quite different.
Equipo

Historia fundacional

My children were diagnosed with a genetic condition in 1994 and there was no treatment. We discovered there was no system for creating treatments. The aha came when I realized that while researchers were trying to find needles in haystacks, the haystack is made of needles - all citizens are able and willing if they are given the right tools - data sharing and access privacy preference tools.
Nombre de la organización

Genetic Alliance

Sobre ti
Sobre ti
Nombre

Sharon

Apellido

Terry

La información que brindes aquí será usada para llenar las partes de tu perfil que hayan sido dejadas en blanco, como intereses, organización, y sitio web. Ninguna información de contacto será hecha pública. Por favor desmarca esta casilla si no deseas que esto suceda..

Innovación
Explica de qué se trata la “innovación”, por ej.: ¿es la idea y/o el modelo que utilizas para lograr tu misión, o tu comprensión sobre la población objetivo, etc.?

It is time for individuals to reclaim their health, like they claim every other aspect of their lives. The time for paternalism is over. It is time for individuals, families and communities to drive research— to decide who will use their health information and why. To be drivers of research. Then incentives will align. Researchers strive for promotions and funding, industry strives for blockbusters and profit, and even advocacy organizations often strive to sustain their organization. Reg4All was created with the radical idea that patients and researchers should be able to join an online network that would link the two together in the spirit of sharing information for the greater good. Patients gain access to potentially life saving clinical trials, researchers gain access to a centralized database of participants, and data will be freely shared (respecting each participant's custom sharing/privacy settings, of course!) in BOTH directions.

This idea changes the way people view their health, pushes researchers to a 2-way relationship with patients, and transforms a broken system that does not serve enough of the population.

Describe cómo se diferencia tu modelo de innovación en el campo, respecto al de cualquier otra organización.

Disease advocacy organizations have attempted registries. But lacking committed researchers, often do not meet their data usage goals, and are hard to sustain financially. Commercial orgs also attempt registries, but find it difficult to sustain an environment of trust. And both advocacy and research communities too often take a single-disease approach.

Reg4All is cross-disase. It is participant centric, with trust as a founding principle. And it is designed for the widest proliferation, helping create and sustain new relationships between participants and researchers.

¿Qué tipo de sistema operativo y factores internos de la organización hacen que tu innovación sea un éxito?

We operate on a 10+ year long foundation of openness, systems thinking, and respect of persons. We are a non-profit org that works like a lean startup. We surround ourselves with helpful voices. For example, we convened the ethics team for this project at its founding, making participant-centric governance a founding principle rather than just tacking on ethical oversight at the end.

We apply to health habits we've learned from the networked world. Less like traditional health research, more like facebook and twitter.

¿Cómo te aseguras que innovas constantemente a la luz de (potenciales) desafíos externos, o cuál es tu plan de crecimiento?

Embracing Eric Ries' Lean Startup philosophies (Eric is a friend of one of our founders), we progress through product experiments. We see what works and we grow it. We see what doesn't work, and we adapt. We weekly (and sometimes daily) learn from our metrics and our qualitative feedback.

Think, Make, Check. Repeat. Innovation is a way of life, not a project.

País de la organización

, DC, Washington

Modelo de Negocios
Desafío sistémico que tratas de superar (selecciona sólo uno)

Desarrollar nuevos incentivos en los del sistema de salud para crear mayor valor hacia la sociedad o

Área de salud (mercado objetivo) donde se encuentra la necesidad (selecciona solo uno)

Cuidado de enfermedades poco frecuentes

Categorías de la atención medica que estés cubriendo [selecciona todas las que correspondan]

Prevención, Detección, Intervención, Seguimiento, Cuidado a largo plazo, Integración social.

Etapa que mejor aplica para tu solución [selecciona sólo una]

Iniciado y en crecimiento (el piloto ya está operando y se ha empezado a expandir)

Estrategias centrales de tu modelo de negocios (selecciona todas las que correspondan]

Enfoques de cambio conductual a nivel individual, Diseño centrado en el paciente, Re-diseño del sistema público de atención de la salud, para una mejor eficiencia (en términos de procesos, estructura, etc.), Nuevos/redefinición de roles de prestaciones de servicio de atención de la salud, Nuevos enfoques de distribución de productos y servicios de salud, Alianzas alternativas (entre jugadores tradicionales y jugadores externos de la asistencia de la salud), Nuevas estrategias financieras para la salud.

Por favor especificar
Herramientas más relevantes que estés utilizando para implementar las estrategias destacadas arriba [selecciona sólo dos]

Tecnología, Nuevas habilidades, Formación/capacitación, Financiamiento comunitario.

Por favor especificar
¿Cuál es tu propuesta de valor?

For consumers: add your piece to the health puzzle and let support and research come to you.

For researchers: a high-engagement source for growing research cohorts

For disease advocacy orgs: create deep, lasting connections with your constituency and accelerate research breakthroughs

¿Quiénes son los beneficiarios se los que se dirige tu trabajo?

- Consumers
- Researchers/Pharma Cos
- Disease Advocacy Organizaions

¿Qué enfoques utilizas para llegar a ellos?

PR
Links from partners
Viral loops
SEO
SEM
Events

¿Cuáles son tus actividades principales?

Developing systems and user experiences
Operating databases
Exercising ethical governance
Attracting consumers & researchers

¿Qué otros desafíos – individuales, organizacionales o ambientales – estás actualmente enfrentando o que podrían impedir el éxito futuro de tu emprendimiento y cómo planeas superarlos?

Genetic Alliance does not have very much experience running consumer-facing web products, and doing good branding and marketing. This is why we brought in an Entrepreneur-in-Residence who has deep expertise in these areas.

We also need more cash investment during the start-up phase on our way to reaching financial sustainability.

Describe brevemente tu estrategia de crecimiento futura

CONSUMER SIDE: start with our core audience in rare disease. Use viral loops attract many more. Event marketing, SEO, SEM.

RESEARCHER SIDE: start with trials most desperate to enroll. Letters to researchers/medical centers. Event marketing. SEO, SEM.

¿Qué dimensiones de crecimiento estás actualmente focalizando para tu innovación? [selecciona todas las que correspondan]

Nuevos clientes grupo/s, Nueva(s) región(es), Nuevo(s) mercado(s)/país(es).

¿Qué hace que tu negocio esté “listo” para crecer?

We have proven with a pilot that our approach works. We are receiving high levels of interest from all quarters. We have a proven, collaborative team executing. We are using lean startup techniques and will execute micro- or macro-pivots as we grow.

¿Cuáles son tus objetivos centrales de crecimiento?

2013: Tens of thousands of consumer participants. Tens of studies.
2014: Hundreds of thousands of consumer participants. Hundreds of studies.
2015/2016: Millions of consumer participants. Thousands of studies.

País/es en los que opera la organización

, DC, Washington

Impacto social
¿Qué métodos cuantitativos de impacto social estás aplicando (si estuvieras aplicando alguno)?

We have created a whole second 'product' to watch, mine, and learn from online and usage metrics (including visitors to site, conversion rate to account users, # abandoned accounts, engagement on site per visit, source of visitors, success of marketing campaigns, successful research searches, etc.).

We are in the process of building other metrics to measure more upstream impact such as clinical trials enrolled and at what speed, research questions formulated by individuals and communities and so on.

Where possible, we are thoroughly metrics-oriented.

In addition, we are commissioning longitudinal studies about use of Reg4All.

And we are seeking ways to quantify impact on the larger ecosystem.

¿Tu solución podría operar en otros conextos o regiones? Si así fuera, ¿en dónde?

It is designed from the ground up to be global in reach and in service. Health and disease know no national boundaries. We are in discussions for pilot projects in India and China. This solution is particularly pertinent to areas of the globe which are currently being exploited in clinical trials because they are in less regulated countries. This will also leap frog problems we have experienced in more developed countries with a sense of powerlessness and the belief that they are channels that will work to solve that engagement. In less developed countries, individuals have some advantage in that they are not already in rigid structures that have failed in the developed nations. However, they will need simpler access, for example through text based products.

¿Cuál es tu impacto proyectado para los próximos 1-3 años?

In the next 1-3 years we will see a greater number of individuals in clinical trials. We will see those trials enroll faster, and less trials close because of 'low enrollment'. We will see more diverse clinical trials - they will not just be the healthiest quartile of white men, they will include minorities and other underserved communities. We will also see more individuals and communities understand that they can reclaim their health. They can drive the clinical questions in trials that they believe will benefit them most.

Ultimately we will see faster drug and other therapy development, decreasing the 17 year, 90% failure rate for a one billion dollar price tag. Any improvement will save enormous amounts of money.

Sostenibilidad
Explica detalladamente tu estrategia financiera actual

We started with a grant from Sanofi. We added to that some in-house budget to get the pilot completed. In addition, development partners are donating some work.

Next, we simultaneously a) seek additional capital donations to fuel rapid growth ahead of sustaining revenue and b) begin to grow recurring revenue which will eventually sustain the whole project. Our strategy is to price access to data at price points vastly below current market rate. We are looking to iTunes and app store models - volume over high prices. At the present time, a pharmaceutical company might pay between $5,000 and $40,000 to accrue one individual into a clinical trial. We hope to make that price point less than $10 per person, or even better, a sustaining subscription model like Pandora or LinkedIn.

In addition, we are offering a Kickstarter type model for companies who seek individuals in specific disease areas.

We offer tiered pricing for sponsorship for the 13,000 pages in Disease InfoSearch, for links on those pages, and for the 13,000 associated surveys in Reg4All.

And finally, we will drive some pilot programs for companies or academic institutions in specific disease areas for costs well below their current ones.

Reparto de la generación de ingresos del total de ingresos de la organización (en porcentaje)

80%

Ventas directas a pacientes u otros beneficiarios (en porcentaje)

60%

De las posibles fuentes de estas ventas, en la siguiente lista, marca todas las que correspondan a tu estrategia actual

Empresas privadas, Otros beneficiarios.

Tarifas de licencia, por ej., por tecnología/ modelo de franquicia (en porcentaje)

20%

Abajo, marca todas las que correspondan a tu estrategia actual

Fundaciones, Organizaciones no gubernamentales, Empresas privadas, Gobierno nacional.

Contrato de servicio con organizaciones, por ej. gobierno, ONGs (en porcentaje)

20%

De las posibles fuentes de contratos de servicios, en la siguiente lista, marca todas las que correspondan a tu estrategia actual

Fundaciones, Organizaciones no gubernamentales, Empresas privadas, Gobierno nacional.

Explica tu estrategia de generación de ingresos más detalladamente

We earn money through:
- Sponsor ad placement
- Registry services for disease groups
- Subscription fees to researchers

Reparto de la generación de ingresos del total de ingresos de la organización (en porcentaje)

20%

Estrategias filantrópicas que estás utilizando

Estrategia diversificada.

Explica tu enfoque filantrópico con más detalle

Our philanthropic approach has three pathways:
1) We have received unrestricted grants from the family foundations of successful professionals in our field
2) We have applied for and received small grants from public foundations
3) We have competed for prizes in contests such as this and received them on occasion.

Amplia tu selección; explica cómo mantendrás el financiamiento dentro de los próximos 1 a 3 años.

- We will create focused success early on, then market opportunities based on those audience-specific success stories.
- We will grow our revenue channels through combination of great web based interfaces for low-touch revenue, and a small, talented sales/bizdev team for higher-touch opportunities.
- We will constantly watch for new or refined revenue opportunities to seize.

Años de operación

Operando más de 5 años

¿Tu organización ha recibido premios y/u honores? Cuéntanos sobre ellos.

2007:
Sharon Terry won 1st Annual Patient Service Award from UNC Institute for Pharmacogenomics and Individualized Therapy

2009:
Sharon Terry is elected Ashoka Fellow for life.

Genetic Alliance received 2009 Research!America Award.

Genetic Alliance is named in 2009 Washingtonian's Best Places to Work list.

2011:
Sharon Terry is elected to the Institute of Medicine's Board.

Sharon Terry received 2011 Clinical Research Forum and Foundation’s Annual Award for Leadership in Public Advocacy.

2012:
Sharon Terry received 2012 FORCE Spirit of Empowerment award

2013:
Sharon Terry was recognized by FDA as one of 30 rare disease heroes