1st Place Winner! Registries for ALL: Reg4ALL
Example: Walk us through a specific example(s) of how this solution makes a difference; include its primary activities.
Impact: What is the impact of the work to date? Also describe the projected future impact for the coming years.
Financial Sustainability Plan: What is this solution’s plan to ensure financial sustainability?
Marketplace: Who else is addressing the problem outlined here? How does the proposed project differ from these approaches?
Founding Story
Genetic Alliance
Sharon
Terry
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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.
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.
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.
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.
, DC, Washington
Realign the incentives in the public healthcare system in mature markets, or
Care for rare diseases
Prevention, Detection, Intervention, Follow-up, Long-term care, Social integration.
Start-up and growth (pilot is successful and starting to expand)
Approaches to behavioral change at the individual level, Patient-centered design, Redesign of the public healthcare system for more efficiency (in terms of processes, structure etc.), New/redefined roles for healthcare service provision, New approaches to distribution of health products and services, Unconventional partnerships (between traditional healthcare players and players outside healthcare), New financing strategies for health.
Technology, New skills, Education/training, Community financing.
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
- Consumers
- Researchers/Pharma Cos
- Disease Advocacy Organizaions
PR
Links from partners
Viral loops
SEO
SEM
Events
Developing systems and user experiences
Operating databases
Exercising ethical governance
Attracting consumers & researchers
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.
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.
New customer group(s), New regions(s), New market(s)/country(ies).
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.
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.
, DC, Washington
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.
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.
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.
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.
80%
60%
Private businesses, Other beneficiaries.
20%
Foundations, NGOs, Private businesses, National government.
20%
Foundations, NGOs, Private businesses, National government.
We earn money through:
- Sponsor ad placement
- Registry services for disease groups
- Subscription fees to researchers
20%
Diversified strategy.
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.
- 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.
Operating for more than 5 years
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
Comments
This is a major change making endeavor. How can you participate, how can you support it? What capabilities would you like to see?