WiseCommunities – using open innovation to redefine prevention
Location
KidneyWise has designed an interactive, web-based portal – WiseCommunities - that combines proven scientific research with social networking and the power of the crowd to redefine disease prevention. By connecting communities and empowering people and organizations to work together to enact positive change we can impact a community’s health.
About You
Section 1: You
First Name
Leigh
Last Name
Reynolds
Website URL
Organization
KidneyWise
Country
United States, MO, Clay County
Section 2: Your Organization
Organization Name
KidneyWise
Organization Website
Organization Phone
816-931-2801
Organization Address
8330 Ward Parkway, Suite 510, Kansas City, MO 64114
Is your organization a
Non‐profit/NGO/citizen sector organization
Organization Country
United States, MO, Jackson County
Your idea
Name Your Project
WiseCommunities – using open innovation to redefine prevention
Country and state your work focuses on
United States, MO
Describe Your Idea
KidneyWise has designed an interactive, web-based portal – WiseCommunities - that combines proven scientific research with social networking and the power of the crowd to redefine disease prevention. By connecting communities and empowering people and organizations to work together to enact positive change we can impact a community’s health.
Website URL
Innovation
What makes your idea unique?
KidneyWise has two innovative strategies –Healthsourcing™ and WiseCommunities™-- that bring together individuals, industry, government, and organizations to redefine prevention of chronic kidney disease.
The KidneyWise approach is unique, tackling true prevention rather than early detection and treatment. By addressing the underlying determinates (cultural, socioeconomic, environmental), common risk factors (diet, physical inactivity, health illiteracy, obesity, family history/genetics) and associated diseases (hypertension, cardio-vascular disease, diabetes), we see the chronic kidney disease chain and reveal a better way to address it – before it ever starts.
In order to meet this huge need, we need a model of community health promotion, research, and disease prevention that can affordably achieve the necessary scale. By tapping into the wisdom, resources and energy of engaged people and Partner organizations, and motivating collaboration through programs of social networking and technology, we will find and deploy solutions to the problems that initiate the CKD Chain. We call this Healthsourcing.
WiseCommunities™ is the online platform that ties it all together and supports it. We created a suite of simple, easy to use tools that collect groundbreaking data for understanding the needs of a community while building social capital in neighborhoods across the country. The platform functions much like an online game, awarding points and rewards to participants at different levels, encouraging continued interaction. The technology platform collects the data needed by WiseCommunities to identify the barriers to good health and then serves to mobilize the crowd to overcome them and enact positive change.
Do you have a patent for this idea?
No
Impact
This Entry is about (Issues)
What impact have you had?
Since its launch in late 2009, KidneyWise has secured numerous partners, such as the Medical Reserve Corp, Health Occupation Students of America, The Aspen Institute, and America’s Promise Alliance, just to name a few. Like KidneyWise, our Wise Partners are committed to True Prevention and to working together to bring about positive change in our nation’s health. In June 2010 KidneyWise held a Summit in Washington DC where more than 40 of the nation’s thought leaders came together to rethink prevention and begin the work of redefining it. Our partners are integrally involved in the launch of the WiseCommunities platform, phase 1, which is set to take place in early Fall 2010; and KidneyWise continues to be a catalyst and a convener around the issues of chronic disease prevention, spurring on the changes needed to stop chronic kidney disease in its tracks.
Problem
More than 50 million Americans either have, or are at risk, for developing Chronic Kidney Disease. It is more prevalent than both congestive heart failure and diabetes. CKD is a progressive disease that becomes more serious, and more difficult and expensive to treat as it advances. According to the US Renal Data System, the prevalence of CKD has grown 20–25 percent over the last decade. CKD Medicare expenditures have increased 2.6 times, from 10.8% of the total in 1993 to 27.6% in 2007.
The critical issues for CKD, as reported by The National Institute of Diabetes, Digestive and Kidney Diseases: (1) Most people with the condition don’t know it; (2) Kidney disease is often silent until late stages, but if found early, a lot can be done to prevent kidney failure; (3) By 2020, nearly 785,000 people will need kidney failure treatment at a collective cost of $53.6 billion.
Actions
A key first step for success is to increase public awareness of CKD and to generate interest in the interactive technology platform. KidneyWise has established collaborative partnerships with National organizations that have large constituencies to launch the WiseCommunities platform and to initiate the Healthsourcing model. The resulting “network of networks” will be leveraged to extend the reach of the WiseCommunities platform. This “seeding” approach will build exponentially, as people and organizations begin the natural process of outreach inherent in growing social networks.
The second key success factor is the ability to organize and interpret the data collected through the platform. KidneyWise will track and analyze the responses given as a part of the platform interactions. All users who log in must provide a zip code, which will allow KidneyWise to organize responses by community down to the zip code level allowing the areas with the greatest need to be identified.
Results
The initial ‘network of networks’ will give us access to over 350,000 potential participants. These participants will act as our citizen scientists, gathering and inputting data via validated methods on social capital and health challenges in their home and community. They will also act as recruiters by inviting their family, friends and associates into the platform. The anticipated result is that WiseCommunities.org will amass a group of users very quickly because of the size and depth of our partner networks.
Another anticipated result is that the extension of the participation in the platform will allow us to identify our charter communities. A charter community is one that would benefit from programs and activities to help build social capital and address a community’s unique health issues. Organization of the responses obtained through the interactive platform will allow us to pinpoint areas where our programs can have the largest impact on CKD.
What will it take for your project to be successful over the next three years? Please address each year separately, if possible.
The KidneyWise first three-year plan focuses on two strategies: the research and continued development of the WiseCommunities program (both online and in charter communities) and an awareness and engagement campaign to disseminate the message that while CKD is a prevalent and serious disease, it is largely preventable.
The plan is organized in three phases:
Phase 1: Deployment of Citizen Scientists & Data Gathering
1. Beta Testing of the platform
2. Community Mapping: begins as a part of the beta launch
3. Data Analysis: organization of responses. We anticipate having an appropriate level of data during the first six to eighteen months of the program
4. Charter Community Identification: once the data have been analyzed, we will identify our charter communities. A charter community is one that would benefit from programs and activities to help build social capital and address a community’s unique health issues.
Phase 2: Local (Charter Community) Program Roll Out
1. Establish leadership and partners in Charter Communities. This will consist our partners’ local leadership and chapters, government officials, community activists, online leaders (those who are fully engaged in the platform and rose to the top), local business leaders, etc.
2. Assess local resources and socio-economic barriers or opportunities
3. Identify needed local projects that will help strengthen social capital
4. Complete community development projects
5. Continue to analyze data throughout the life of the program to adapt our programs to each community’s unique and changing needs
Phase 3: Measure HEALTH achievements
At this point, we will be able to show how the activities put into place have directly affected the health of the communities in which they have been implemented. This information will be used to strengthen the program, re-energize and further engage the volunteer “citizen scientists” and continue the work of positively impacting our nation’s health.
What would prevent your project from being a success?
The most critical success factor for KidneyWise is acquiring the necessary resources to fully complete the interactive technology tools. Second to that is a need for seed funding that will underwrite the promotion of the platform, both through our partner networks and the community at large. Completion of the platform is essential in the evolution of the WiseCommunities model. The initial framework of the platform is completed, but additional development – specifically the features that will allow us to properly analyze the data and drive further action in the community – remains to be built. Furthermore, without a means to drive the end-user to the platform and engage their participation, the goals can not be met.
How many people will your project serve annually?
More than 10,000
What is the average monthly household income in your target community, in US Dollars?
$1000 - 4000
Does your project seek to have an impact on public policy?
Yes
Sustainability
What stage is your project in?
Operating for less than a year
In what country?
United States, MO
Is your initiative connected to an established organization?
Yes
If yes, provide organization name.
KidneyWise
How long has this organization been operating?
Less than a year
Does your organization have a Board of Directors or an Advisory Board?
Yes
Does your organization have any non-monetary partnerships with NGOs?
Yes
Does your organization have any non-monetary partnerships with businesses?
Yes
Does your organization have any non-monetary partnerships with government?
Yes
Please tell us more about how these partnerships are critical to the success of your innovation.
In order to stem the tide of chronic kidney disease, a collaborative effort is essential. The KidneyWise approach relies on building networks of concerned individuals, medical professionals, health organizations, local, state and federal governments, as well as the corporate community all linked through the WiseCommunities platform to spread the word about CKD as well as collaborate on prevention initiatives, and influence policy.
KidneyWise continues to recruit and rally the world’s best thought leaders, medical researchers, corporate entities and entrepreneurs for the common good of stopping chronic kidney disease in its tracks. WisePartners have access to mobilized resources and volunteers as well as the millions of people that we have engaged through our national initiative. Together we can achieve positive outcomes while our partners receive recognition for their roles in building healthier communities and a healthier nation.
What are the three most important actions needed to grow your initiative or organization?
1. Secure funding needed to complete the WiseCommunities platform
2. Engage our partners and their memberships in the beta testing and subsequent launch of the WiseCommunities platform, and the related community engagement the platform affords that will ultimately redefine prevention of chronic (kidney) disease in the nation.
3. Review and analyze the data gathered, so that improvements to the platform can be made, directed action can be taken (based on what the data tells us), and a positive impact on health can be shown (reported back to our members, our partners, and to the general public as a rallying cry to join the movement and begin to enact positive change!)
The Story
What was the defining moment that led you to this innovation?
KidneyWise is a subsidiary of The PKD Foundation (PKDF), established in 1982 with a focus on the leading genetic cause of CKD, polycystic kidney disease (PKD). In 2008, the PKD Foundation decided to respond to the growing need of more than 50 million Americans who are affected by Chronic Kidney Disease. In 2010, KidneyWise was launched with an innovative approach to catalyzing the “crowd” to prevent CKD, which is reaching epidemic proportions.
We began at the end – CKD stage 5 or renal failure – and began tracing the problem back to its roots. Through persistent and aggressive research and investigation into what we now call the “CKD Chain” we found our way to the Society for Medical Anthropology and the science of social capital. These disciplines have shown that attention to local and cultural factors is crucial - not just good medications and medical care - since people who are not personally and culturally engaged in true prevention will not respond to standard messages of “eat better, exercise, and get screened.”
A ground swell of work on social capital has firmly established its relationship to population health, and that intelligent efforts to raise social capital, and to deploy it in particular ways to impact health, are our best strategy for positively impacting the physical condition of our citizens. We just needed to find a means to deploy this methodology that was both compelling and scalable. That's where Healthsourcing and WiseCommunities come in - through both online and on-the-ground strategies, they offer an innovative, collaborative, and bold new approach. It has intelligent social science combined with the "legs" of national social networking and it holds the power to change the health of this nation in a ground-breaking, meaningful, empowering and economical way.
As a living kidney donor, Leigh Reynolds, executive director of KidneyWise, stands firm in her belief that something can and must be done to put an end to the needless suffering caused by chronic kidney disease. She was merely acquainted with her recipient when she decided to donate one of her kidneys to him in 2008. Since that day she has determined that we must change the course of CKD in this country and she sees her role with KidneyWise as the best means to that end.
Tell us about the social innovator behind this idea.
The KidneyWise idea and organization is the culmination of the work of a team of social innovators. Meet just a few of them below:
Dan Larson:
As President and CEO of the PKD Foundation since 1993, Mr. Larson is a recognized leader in the chronic kidney disease arena. From Washington, D.C. to the halls of academia to the philanthropic community, he has been instrumental in developing a worldwide network focused on PKD. Dan serves on numerous boards and steering committees, including the National Institutes of Diabetes and Digestive Kidney Diseases (part of the NIH); the International Federation of Kidney Foundations (IFKF); World Kidney Day; and others.
Leigh Reynolds, KidneyWise Executive Director:
Leigh Reynolds brings a wealth of experience to KidneyWise having served the non-profit arena in an executive capacity for more nearly two decades. Most recently Reynolds worked as National Director of Special Events at the PKD Foundation. Prior to PKD, Reynolds was Vice President of Development of the National MS Society. Reynolds gained the expertise of knowing how to motivate large numbers of volunteers for a cause, and brings this energy to the KidneyWise mission of re-thinking prevention of chronic kidney disease. No stranger to chronic kidney disease, Reynolds herself became a kidney donor in 2008 when a friend and volunteer from the PKD Foundation was in need.
Dr. Carolyn Smith-Morris, Medical Anthropologist: Dr. Carolyn Smith-Morris is a leading scholar in the science behind the KidneyWise approach to the prevention of chronic kidney disease. Dr. Smith-Morris has authored a critical study of diabetes among the Pima Indians living in the Gila River Indian Community, which has made important contributions to our understanding and preventing of the disease. She is also a leading scholar on the social and cultural contexts of chronic disease with work in the U.S. and Mexico on social capital, structural and economic factors in disease, and community-based research and prevention. Currently Smith-Morris is an associate professor of anthropology at Southern Methodist University teaching several courses in the field.
Sean Flaherty developed the technology for the WiseCommunity platform, an essential tool in the KidneyWise mission of re-thinking prevention of chronic kidney disease. Mr. Flaherty and his teams have developed document management systems for fortune 500 companies and constructed social networking platforms that have revolutionized academic publishing. Most recently, his team created the highly successful MobilityCMS, a content management platform for smartphones.
How did you first hear about Changemakers?
Friend or family member
If through another, please provide the name of the organization or company
50 words or fewer
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