Dialysis Patient Citizens Patient Empowerment
Location
DPC was created to help empower dialysis and pre-dialysis patients and their families to learn more about chronic kidney disease and kidney failure, and to become active participants in their care. We strive to educate others, advocate for effective care policies and help patients achieve a better quality of life.
About You
Section 1: You
First Name
Chad
Last Name
Lennox
Website URL
Organization
Dialysis Patient Citizens
Country
United States, DC, Washington
Section 2: Your Organization
Organization Name
Dialysis Patient Citizens
Organization Website
Organization Phone
202.789.6931
Organization Address
900 7th Street NW; STE 670; Washington DC 20001
Is your organization a
Non‐profit/NGO/citizen sector organization
Organization Country
United States, DC, Washington
Your idea
Name Your Project
Dialysis Patient Citizens Patient Empowerment
Country and state your work focuses on
United States, XX
Describe Your Idea
DPC was created to help empower dialysis and pre-dialysis patients and their families to learn more about chronic kidney disease and kidney failure, and to become active participants in their care. We strive to educate others, advocate for effective care policies and help patients achieve a better quality of life.
Website URL
Innovation
What makes your idea unique?
DPC is unique in that it is truly a patient-led, patient activated organization. We are a nationwide, non-profit organization with membership open only to dialysis and pre-dialysis patients and their families. Our Board of Directors is made up of patients from all parts of the U.S. and from all walks of life. We have gathered inspiring individuals as DPC leaders who are active in their own communities in promoting education, politics, fundraising and other areas. Our Board members decide what DPC should focus on in terms of annual priorities. In recent years, this has included holding “fly-in” events in Washington, DC to educate lawmakers about chronic kidney disease issues, advocating for important state policies, creating a variety of online educational materials, participating in local run/walk events and other activities.
Additionally, through DPC trainings on state advocacy, federal advocacy, working with the media, and grassroots organization, our nearly 400 Patient Ambassadors – those going above and beyond in educating others and furthering DPC’s mission – in 42 states have made significant strides in their home states on informing others about the risks and impact of CKD and how to better manage it.
In each of our activities – whether it is a meeting with a lawmaker, an interview with a local newspaper, or an educational brochure – DPC members represent themselves visually and contextually. Our 22,000 members are the engine that runs our organization, and we are proud to work hand-in-hand with actual kidney disease patients in making an impact on their care.
Do you have a patent for this idea?
No
Impact
This Entry is about (Issues)
What impact have you had?
On the issues that matter to kidney patients (adequate access to care, education for patients, assistance meeting their medical needs, etc.) our members have made their voices heard. For example, at the national level, this has included DPC members speaking out about the new Medicare End Stage Renal Disease (ESRD) payment bundle, giving testimony at the Centers for Medicare and Medicaid Services ESRD Town Hall Forum and successfully advocating for additional funding for the new Chronic Kidney Disease (CKD) IV education benefit. In 2009 alone, DPC members sent more than 2,200 e-mails to Congress, coordinated 126 visits with lawmakers and participated in several Congressional briefings with members and staff. Last year on World Kidney Day, 30 DPC patient members and family members from across the country traveled to Washington DC to meet with members of Congress and staff on kidney care issues. Members have also made an impact closer to their homes. In 2009, DPC members advocated for supportive state legislation and policies in Arizona, California, Washington, Florida, South Carolina, Maryland, Texas and Hawaii; held an Arizona Dialysis Day to educate lawmakers about the effects that would result from Medicaid cuts to dialysis care; and established a tailored online advocacy tool to support the successful passage of Medigap legislation in Florida, which enhances younger ESRD patients’ access to care. As an organization, DPC is proud to provide our members with the information, tools and support necessary to undertake these successful activities.
Problem
CKD strikes individuals of all ages, ethnicities and backgrounds, in the U.S. and worldwide. Currently, 31 million people in the U.S. alone are estimated to have it. Many more have CKD and do not know it, as it often has no symptoms. Complicating things further, CKD and ESRD are very much on the rise as CKD risk factors – high blood pressure, diabetes and obesity – continue to affect more and more people. Through our grassroots and national-level approach, DPC and our members are striving to educate people that they may be at risk for having CKD, let them know what they need to do about it, and if they do have it – what they can do to maximize their own care, maintain a positive quality of life, and advocate for effective kidney care policies on behalf of themselves and others.
Actions
DPC has created an informative and interactive website – www.dialysispatients.org – where patients can learn more about our organization, find educational materials related to CKD management, read about patients like themselves who serve on our Board and patients who are DPC Heroes – those who are an inspiration and truly helping others in the dialysis community, learn more about the latest kidney disease-related news, and find resources for reaching out to public policy officials about kidney disease issues. Our website also offers the DPC Classroom, which offers easy-to-read, helpful tips for patients related to diet and nutrition, heart health and other topics. By educating individuals directly and through our own membership activation, we are reaching people with CKD and those at risk and informing them about what they need to know.
Results
Each year – as a result of our work to empower and motivate our members – DPC’s membership, reach and influence grow. We have more than 22,000 members in all 50 states. Our Patient Ambassador leadership program has grown to nearly 400 members. We have created Ambassadors Coordinating Together (ACT) teams to facilitate collaboration among Patient Ambassadors residing in the same states. And we have just launched the DPC Partners in Care program to facilitate stronger relationships between caregivers and patients. With each new member, we find more excitement, energy and strength in what we are doing. Due to our organization’s ever-growing dedication and commitment to the issues that matter, as an organization DPC is becoming more of a go-to resource for media, policymakers and others looking for the dialysis patient’s perspective.
What will it take for your project to be successful over the next three years? Please address each year separately, if possible.
DPC has worked to ensure that our programs are sustainable. Because we continually have individuals cycling through the organization, we hold our training seminars quarterly—ensuring all members have the opportunity to obtain needed skills and we are building a strong continuous group of expert advocates.
As a non-profit, ensuring proper funding for our activities is always a limiting factor. Having the adequate funds to develop our Patient Ambassador program and provide our members with the resources they need to have their voices heard—this includes conference call lines, flights, supporting materials (brochures, informational sheets, etc.) and meeting facilities—is essential to program success.
What would prevent your project from being a success?
Only a handful of dialysis patients are currently able to participate in our activities. Currently we have been able to host two Washington, DC fly-ins and two state advocacy days annually. However, with additional funding, DPC could expand our activities into additional states and ensure that additional patients have their voices heard.
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 1‐5 years
In what country?
United States, XX
Is your initiative connected to an established organization?
Yes
If yes, provide organization name.
Dialysis Patient Citizens
How long has this organization been operating?
More than 5 years
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?
No
Please tell us more about how these partnerships are critical to the success of your innovation.
With 31 million Americans suffering from CKD, it is impossible for one organization to represent all these individuals. DPC, and our Patient Ambassadors, partner with other patient organizations on many of our activities. DPC also provides our advocacy tools, issue information and education information to the entire community as a resource.
In addition, as a small organization, we must work with others within the community both to amplify our voice and to obtain needed information and resources which we do not have. For example, we cannot afford state lobbyists. As a result, we must work with our community partners to obtain critical legislative updates that help us strategize how to engage our empowered membership in advocacy activities.
What are the three most important actions needed to grow your initiative or organization?
1. Continued funding is critical for the growth of DPC and our Patient Ambassador program. With 22,00 members, large resources are needed to provide them with tools needed to become empowered and engaged. In addition, resources are needed to organize advocacy events for patients, including travel and lodging. The amount of resources available are directly related to the volume of activities we can engage in.
2. The ability to reach out to dialysis patients. While there are 31 million Americans with CKD, DPC must identify channels to reach these individuals. Many can be reached through their dialysis facility; however for the vast majority who are pre-dialysis the challenge is how to identify and reach out to them and get them engaged.
3. The ability to provide education and advocacy tools to our members. Many dialysis patients do not have computer or internet access. As a result, DPC must often rely on the most costly print medium to provide education and information to our Patient Ambassadors and our membership. It is difficult to find a way to effectively provide information to our membership in a timely and cost efficient way.
The Story
What was the defining moment that led you to this innovation?
In 2004, a group of dedicated patients and caregivers created DPC to ensure that the patients’ voice was being heard by those making decisions about patient care. Prior to 2004, few dialysis patients had the tools to contact or travel to meet with their elected officials. Many decisions were being made in Washington, DC and the states that impacted patients, but most decision makers were not hearing from patients. With the creation of DPC and our innovative advocacy structure and tools, dialysis patients throughout the country have been able to speak up and have their voices heard by their elected officials on issues affecting their care.
DPC also saw another need within the community. Because many dialysis patients are either on disability or are lower income, they do not have the disposal income to spend $25, $50, or $100 to join a patient organization. Our founders felt that individuals should be able to receive needed education and have their voices heard regardless of their financial ability to join a patient organization. As a result, DPC created a free membership—open to any dialysis or pre-dialysis patients and their family members. To this date, DPC is still able to provide free membership to dialysis and pre-dialysis patients and their family members.
Tell us about the social innovator behind this idea.
We recognized that in forming DPC and in making it effective, the organization had to be different. It had to be the true voice of patients themselves in order to make an impact. We knew that it can be hard to reach CKD patients and those at risk in medical centers or through authority figures. It would be more effective to have peer-to-peer communication. In order to recruit members, and to represent patients with success, we had to have real patients speaking for us and forming our organizational policies. From the beginning, we have served as a grassroots utility, providing our members with the information and first of its kind tools to speak to patients, for patients. Now, we continue to ride the tide of patient involvement through new channels, including online, through Facebook and Twitter, etc. Our members keep DPC’s strength going.
How did you first hear about Changemakers?
Email from Changemakers
If through another, please provide the name of the organization or company
50 words or fewer
 | ReginaHolliday said: We are both local we should talk. Do you ever present at Health 2.0 Stat? http://www.meetup.com/DC-MD-VA-Health-2-0/calendar/12011340/ ... about this Competition Entry. - 519 days ago read more > |
| dpc updated this Competition Entry. - 532 days ago |
| dpc submitted this idea. - 532 days ago |
