by Jana Acciacca
In Denver, among the Rocky Mountains and the mile-high view, you’ll find the nuts and bolts of the Vascular Disease Foundation’s Venous Disease Coalition – the staff who works day to day to develop innovative and impactful ways of educating both professionals and patients about the perils of venous disease.
As it is with most nonprofit organizations, the challenges are numerous. Getting the word out to physicians, hospital administrators and ultimately patients, is a difficult prospect, but the Denver team has made tremendous advances in their efforts to build a network of members and innovative programs to educate the masses on prevention and early detection.
Claiming well over 100,000 deaths annually, venous thromboembolism (VTE) is a force to be reckoned with. “It’s sad when most of those deaths can be prevented,” says Chief Operating Officer Sheryl Benjamin. “I think we have a long way to go, but there are other elements that will help – updated guidelines for VTE management and the increased focus on preventing deep vein thrombosis (DVT) after hip and knee replacement surgery.
It’s a combination – the doctors have to be savvy and know to look for it, but the patients have to know their risk and also know when they need care. We hope we can cure and prevent venous thromboembolism in the future, but it is such a serious threat.”
The VDC's "This is Serious" Initiative
The Centers for Disease Control granted the VDC $1 million to use towards raising awareness of DVT to women and their families. Rolled out over five years, the program called This is Serious is targeted toward women. According to Benjamin, “the campaign has targeted specific risk factors including general awareness, pregnancy/post-partum, surgery/trauma and cancer.
It is a series of awareness materials that are targeted by year, over the five-year period. The program makes it clear that venous thromboembolism can be fatal, and urges people to find out what to do should they develop symptoms or find themselves in the hospital.”
Year One of the program was dedicated to generating a theme and a design for the campaign, focused on women and venous thromboembolism, and targeting those women when they access hospital care. “The first year set the stage for the roll out of the theme This is Serious. Each year’s focus will be tested with an audience. We’ve partnered with the Spirit of Women hospital network to test.
We tweak it and then release it to hospital programs and any large group who can use it. It is designed so that you can educate many women at a time with slide sets and printed materials. A hospital can do a program or an educational session with the materials and tools in in the program and collect the feedback from participants.”
Currently in Year Two, This is Serious targets the obstetric application – women who have a greater risk for a blood clot when they are pregnant or the six weeks following the delivery of the baby. Year Three will focus on trauma and surgery risks, Year Four on cancer and Year Five will expand the entire program to many more sites.
All the materials are available online and are free. They can be downloaded after completing registration on the VDC site. “We partner with the CDC , so we want to know how the program tools are used and when they are used, so we do ask that we get feedback,” notes Benjamin.
By utilizing the Spirit of Women network, the VDC works with hospitals to market programs that target women in different situations. One of their key programs is “Spirit Girls Night Out”, where their hospitals conduct a fun and educational event where they give the attendees food or dessert, present the information and then it is taken home to the attendees’ families. “We target women, not only because they are at risk, but because they are so involved in decisions for their entire families,” explains Benjamin.
The This is Serious program was pilot tested last year with “Spirit Girls Night Out” and the initial feedback came from 26 centers that used the information and the slide set, received feedback as to how this applied to their audiences and whether they thought the information was useful and appropriate. The program has been both popular and successful.
But what happens after the initial five years are over? “One of the beauties of an online program,” shares Benjamin, “is that any additions to it, or any tweaks, can be done pretty economically to keep it current. An email can be sent out that includes a new section, a flyer or a new fact sheet that they might want to print or post, like posters, elevator flyers and so forth.
Each year will have a slightly different twist to the information; each year will have a different flavor.After the 5 years, the program will still be available on our website and those interested can actively access it and use it.” To learn more about the This is Serious campaign here.
A Costly Endeavor
As the VDC has only been in existence for three and half years, they are still a young organization with a lot of room to grow. The group continues to develop new and innovative resources for the professional community to utilize, like the VTE Toolkit and webinars on venous and arterial disease most resources are provided free or at low cost. But with limited funds, it’s a tough nut to crack for the VDC to reach the end-user directly. “The thing where I think most medical-minded organizations have a challenge is to try to measure their impact,” shared Christa Saracco, Director of Communications.
“We’ve talked about doing surveys, but these take money and resources. We need the resources to be able to do these surveys to track the impact – that is where the efforts would be most useful to everybody,” Saracco goes on to say. “With DVT in particular, even the Surgeon General only offers an estimate as to how many people are affected.
We would love to be able to come up with those numbers. We have access to some fantastic volunteers, but we cannot utilize them without the funding to help with some of those efforts.”
These funds won’t come from the CDC grant. Over the next few years, as they get the resources to do additional program development, raising awareness to the public is one of the goals for even further outreach with This is Serious. “We are currently looking for sponsors to help with that,” adds Benjamin. “Contributions can be earmarked through the Vascular Disease Foundation (VDF), the 501(c)3 non-profit that is the parent organization of the VDC, if sponsors come along and say that this is what they want their donations to go toward.”
“We will also continue to partner with the organizations, because one entity cannot really reach everyone due to the expense,” Benjamin goes on to say. “By partnering, everyone can participate to the extent of their constituency. Together, we can throw a lot of pebbles into the glass of water – hopefully raising the level completely – and making us able to hit many corners of the country that we would not be able to otherwise.”