As national healthcare reform stresses the importance of adhering to the standard of care and demonstrating tangible results from health interventions, physicians working in underserved communities with high rates of diabetes must seek out innovative ways to educate and engage patients.
In order to realize improvements in care delivery, providers must embrace ideas like the constant care organization or medical home by reaching out to community organizations. And the effort must focus on more than in-office talks, handouts, and Web-based FAQs; when it comes to chronic conditions, outreach programs are integral to the framework of care.
Because of the widespread prevalence of diabetes and the toxic effects it heaps upon the body, outreach programs in this fi eld are pioneering efforts to provide global care that heightens awareness through screening, educates on prevention, leads by providing access, achieves buy-in by fostering interaction and tailoring intervention to community needs, reinforces through continual follow-up, and hones methods by tracking patients and analyzing data.
Analysis of data produced by the Framingham Heart Study has clearly demonstrated the ability of a community to affect, both positively and negatively, the health of an individual.
This, according to recent conversations with the leaders of diabetes health outreach programs, should be the fundamental rule governing health professionals’ approaches to chronic conditions that require constant monitoring.
It all starts with the patient. However, all of the education and cajoling in the world will go to waste if the patient just doesn’t care; getting patient buyin is key.
Bill Releford, DPM, has experienced the dearth of knowledge about diabetes in the black community first-hand, dedicating the last 20 years to the prevention and reduction of diabetic-related amputations in high-risk populations through his Diabetic Foot Institute. And yet, despite successes there with cutting-edge treatments, Releford knew it was not enough. He was saving limbs, yes, but isn’t the goal to prevent patients from needing their limbs to be saved? Enter the Black Barbershop HealthOutreach Program (BBHOP).
“The reason that he went to the barbershop was because that’s where black men hang out; where we discuss all kinds of issues: women, sports, everything,” says Stanley Frencher, MD, MPH, Robert Wood Johnson Clinical Scholar at UCLA. “It seemed like an ideal location to take advantage of the fact that 1) we spend a lot of time there; 2) have a lot of fi delity in terms of going back; and 3) it was a place where there was a lot of trust already.”
Not resting on laurels
Once you’ve gained the trust of individuals and community organizations, you can turn your attention to other pressing issues. Though BBHOP began as a means to increase awareness of the risk factors for lower extremity amputations and kidney disease, the great reception and enthusiasm of the barbers and patrons led program leaders to cast a wider net, adding hypertension and prostate cancer to their focus.
And though the program’s goal is to “focus globally on men’s health,” BBHOP has decided to explore women’s health outreach as part of a pilot program, in partnership with Rep. Alcee Hastings (D-FL), that would bring the group’s message to beauty salons. But just because you have a group’s trust, it doesn’t mean that it should be taken for granted.
The Diabetes Hands Foundation (DHF) wanted to expand in a new direction that further facilitated connections between people with diabetes. If its offerings became stale, it could lose the respect of the 25,000 members of its English (Tu Diabetes) and Spanish (Es Tu Diabetes) language diabetes outreach sites (www.tudiabetes.org; www.estudiabetes.org).
But action without careful planning could also alienate people, so the DHF turned to what was fast becoming everyone’s new friend. “The concept started last year in part because we were getting so many invitations on Facebook,” where apps like Farmville and Mafi a Wars “are becoming a very important part of the social media experience,” says Manny Hernandez, DHF president.
Taking a page from that book, DHF created HealthSeeker, a Facebook app that challenges diabetics to adopt and maintain healthy habits through games like Snack Attack and the Whole Grain Mission.
The Role of the Website
A website should exist to reinforce outreach efforts.
Take LillyDiabetes.com’s Meal Planning page for example. The information
presented there is educational for the newbie, and can serve as a refresher for someone that has been
around the block, but wants advice before they decide to make dinner.
Why is monitoring carbohydrates important for my diet? What kinds of foods contain them? How do
I count them? How much is too much? The answers to these questions are no more than two readily visible clicks away from a visitor upon entering the site.
While the site covers many things a diabetic might need to know, it is comprehensive without being overly dense, and doesn’t masquerade as a place where you can fi nd every bit of information you’re looking for…which is what a resource should be. A place a patient can turn to when the experts are not around.
But it’s important not to understate the need for human contact. No, the experts can’t always be around, but sometimes a PDF or educational video won’t cut it. Forums and message boards should be an important aspect of outreach programs as well.
Juvenation.org, a community for type 1 diabetics created by the Juvenile Diabetes Research Foundation, successfully puts patients in touch with one another. Not only does it have a forum in which members can discuss various topics like pregnancy and dangerous hypoglycemic events, members can also join groups to commiserate and share support with other members.
Understandably, not everyone has the resources to host and manage community discussion pages, but partnering with sites that do will help your patients reach out to others when an FAQ page can’t comfort them.
Max Szadek, founder of Divabetic, wanted to do the same thing, but for a more unfortunate reason. Szadek was the long-time assistant of R&B singer/songwriter Luther Vandross, who suffered a stroke due to complications arising from type 2 diabetes.
“When the news of my boss having this stroke was in the national media, no one was making the connection to his diabetes,” Szadek recalls. “And I thought there was a huge missed opportunity, because other people could prevent strokes if they knew about them.”
Szadek had an epiphany at a Vandross tribute concert when Patti LaBelle took the stage. “She stopped in the middle of her set and announced that she was living with diabetes, but diabetes didn’t control her,” he remembers. “Up to that point, no one had spoken about diabetes, so when I looked up at that stage, I thought, ‘You’re not a diabetic, you’re a diva.’ And that’s when the word Divabetic popped into my head.”
This, in combination with his attendance at a more traditional diabetes education program (“I was just bored with it”), spurred Szadek to come up with a show and (literally) take it on the road, again with inspiration from Vandross. “Luther had several make- up artists and manicurists for the back-up singers, because he said if they felt good about themselves, they’d give him their best performance. That’s why I incorporate spa and salon services into my show.”
Szadek says that after experiencing a makeover, the attendees seem to have more confidence, which becomes “an ideal moment to talk about something they don’t want to talk about, like their diabetes self-care.”
Education and prevention
Getting patient buy-in is key, and yet even if patients are worried about a bad test result, they may have convinced themselves that everything is fine by the time they get home from the doctor’s office. Some even go so far as to fill a prescription but never take the medication.
While this alone is troubling, it is all the more so for those health outreach programs that rely on grant money to keep their doors open. How are you supposed to receive a grant renewal if you can’t demonstrate that your program is really working? The importance of follow-up is almost as great as making the initial encounter with a patient.
“The one thing we see, regardless of the disease process, is that you can come up with novel approaches about how to teach folks information, but fundamentally, it’s getting men to actually participate in their health, and getting them to understand that it’s important,” Frencher explains.
Because their program is a game hosted on Facebook, DHF paused at the thought of its members sitting at their computer all day, playing HealthSeeker. While it wanted to boost social interaction and support through social media, DHF didn’t want to create a situation in which its social media life began detracting from its members’ actual social life within the diabetes community, or their health.
“One fundamental concept is that we don’t go in a direction that is prevailing in social games, which is to hook you to the computer for longer and have you spend more time in front of the computer,” says Hernandez. “We want you to take the best of what something has to offer—the social element, the reinforcement, the networking elements—so you can go into things in your real life in terms of what you’re eating, physical activity and whatnot, and then come back and share that.”
Divabetic, on the other hand, tries to create an experience that participants enjoy so much that they desire to come back on their own for future events. “I’ve gone to 15 cities and really connected with the women in those cities,” says Szadek.
“I am inundated with requests to go back or to come to places I’ve never been.” However, limited resources prevent this from happening, so Szadek understands the importance of recreating online the feelings of empowerment and community that his live programs engender.
“Normally, I get very personal e-mails from women who feel slightly isolated trying to share care concerns with me, and we just don’t have the ability to go into that type of community. Social media has been an incredible help to me in being able to reach back to them and give them what they want.”
The Association of American Indian Physicians (AAIP) is a national organization with the goal of increasing awareness of the pervasiveness of diabetes within American Indian communities throughout the nation, taking a more broad view of the situation than most organizations, and thus, providing a unique view.
For instance, Noelle Kleszynski, AAIP Diabetes Program Director, says that the global reach of social media hasn’t actually demonstrated near the value of face-to-face visits when it comes to building partnerships.
“Face-to-face visits have been a really effective method of building partnerships, and gaining trust in the community to where the information that we’re providing is really relatable and receivable. It’s not just another website, it’s not just another thing. It has a human message with it, which is really important when we’re working with our communities.”
This is especially important considering the individual nature of American Indian tribes who seek to be seen as distinct from other tribes within the larger community. Blanket e-mails and mass marketing may not appeal to American Indians in the way that they might other ethnic groups.
Partnerships that work
For Kleszynski and AAIP, their partners are typically (and logically) within the American Indian community, but for others, it makes sense to leverage non-traditional partnerships to achieve and exceed goals.
Take, for example, BBHOP’s work with Salesforce.com. At first glance, it doesn’t seem that one party could offer much to the other, but when looking at Salesforce.com’s 1/1/1 philosophy, one can see that both have much to gain. By donating 1 percent of its resources (time, product, and equity) to non-profits like BBHOP, Salesforce.com fulfills its philanthropic mission of “disseminating the financial, technological, and intellectual wealth of the organization to those in our communities who need it most;” and BBHOP gets enterprise-level customer relationship management services that allow the organization to “keep records of all the men that we interact with in the barbershop, and contact them on a regular basis. Leveraging that sort of tool has really helped us considerably in terms of having a small staff and still being able to manage hundreds of people,” says Frencher.
Research and expansion
Streamlining patient tracking also allows BBHOP to examine how well its efforts are working in the field, something that can be integral to a program’s survival. By demonstrating that a program works beyond anecdotal evidence, an outreach program can provide a solid framework through which other organizations can adapt and mold the methods to their specific needs.
“BBHOP began as an outreach program that now incorporates a lot of research,” says Frencher, “so we actually evaluate the intervention itself and try to evaluate other modalities for providing education to men, like using DVDs developed by researchers at the foundation for informed decision making, helping people to understand the risks and benefits of what are called preference-sensitive decisions.”
Manny Hernandez says that the response to Health Seeker has been overwhelmingly positive, and that even though it debuted a few weeks ago, it has already received great feedback that will be used to modify the game experience, and thus, improve players’ health.
This is an important aspect for AAIP, because although it is a national organization, it relies on individual tribes to improve their own community health goals. AAIP provides educational materials and funding and training opportunities, but needs to know whether outreach efforts are paying off.
All AAIP programs have an evaluation component, Kleszynski says, in which they use pre- and posttests “when possible and appropriate to measure knowledge increase.” And though “there is no one way to measure outcomes in each community…there is increased awareness on the seriousness of diabetes and that it can be prevented.”
Divabetic’s Svadek, on the other hand, questions whether metrics are truly able to determine a program’s effectiveness. “If someone comes to a program and three months later they’ve lowered their A1c and lost 15 pounds, but then six months later they’ve gained it back or their A1c has climbed, is the program a success or failure?”
Svadek feels that it is more important to emphasize compliance in a “safe” environment in which “one month you could share a success and one month come and share a struggle without being judged.”
If you tried to lift these programs wholesale and drop them into a community, they would probably fail. Each has cultivated appeal within a niche market over a period of years and knows how to appeal to specific needs in an efficient and appropriate manner. However, if you were to take a bit here, a piece there, and meld them with the knowledge of the local community and the needs of its patient population, success wouldn’t be far away.