Addressing Issues at Your State/Local Level: The Behavioral Risk Factor Surveillance System

Operation 435, an advocacy movement set in motion by the COPD Foundation, is designed to empower patients with COPD to get them involved in the fight for their cause, especially on a local level. There are 435 congressional districts in the U.S. and the Foundation aims to engage them all.

“Our primary strategy is to give a voice to all of the individuals who are affected by COPD,” says Joe LaMountain, the COPD Foundation’s Director of Patient Advocacy. “We want you to become advocates for the cause and to engage in government relations. It’s an effort to get all COPDers involved in the political process.”

LaMountain says people can become involved in Operation 435 by writing to their local Behavioral Risk Factor Surveillance System (BRFSS) coordinator and asking them to include questions about COPD in their annual state data collection tool.

BRFSS is a state-based system of health surveys that collects information on health risk behaviors, preventative health practices and health care access primarily related to chronic disease and injury. Each state conducts an annual BRFSS and for many states it is the only available source of timely accurate data on health-related behaviors.

Miriam O’Day, the COPD Foundation’s Senior Director for Public Policy, says the goal is to have questions about COPD added to each state’s BRFSS so that we can attain much needed data to design a public health infrastructure to address COPD. In other words, without the data collected from these surveys, we won’t be able to know exactly what local COPD communities need in regards to their care.

“We want a question about COPD, [such as], ‘Have you ever been told by a doctor or another health professional that you have chronic obstructive pulmonary disease (COPD), emphysema or chronic bronchitis?’ added as a component of the overall survey, so that the CDC is able to lay the data side-by-side and form community and national strategies for prevention, treatment and management of COPD,” she says.

O’Day says once the states turn in their data to the Centers for Disease Control and Prevention (CDC), they can do “all kinds of layering.”

“They can lay COPD data on top of obesity or any other health outcomes that they’re tracking,” O’Day says. “They can tell us about tobacco use and about obesity numbers in their state. This helps determine what best community outreach program [to implement] and what the best target resources are.” LaMountain says no national data exists that is sufficiently large enough to allow for state level estimates of COPD prevalence. The process of incorporating questions into the BRFSS lies with each states’ BRFSS coordinators who are usually state health department employees.

“It goes back to this basic issue we had which is that COPD places a significant burden on our country,” LaMountain says. ”And we haven’t had much of any response from a public health standpoint. So, on the state level, we’re trying to get better data on the prevalence and seriousness of COPD.” The demand for state level data is considerable and growing among public health practitioners. For example, a health care initiative called the National Lung Health Education Program (NLHEP) is aimed at involving primary care physicians in early identification and treatment of obstructive lung disease. NLHEP spreads awareness about spirometry testing, the recommended tool for diagnosing COPD in patients. The inclusion of a question in the BRFSS is essential to calculating a state’s COPD prevalence levelsbecause it provides data consistently allowing state health department officials to analyze trends throughout time.

The data is also important because it will allow these public health professionals to develop programs and policies that will prevent new COPD cases and manage current COPD patients in their states.

“We want people to communicate and we want them to the contact the BRFSS coordinators in their state and say, ‘It is essential to collect this data,’ ” LaMountain says.

O’Day says the goal of this current Operation 435 initiative is to help bring attention to the states that they need to include COPD questions in their BRFSS. “In addition to data collection it is imperative that individuals reach out to their members of Congress and emphasize the need to have a fully funded COPD program at the CDC in the chronic disease division,” she says. “The first thing these officials need to do is put together a national action plan. Then let’s move forward. Let’s shift the paradigm and move away from shame and blame to focus on prevention, treatment and management of COPD.”

LaMountain says COPD patients can become more vocal by demanding equal treatment.

“A big theme that resonates throughout the health care community is that COPD is treated differently than any other disease and that’s not right,” he says.

Operation 435 was launched this summer with themes of planning, outreach and communication at the forefront. LaMountain says that the next step is to have petition drives, to help get people involved. “When we talk about the overall kind of strategy to address what’s incumbent and what’s actionable that advocates can do, we talked about building a patient movement,” he says. “Contacting a local BRFSS coordinator is one of the things we want COPDers to do. And by doing those things, they are becoming advocates.”

According to LaMountain, the key steps towards forming a state/local movement include having COPD patients sign the Stop COPD! petition, informing their friends and families about the issue, talking about it at social functions and sending out their own email blasts. Their goal is to accrue more than 10,000 signatures for the Stop COPD! Petition by the end of this year.

“If thousands of COPDers sign their names on the petition, they’ll show their local and national leaders that people in their districts care about COPD,” he says.

LaMountain believes that, at its core, the inclusion of COPD questions in the BRFSS is all about empowerment.

“Think about what we’re up against—it’s a behavior change here,” he says. “We’re empowering the patient to take action for the greater good for the community. People are cynical about politics, they hate politics and they feel disenfranchised, but quite honestly nothing could be further from the truth. When a person commits themselves to the cause, gets involved and learns about the issues, he or she can achieve incredible things,” he says. “We’re trying to tackle these important issues head-on, and we’re trying to convince everyone affected by COPD that this is something they can do, and it will make a big difference, believe it or not.”



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