Leaders within the North American Spine Society have partnered with organizations from around the country to launch a pilot program for a national spine registry database. "The main purpose of it is to be able to derive information relative to comparative effectiveness research for spine disease," says Dan Resnick, MD, MS, professor and vice chairman of neurological surgery at the University of Wisconsin School of Medicine and Public Health in Madison.
The pilot program for the registry, which includes 15 sites, will begin in July. Once the pilot program is complete, Dr. Resnick and his colleagues hope to expand the program nationally. Here, Dr. Resnick discusses why spine registries are so important and where he sees the NASS registry headed in the future.
1. Registry information focuses on patient characteristics. One of the biggest challenges for spine care providers is following evidence-based guidelines written as a result of studies conducted using a general pool of patients who may not have the same characteristics as their patients. For example, a young and relatively healthy patient with a disc herniation will need different treatment and experience different outcomes than an older, sicker patient.
"This is a diagnosis-based registry with front heavy outcomes measures where people can insert demographic and clinical information," says Dr. Resnick. "The idea is that anyone taking care of spine patients would be able to use the same dataset and see how people are treating patients depending on their particular characteristics."
For now, treatment is evaluated based on ICD-9 codes that provide a diagnosis for which a particular surgical procedure may or may not be indicated. However, not every patient with the same ICD-9 code is made the same. "People with more pain and from different socioeconomic backgrounds may be more likely to benefit from surgery," says Dr. Resnick. "The idea is to capture data to see the similarities and differences for different disorders and choose a treatment pathway based on the individual patient's situation."
2. Analyzing the data could help with treatment decisions. While just collecting the data won't have an impact on the patient/physician relationship, the data potentially gleaned from the registry could factor into treatment decisions. For example, there are a variety of treatment options for patients with herniated discs, and depending on their individual situations a variety of complimentary treatments are appropriate.
"The registry will demonstrate that these treatments are complementary, instead of competitive," says Dr. Resnick. The lay press frequently presents surgical and non-surgical treatments as being competitive alternatives, when in fact they are usually applied sequentially and in a complementary fashion. "If someone has acute low back pain, we will send them to physical therapy or give them ibuprofen. Most patients will get better after conservative treatments and require no further therapy. More aggressive therapy is reserved for patients who do not improve with less aggressive measures. Fusion isn't competing with the other treatments because it isn't considered until the other treatments fail."
3. Patients enter their own information. Patients enter in their own demographic and outcomes information for the study, which takes the burden of data entry away from providers and their staff members. Patients can enter the data electronically from home or in the office — but it's important that the data is patient-driven.
"We want to keep the data as patient-reported outcomes as opposed to physician reporting," says Dr. Resnick. "Patients report demographics first and then answer socioeconomic questions, work satisfaction and work status. We also ask them about disability measures for disease-specific as well as general outcomes using EQ5D to capture that information. There are also questions related to the duration of symptoms."
The pilot project hopes to capture information from 1,000 patients with spine disorders, a category which could be narrowed in the future.
4. Encouraging patient involvement. In his office, Dr. Resnick has participated in patient information-gathering efforts before, but the project was supported by a grant and patients received compensation for their participation. The program also funded clinical coordinators to call patients and retrieve data that wasn't entered electronically. The NASS registry doesn't have the same funding or support for incentives; its leaders hope the potential clinical benefits will drive patient participation, as they recognize this type of support is not universal
"There is the possibility of failure if patients don't participate, but hopefully we'll get around that," says Dr. Resnick. “By making participation easy and by explaining how participation benefits the patient we hope to capture a reasonable data sample. At this point, some staff support is going to be necessary at the level of the provider, we are trying to see how much support people need to get this done."
When the patient calls for an appointment, the office staff should ask them to fill out the information on the website before their visit. If they don't have a chance to enter the information prior to the visit, have a computer station in the clinic's lobby so they can enter the information while waiting for their visit. So far, Dr. Resnick says about 40 percent of his patients fill it out before hand and 40 percent fill it out at the clinic, with 20 percent needing assistance to enter the information.
5. Registry can be mined for research data. Providers who are interested in answering research questions can also mine the registry for data on a specific treatment series. "The whole purpose is to gather data to organize and use," says Dr. Resnick. "We want to propagate and distribute the data for quality improvement. We hope it will answer questions about complications and improve the physicians' ability to choose the correct treatment for the correct patient."
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The pilot program for the registry, which includes 15 sites, will begin in July. Once the pilot program is complete, Dr. Resnick and his colleagues hope to expand the program nationally. Here, Dr. Resnick discusses why spine registries are so important and where he sees the NASS registry headed in the future.
1. Registry information focuses on patient characteristics. One of the biggest challenges for spine care providers is following evidence-based guidelines written as a result of studies conducted using a general pool of patients who may not have the same characteristics as their patients. For example, a young and relatively healthy patient with a disc herniation will need different treatment and experience different outcomes than an older, sicker patient.
"This is a diagnosis-based registry with front heavy outcomes measures where people can insert demographic and clinical information," says Dr. Resnick. "The idea is that anyone taking care of spine patients would be able to use the same dataset and see how people are treating patients depending on their particular characteristics."
For now, treatment is evaluated based on ICD-9 codes that provide a diagnosis for which a particular surgical procedure may or may not be indicated. However, not every patient with the same ICD-9 code is made the same. "People with more pain and from different socioeconomic backgrounds may be more likely to benefit from surgery," says Dr. Resnick. "The idea is to capture data to see the similarities and differences for different disorders and choose a treatment pathway based on the individual patient's situation."
2. Analyzing the data could help with treatment decisions. While just collecting the data won't have an impact on the patient/physician relationship, the data potentially gleaned from the registry could factor into treatment decisions. For example, there are a variety of treatment options for patients with herniated discs, and depending on their individual situations a variety of complimentary treatments are appropriate.
"The registry will demonstrate that these treatments are complementary, instead of competitive," says Dr. Resnick. The lay press frequently presents surgical and non-surgical treatments as being competitive alternatives, when in fact they are usually applied sequentially and in a complementary fashion. "If someone has acute low back pain, we will send them to physical therapy or give them ibuprofen. Most patients will get better after conservative treatments and require no further therapy. More aggressive therapy is reserved for patients who do not improve with less aggressive measures. Fusion isn't competing with the other treatments because it isn't considered until the other treatments fail."
3. Patients enter their own information. Patients enter in their own demographic and outcomes information for the study, which takes the burden of data entry away from providers and their staff members. Patients can enter the data electronically from home or in the office — but it's important that the data is patient-driven.
"We want to keep the data as patient-reported outcomes as opposed to physician reporting," says Dr. Resnick. "Patients report demographics first and then answer socioeconomic questions, work satisfaction and work status. We also ask them about disability measures for disease-specific as well as general outcomes using EQ5D to capture that information. There are also questions related to the duration of symptoms."
The pilot project hopes to capture information from 1,000 patients with spine disorders, a category which could be narrowed in the future.
4. Encouraging patient involvement. In his office, Dr. Resnick has participated in patient information-gathering efforts before, but the project was supported by a grant and patients received compensation for their participation. The program also funded clinical coordinators to call patients and retrieve data that wasn't entered electronically. The NASS registry doesn't have the same funding or support for incentives; its leaders hope the potential clinical benefits will drive patient participation, as they recognize this type of support is not universal
"There is the possibility of failure if patients don't participate, but hopefully we'll get around that," says Dr. Resnick. “By making participation easy and by explaining how participation benefits the patient we hope to capture a reasonable data sample. At this point, some staff support is going to be necessary at the level of the provider, we are trying to see how much support people need to get this done."
When the patient calls for an appointment, the office staff should ask them to fill out the information on the website before their visit. If they don't have a chance to enter the information prior to the visit, have a computer station in the clinic's lobby so they can enter the information while waiting for their visit. So far, Dr. Resnick says about 40 percent of his patients fill it out before hand and 40 percent fill it out at the clinic, with 20 percent needing assistance to enter the information.
5. Registry can be mined for research data. Providers who are interested in answering research questions can also mine the registry for data on a specific treatment series. "The whole purpose is to gather data to organize and use," says Dr. Resnick. "We want to propagate and distribute the data for quality improvement. We hope it will answer questions about complications and improve the physicians' ability to choose the correct treatment for the correct patient."
More Articles on Spine Surgery:
5 Ways Minimally Invasive Spine Surgery Can Increase Profitability
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