The spine care field grew immensely over the past few decades and now there are multiple treatment options for patients with back pain and deformity. The treatment patients receive often depends on which specialists they see and the specialist's education and preferences; there isn't yet one standard of care.
"Each treatment will work in the right patient, but we're still trying to figure out who the right patient is," says Neel Anand, MD, clinical professor of surgery and director of spine trauma at Cedars-Sinai Spine Center in Los Angeles. "That's where registries come in. You can put in all the data, medical history and pre-existing conditions to break down their clinical situation and imaging to identify pathology. Then we'll be able to develop treatment with patients based on what has worked for similar patients in the past."
Currently many providers, payers and other stakeholders are looking to randomized, controlled clinical trials to identify the best treatment pathways for patients with back pain, but developing these trials has been difficult in spine; patients know whether they're having a surgical procedure or not, and some surgeons believe performing a "sham" procedure is ethically questionable. In trials that begin as randomized, controlled trials but patients in the non-surgical group often switch to surgery if the surgeon and patient feel that's the best route to take.
"The registry is important because randomized, controlled trials can't always give us the data we need," says Dr. Anand. "We can take a critical look at registry data to find the best treatment for a particular problem. We can look at different techniques being used around the country and see who is doing better. Today, we don't know."
A few registries are operating now around the country. Some are provider-based while others are state-based. The American Association of Neurological Surgeons has launched a spine-focused registry, and the North American Spine Society is preparing a registry of its own. There are several challenges to building a system that supports mass data storage and is easy to use.
"The biggest problem is infrastructure and support; to collect this data is huge," says Dr. Anand. "Most surgeons are busy and don't have time to pull this data. We need some support or backing from the industry or research agencies, but their involvement could be perceived as bias. We are working through this. I'm part of a team trying to develop a minimally invasive spine deformities registry through the International Spine Study Group (ISSG)."
The study group includes 40 to 50 reputed spine surgeons from across the country inputting data on minimally invasive deformity correction. "We just compared open with hybrid minimally invasive surgery for spinal deformity and we're looking at what others are doing for that," says Dr. Anand. "We're looking at outcomes measures for different techniques, but it's a long undertaking. It could take five to 10 years until we are able to make meaningful conclusions based on the data."
Eventually, Dr. Anand and his colleagues hope a spine specialist will be able to tailor treatment to each patient based on positive outcomes from other similar patients. For example, if a 42-year-old patient with severe spinal stenosis walks into your office, you'll be able to tell what other 42-year-old patients with severe spinal stenosis went through and decide whether it will work for your patient.
"You can put down reasonably good data that a certain type of surgery is the best option for that patient," says Dr. Anand. "That will help a lot to shape our treatment plans for the best outcomes."
Other specialties, such as cardiothoracic surgery, have applied registries for treatment pathways successfully. However, the translation to spine surgery isn't going to be easy; there aren't as many variations in cardiothoracic surgery as there are in back pain patients, but the registries can bring surgeons closer to a more unified treatment plan.
"I think the value of quality data is going to be much better in the future and we can really make some strong recommendations for our patients," says Dr. Anand. "The payers, government and patients will be able to benefit from this."