New Patient Outcome App: We’re Upping Our Own Game

stem-cell-outcomes

We’ve always published our outcomes. What’s bizarre is that few other clinics have followed suit. Maybe it’s because we’ve been doing this work longer than any other clinic. Now we’re upping our game again with a level of transparency that doesn’t exist for any other stem cell clinic—real-time outcomes that patients can access online.

Outcomes and Why They’re Critical

Let’s face it: despite our 11 years of experience injecting stem cells into the various areas of the musculoskeletal system, many physicians out there still think stem cells are some sort of voodoo. While we have seen less and less of this year after year, we still need to collect and publish results (aka outcomes) to convince mainstream physicians that this procedure is for real. As a result, Regenexx has published a plurality of the world’s orthopedic stem cell research.

While we’ve taken this commitment seriously, few other clinics and doctors do. Many will talk a big game, but when it comes down to it, they don’t take the time, energy, and resources necessary to collect outcomes. This list includes many academic physicians who should be doing this but can’t seem to get their act together to get it done.

Real vs. Faked or Made-Up Outcomes

One of the things we’ve seen out there in the stem cell wild west is “made-up” outcomes, which is disturbing. My experience with this phenomenon began with an orthopedic surgeon in Florida who started using stem cell injections about four years after we began. At that point, we had put up our first set of stem cell outcomes for knee arthritis, and one day I found those copied and pasted on his website. Huh? He used a completely different procedure than we did so our outcomes didn’t apply, so I told him to take them down. He did this but then promptly inserted completely fabricated outcomes. When I confronted him about these results, he admitted these were his estimates of how he thought his patients fared rather than any compilation or analysis of pre- and post-procedure data collection. Yikes!

I’ve also written other blog posts about how other physicians have estimated their outcomes. For example, one recent research paper on fat stem cells used to treat knee arthritis used an “outcome” that was two-thirds determined by what the treating doctor thought! So even if the patient didn’t report that he or she did well, the doctor could make that poor outcome look great by voting that the patient’s assessment was wrong! Nuts! No other medical specialty outside of orthopedics would tolerate such nonsense.

Regenexx Outcomes

We’ve spent years collecting outcome data and are now actively tracking more than 9,000 Regenexx patients in a registry. It takes a team of people thousands of man-hours a year to contact all of these people and send and collect outcome forms. It’s a thankless and gargantuan task.

We’ve always published these results and have updated these infographics every year. However, recently we developed an outcome app that is now used by our network providers to analyze a real-time extract of the registry. For example, our providers can pull up all of their knee patients to see what they’re reporting.

Recently, I realized that we needed to have all of this information available to patients. Why? It shows a level of transparency that doesn’t exist in medicine. Also, it demonstrates the difference between being seen in a Regenexx clinic and the rest of the clinics that offer stem cell treatment. Heck, the other clinics have no data, let alone data that you can search online and slice and dice how you want it when you want it. Here is a link to get to that new data analysis tool. We’re still working on the mobile version of this app, which should be available soon, so it’s now only optimized for computers and tablets.

The upshot? Nobody else takes outcomes as seriously as Regenexx. Nobody is even a distant second. Now we’re doing what real leaders do—when there is no competition, you up your own game!

 

Read 8 Comments
  1. Wow! This is why I love your clinic! A real breath of fresh air in an often chaotic world! Thank you for fighting to keep integrity in your work…not only does it benefit us as patients but it protects our communities from less than admirable providers.

  2. Sharing outcome data is a very good thing – I applaud you for doing so. As a prospective client, I would like to know if you have or share radiographic or imaging data along with patient outcomes? I would be very interested in seeing, for example, photographic images of before and after tears, joints damage, and other treatments that you perform.

    1. Kim,
      There is alot of focus on MRI findings because they are often labled as the source of a patient’s pain. However, the reality is in Arthritis, pain is not related to structure, it’s about nerves. Studies show that there are as many people with no pain with the same findings on MRI, as there are people in pain. That said, there are many before and after MRI’s in Case Studies in the Blog section. Here are a few: Please see: http://www.regenexx.com/osteoarthritis-pain-not-related-to-structure-again/ and http://www.regenexx.com/can-day-stem-cell-procedure-reduce-disc-bulge-size/ and http://www.regenexx.com/stem-cells-knee-arthritis/ and http://www.regenexx.com/knee-acl-stem-cell/ and http://www.regenexx.com/how-to-heal-a-torn-tendon-naturally/ and http://www.regenexx.com/hip-avn-surgery-alternative/ and http://www.regenexx.com/acl-surgery-healing/ and http://www.regenexx.com/laser-spine-surgery-side-effects/ and http://www.regenexx.com/can-a-precise-stem-cell-injection-work-where-surgery-fears-to-tread/ and http://www.regenexx.com/side-effects-of-hip-labrum-surgery/

  3. I’m having difficulty drawing conclusions about the data collected over the different time periods post treatment. The data shows that patient participation in post treatment surveys diminishes dramatically from 0 to 48 months, regardless of the metric were studying. We don’t know who dropped out or why. The results could be greatly skewed one way or the other depending on what patients chose to continue answering the surveys for the entire 48 months and which patients chose to drop out of the study. For example, let’s say you treat 1000 patients in one part of the body. Three months after treatment 500 of the original patients treated participate in the survey. Let’s say at 48 months only 25 patients participate. How can we draw any conclusions when 475 of the patients are no longer reporting? We also don’ know what the experience of the 500 patients who chose to never report were.

    1. Russ,
      There is drop off due to patients not responding as time goes on, which is typical for all registry data. Having said that, the number of cases entering the registry has dramatically increased over time, so that also gives the appearance of declining n’s as time goes on. For example, by mid-2014 when we published our safety paper, we had around 2,300 stem cells cases we were tracking. As of this month there are almost 9,500. So there will be far more patients at 1 and 2 years than exist by 3 or 4 years.

  4. Thank you for your reply. I’m glad the number of cases entering the registry has dramatically increased over time. The practice of tracking the progress of patients after treatment is important for all of us to accurately assess the degree of value we can attribute to these medical treatments. However, it is important that the presentation of that data is done in a way that follows some basic common sense statistically. I do not understand your comment ,”gives the appearance of declining n’s as time goes on.” The app says “Live patient outcome data”. At the top of each chart that is displayed, there is a number of patients stated. Are you saying that number changes on a regular basis, as more patients report on their experience, hence the term “live”. I was under the impression the number of patients stated at the top was fixed. I believe when double blind studies are done to test for the effectiveness of a drug being researched you have a fixed number of people in the study at the beginning and no new patients are allowed in after the study begins. People drop out for various reasons which cannot be controlled. So if I understand you correctly your way of tabulating data allows for new people to report their results, and that new data is plotted on the graph alongside other data points with people who got treated at an earlier time. The pool of patients will continuously grow over time and the charts displayed in the app will always be changing. This is dramatically different than looking at a fixed number of people and tracking their progress over time. Is this common practice in statistics? I am not an expert. I am curious what a professional statistician would say about the relevance of comparing each point on the graphs from 0-48 months when the pool of patients is continuously changing.

    1. Russ,

      “This is REGISTRY data and not RCT data. Patients enter into the registry every day. The live query of the extract that you’re querying is currently updated monthly. This continuous entry of patients is typical in a registry as it tracks patients treated over time. The number of patients entering has increased YOY since the inception of the registry, hence there are more patients in the registry at 6 months, than 12 months, than 24 months, etc… This wouldn’t be a statistical issue, as it’s a property of a registry and not the statistics that are run on the data. We have engaged many professional statisticians through the years for many of our studies based on this data, there are no issues with performing stats on registry data. Every registry run has the same issue-i.e. knee replacements, hip replacements, bone marrow transplants, etc… The app merely lets you run simple stats on the existing data, which is different than pulling the data out, fixing it in time, and then running stats.” Dr. Centeno

      1. Thank you doctor. That was a great answer. I fully understand now. I didn’t really know what REGISTRY data was compared to RCT data. I consider myself to be a student here. I was persistent because I wanted to understand. I love the blogs and I read every one of them. Every time I visit the website I leave with a better understanding of these treatments. Thank you for the blogs.

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