As a chronic pain patient with multiple autoimmune diseases for over 20 years now, I am constantly looking for new treatments, options, resources, clinical trials and providers who understand best what I am facing. I recently discovered a new resource that I want to share with my family, friends, providers, and other patient influencers. I have been attending and presenting at pain conferences since 2007 and know the top doctors treating Reflex Sympathetic Dystrophy (RSD), the options coming down the pipeline, the research and clinical trials and strengths and weaknesses of these providers. So, when I registered and began to dive into XpertDox I looked up RSD first to compare their information to what I know as an extremely informed patient.
I personally went through 43 providers to get one who could diagnose me properly. I underwent many surgeries and procedures that were not necessary because I didn’t know where to start or how to get the care I needed. Had there been a resource like XpertDox when I was going through my three years of searching I would have received more appropriate care and been seen by top doctors able to help me not progress into disability status.
I believe that this is a great resource for patients who don’t know where to start with their disease to find effective and timely assistance and the best care providers. After using their site, I have confidence that XpertDox is very helpful with rare and serious conditions when it comes to finding a provider for disease specific support information for patients and their families. They do this through providing peer to peer support and expert tips and advice. The reviews on their site come from looking at the providers clinical experience, research experience, educational contributions, leadership role among the providers peers and recognition as an expert by other providers. This is the only ‘find a provider’ website/apps that is built by doctors to help patients find expert care that I have ever heard of.
As a patient with rare diseases it can be quite hard to find providers that can work as a team to assist in my care. With the list built by XpertDox that covers more than 6000 diseases, 200 treatment options, and over 1000 medicines, each patient can know that they are bound to find a provider who is an expert and can help them use a multimodality approach that is best suited for their individual needs as a patient. I have not found another website or app that performs a personalized match based on your disease, procedure or medicine needs. On XpertDox you can find information fast and simple. They suggest types of providers to see for your disease, best hospitals for treating your condition, location, specialty of the provider and more. To have this information without bias of patient opinion, influence of industry, hospitals or physician groups makes this resource balanced, independent, extensive and personalized.
One of the challenges I have had over and over, is finding a hospital that knows how to take care of my chronic conditions when I have an acute situation that needs to be attended to. XpertDox’s has also ranked hospitals with star ratings. Using information from CMS (Medicare) database for scores and creating a percentile rank for each based on those scores. They pooled information on 4500 hospitals and nearly 1 million providers. This I find very useful because knowing that I can check into a hospital that has a specialist in my disease will help ensure I get the best care possible while being confident that I have an ally on my side at that facility.
The only drawback to this site I found left me a little surprised. One of the providers listed in the top three was my former RSD provider who is now retired and hasn’t been in practice for a few years now. I was surprised that out of all the names on the list that Dr. Phillip Getson was not on the list. He was research partners with Dr. Robert Schwartzman who is now retired. Dr. Getson is the top expert in the RSD community in my opinion based on his presentations, research, and continued day to day care of patients seeing over 1000 patients with RSD. He has taken over for many of Dr. Schwartzman’s patients as well as continuing with their research and teaching other providers about treating RSD worldwide at conferences. Dr. Getson he doesn’t take Medicare and most of the providers that I am familiar with from conferences that are listed take Medicare or Medicaid. It is also important to remember that each provider offers different forms of treatment, so you not only need to look for the treatment options you want to try as a patient but who is top of the list for that treatment and what their beliefs are. For instance, another provider in the list is a known presenter on RSD at medical education events but as a highly educated patient that has listened and debated him multiple times, I don’t fully believe in his advice and the treatments offered at his practice did not help me. The average patient using XpertDox would have this benefit or know better, and some are comfortable with his treatments and believe in his expertise. So I cannot stress enough each patient needs to do their own research and create a plan with the providers you believe in and options you are comfortable trying with your provider team for the best outcomes.
The XpertDox platform is impacting the fight against neurodegenerative disease, autoimmune diseases and many rare diseases. Users of this unique community resource can accelerate treatment, reduce the gaps in care, improve patient-provider experiences, and improve referral patterns making them more reliable. We are all looking for a service for end-to-end consumer focused healthcare that is making access to care proper and timely. I encourage all my readers and followers to go check this resource out for yourselves and let me know what you think.
Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy, hypothyroid, TMJD and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. The information in this article should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone.
