Video-Vetted Vs. Non-Video-Vetted Vs. Subjectivity
To the endometriosis community,
Over the past several months, we have had some questions regarding iCarebetter and the legitimacy of our expert lists. We have seen several posts, comments, and threads sharing various information and questions about iCarebetter and the vetting platform. We thought it might be helpful to clear the air and provide answers in case anyone has been confused. Specifically, we are here to answer these questions:
- Are all of the surgeons on iCareBetter video vetted?
- Do doctors have to pay iCarebetter to be added to the expert list on the website?
- Is the vetting process for iCarebetter regulated?
We fully understand and appreciate the concerns about the quality of an excision surgeon and the complexity of assessing a surgeon’s skill for a patient.
Before diving into the Video-Vetting and iCareBetter list, let’s review other options. There have been several recommendations, which include:
- Review the surgeon’s social media profile and their surgical videos
- Use Google to search for nearby doctors and their reviews
- Ask surgeons how many complex surgeries they have done
- Look at their publications
- Lists
While many of those with endometriosis have had to do this for many years, It is obvious that these solutions are not practical or helpful for many patients, and they lack objectivity.
For example, reading in detail about someone’s experience can be helpful. However, reading a list of Google reviews will often be one-sided or only demonstrate extreme views—those with extremely positive or negative experiences.
Having scientific publications doesn’t mean a surgeon is good. Most people have been informed that funding sources, conflicts of interest, and the quality of research are important to understand. Without having a background in healthcare or research, this can be hard for patients to understand how to do or what to look for. There are also publications that say the right things, but their intentions are not in the right place and there may be secondary gain. Many surgeons in the endo space may demonstrate a good understanding of endo, but this does not always extend in their surgical skills.
Knowing the power dynamic between patients and surgeons, it is almost impossible to get a clear answer about how many endo surgeries a surgeon has performed. Logically, it makes sense that if a doctor is only performing a few surgeries per month compared to someone doing a few surgeries per week, the physician performing more has more practice. That being said, there are other considerations that are beyond the control of the physician.
We can go on, but you get the idea. The bottom line is that everyone has their own subjective perspective, which is based on past experiences, their own research, and oftentimes others’ influence and experiences. And we all know each individual is different and what worked for me might not work for you.
In contrast to all these methodologies, iCareBetter has only applied objective processes. We have only examined evidence to see what works.
A study in the New England Journal of Medicine used actual data to show that video-based surgical skill scores were correlated with Complications. https://www.nejm.org/doi/full/10.1056/NEJMsa1300625
iCareBetter then applied this Journal Article methodology to endometriosis surgery. We created the list of Video-Vetted surgeons after vetting their surgeries. iCareBetter started by only listing surgeons who passed video vetting. This process requires surgeons to submit three videos with specific criteria, which are then peer-reviewed by other experts in this field. The entire process is double-blinded.
As iCareBetter is relatively new to the endo space, it took some time to build up our resources. Unfortunately, the number of surgeons submitting videos and the number of surgeons who passed was very low. Additionally, reviewing a surgeon’s videos is very long and usually takes three months on average. At the same time, 90% of patients who used iCareBetter could not find a surgeon based on their criteria and location. In order to serve the needs of those utilizing iCareBetter to find care, we had to make a change so patients could still find a doctor who could still provide some surgical care. Therefore, we made the decision to add a second group of surgeons who are non-video-vetted. These surgeons are added based on their peers’ recommendations and their personal interests. Patients can review them on their iCareBetter profile, and we publish the reviews without filters.
We hope that these non-video-vetted surgeons will take the steps to pass the video-vetting in the future. Meanwhile, the Video-Vetted designation is explicitly stated on the profile of the Video-Vetted surgeon, there is no fine print.
In regards to the questions about surgeons paying to be on iCareBetter, we did begin this process by charging doctors a subscription fee to be on iCareBetter. But since over a year ago, we have given the option for a 100% discount, and surgeons can choose to be on iCareBetter for zero subscription fee. To keep the lights on, we only charge doctors if we help them with promotion or management services such as training their staff to offer better care to patients and giving them marketing strategies, all of which are optional. That said, for video vetting, the only required fee for surgeons is a one-time review fee of $400 that pays for reviewers and the cost of the review.
Currently, we have 222 providers, including surgeons on iCareBetter, and we are seeing constant interest and growth. We will continue to do video-vetting and hope that more surgeons will become Video-Vetted. We continue Video-Vetting for patients’ interest and for the purpose of transparency.
We would love to hear your thoughts and concerns here.
iCareBetter Launches Endometriosis Center For Long-Term Care
iCareBetter Launches Endometriosis Center For Long-Term Care
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Based on patients’ needs and considering the lack of appropriate endometriosis care, iCareBetter launches Endometriosis Centers for long-term care. The centers’ focus will be long-term endometriosis care before and after excision surgery. We will collaborate closely with excision surgeons, physical therapists, and other providers on iCareBetter to offer long-term multidisciplinary care to endometriosis patients. We believe that excision surgery is the gold standard of treatment for endometriosis, and we also believe that patients need an ongoing care plan and monitoring after excision surgery, even if the best surgeons in the world do it.
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This is Dr. Saeid Gholami, the founder of iCareBetter. I have an important announcement to make today. But first, let me take you on a journey with me through the last three and a half years.
Phase I – it starts with surgery.
In my exposure to endometriosis patients as a medical student and then as a primary care doctor, I have always tried to find a solution to identify trusted resources for patients. A few years ago, right at the beginning of the pandemic, while the world was going upside down, I started working with a team of the best endometriosis surgeons and advocates to create a vetting system to find and introduce skilled excision surgeons. The vetting was based on a New England Journal of Medicine article and assessed surgical videos in a double-blind process.
This vetting made some people uncomfortable. However, the vetting confirmed the skills of the best surgeons in the world and introduced some new excision surgeons with a limited chance to prove themselves in a space where everyone claimed expertise without proof. This led to a transparent process that let patients make informed decisions about their excision surgeons. This innovation put us on the map and made us a significant platform in the endometriosis world.
Phase II – add multiple disciplines
After successfully launching video vetting for surgeons, we sought other opportunities to support endo patients. Our conversations with patients taught us that the community needs vetted physical therapists (PT) who understand endometriosis and its complex care requirements. Therefore, we introduced the iCareBetter Physical Therapy vetting and built a network of PTs. Our list of PTs kept growing, and after two years, many advocates and patients are using it daily and promoting the importance of physical therapy for endometriosis patients. The PT directory has been very helpful for patients, and we have over 120 physical therapists in almost all the US states. And thousands of patients have used iCareBetter to find a PT to help with their endometriosis.
Similarly, we added urologists, dietitians, and pain specialists so patients can use iCareBetter for most of their endo-related issues.
Phase III – Artificial Intelligence for endometriosis
Right after the launch of Chat-GPT and the excitement around artificial intelligence (AI), we launched an AI-powered chat tool called endometriosis.AI. This created massive excitement, and many patients started using it. As a result, we ran out of server capacity within three days after launch and had to shut it down to avoid going into debt for server costs. As I am speaking with you, thousands of patients have used it and keep using it to acquire information about endometriosis. With the launch of endometriosis.ai, we made endometriosis the first disease community to have its specialized AI discussion. This was in sharp contrast with the history of endometriosis, which is always among the last diseases to be considered in other situations, such as surgical tools, medications, and others.
Moreover, we have published hundreds of articles and interviews to create an education hub for endometriosis.
We currently have over 200 providers in our network, and 30,000 patients use our services each month.
I am incredibly proud of what we have achieved.
Phase VI – Begins iCareBetter Centers for Long-Term Care.
One question that patients commonly asked us was, “Where can I go before surgery or after surgery for long-term care?”
We searched the medical community for the right centers to help with this long-term care. Our non-negotiable criteria were simple: These centers should not dismiss patients and avoid putting endo patients on hormones as “the cure for endo.”
To my frustration and shock, no center expressed interest in seeing more endometriosis patients. We even purchased the emails of ten thousand OBGYNs in the US and invited them to join our network and support endo patients. Not even one ObGyn responded positively to the invite to see more endometriosis patients. Except for our excision surgeons, no one wanted to deal with endometriosis patients in their practice. It was a heartbreaking realization for all of us.
From a patient’s perspective, they need a care team that is in their corner and does not get tired of them after four or five visits because the pain is still there. A team that sits and thinks with the patient and tries to problem-solve with the patients as a team member. This team should map out the options, what has been tried, and what is left to be tested. A team that patients can go to four weeks, four months, or four years after surgery to complain that the pain is back.” This team, instead, thoroughly evaluates patients for other pain generators or a recurrence of endometriosis. A care team that believes in patients and helps them connect with the right specialist for their gastrointestinal, urinary, neurological, and other symptoms.
We tried several solutions to create this care team with other centers and groups, but there was a complete lack of interest and empathy, as it has always been with endometriosis. Therefore, we decided to build these centers ourselves. With that, I am proud to announce that we are launching the first iCareBetter Endometriosis Center in sunny California. It will be at 6621 Bay Laurel Place, Suite A, Avila Beach, CA 93424. We plan to open the next centers in CA and other states.
The centers’ focus will be long-term endometriosis care, so we will collaborate closely with excision surgeons, physical therapists, and other providers on iCareBetter to offer long-term multidisciplinary care to endometriosis patients. We believe that excision surgery is the gold standard of treatment for endometriosis, and we also believe that patients need an ongoing care plan and monitoring after excision surgery, even if the best surgeons in the world do it. iCareBetter centers will be the long-term care center for patients before and after excision surgery.
Our first center in Central California will be ready to see patients on February 20th, and we will offer in-person and virtual services. The next ones are being prepared, and we will announce their launch soon. If you want to ensure you secure your place before we run out of space, join the waitlist by filling out the form below. Also, if you want to be among the first ones to know about iCareBetter centers when we come to your area, please use the link below to add your name to the waitlist.
Navigating the Path to Your Endometriosis Specialist
The journey towards resolving endometriosis involves an important decision – selecting the right surgeon. Leveraging expert resources like Nancy’s Nook and iCareBetter can be instrumental in this process.
Find an endometriosis specialist
Determining Your Needs in a Surgeon
Being aware of your specific requirements can help you make an informed choice. Here are a few considerations you should keep in mind:
Training and Experience
A surgeon’s training, notably in Minimally Invasive Gynecologic Surgery (MIGS) or Fellowship in Minimally Invasive Gynecologic Surgery (FMIGS) is crucial. Such surgeons have spent more time in operation theaters, honing their skills through extensive practice.
Ensure your surgeon is board-certified and inquire about their experience, including the number of surgeries they’ve performed, complications they’ve encountered, and outcomes.
Surgical Support Team
The surgeon’s team is equally important. Ask about their procedure in case of bowel, bladder, ureter, or diaphragmatic involvement. Inquire if everything can be done during a single procedure.
Approach to Excision
Surgeons may have different opinions on excision versus ablation. Find out their thoughts on the subject and where and when they excise or ablate.
Post-Surgery Care
Ask if the surgeon routinely prescribes suppressive medications pre and post-surgery. Understand their reasons if they do.
Costs
Don’t hesitate to inquire about costs, insurance acceptance, payment policies, and any hidden charges.
Comfort Level
Ensure you feel comfortable conversing with your surgeon and that your queries are answered satisfactorily.
Find an endometriosis specialist
Factors That May Not Influence Your Decision
Certain aspects may not influence the quality of surgical care:
- Gender: The surgeon’s gender does not impact their surgical ability.
- Preferred Tools: The surgical tool used is less important than the surgeon’s skill.
- Bowel Prep: Surgeons may have different preferences for bowel prep before surgery, but it doesn’t seem to influence the outcome.
Factors That Might Influence Your Decision
Some factors might play a role in your decision-making process:
- Reputation: Be cautious while considering a surgeon’s reputation. Some may get media coverage or have excellent bedside manners, but that doesn’t necessarily make them a skilled surgeon.
- Office Management: A well-managed front office can make your experience smoother.
- Location: Depending on your comfort and ability to travel, location might influence your decision.
- Timing: The availability of the surgeon and your urgency might also play a role.
The Most Important Factor
Patients often report being most satisfied with surgeons who actively listen to them. Your surgeon should respect your knowledge and experiences without objection to being recorded or having someone with you during consultations.
Leading Endometriosis Specialists
iCareBetter has a list of endometriosis specialists and surgeons vetted for their surgical skills. Nancy’s Nook on Facebook also provides a list of providers.
Managing Your Relationship with Your Current Doctor
Dealing with a current doctor who might not be capable of handling your endometriosis can be challenging. Here are some tips:
- Think long-term, maintain a cordial relationship, and educate your doctor about your condition without alienating them.
- Be respectful and considerate of your doctor’s opinions.
- Try to keep your doctor on your side by asking for their support.
- Remain calm and collected during discussions.
- If you choose to seek surgery elsewhere and decide not to return to your current physician, send a copy of the operative and pathology reports with a note of gratitude.
- If your doctor dismisses you as a patient, consider it as a sign that it wasn’t a good fit.
- Routine care can be handled by a GP or Family Doctor, a Nurse Practitioner, or a Physician’s Assistant.
Find an endometriosis specialist
Remember, in addition to iCareBetter, which has a peer-reviewed video vetted group of endometriosis surgeons, Nancy’s Nook also provides a list of providers to help you navigate this journey.
Conclusion
Choosing an endometriosis specialist is a significant step on your health journey. Leveraging resources like Nancy’s Nook and iCareBetter can provide valuable insights to guide your decision. Always remember, your comfort and trust in your healthcare provider are paramount.
Why was iCareBetter built?
A message from Dr. Saeid Gholami, the founder and CEO at iCareBetter:
The story behind the movement
When I used to practice as a primary care doctor, I saw patients’ struggles to find doctors that could do proper endometriosis surgery. Endometriosis patients often came back to our clinic month after month without change in their pain and suffering. Many patients had multiple failed surgeries. That was because almost all gynecologists claimed expertise in endometriosis surgery. Unfortunately, patients could not differentiate truly skilled gynecologists from others for treating endometriosis. One specific patient that I still think of after a decade was a thirty-five years old lady with rectal bleeding during her periods. I recall her coming back every month until everyone believed she was seeking attention. And no one could help her. We tried hard to find endometriosis surgeons for the patients, but no doctor would be able to show enough knowledge and expertise to earn our trust. Some of them claimed endometriosis expertise, but after a couple of questions, we realized that they could not manage the complexity of this disease.
Someone needs to stand up and build a solution when there is a problem. That is how the world has improved since the beginning of humanity. And it was our turn to make something to enhance the world of endometriosis patients. We created iCareBetter to help patients find doctors who possess the knowledge and surgical skills needed for endometriosis treatment. iCareBetter makes the search for endometriosis doctors much more effortless and removes the randomness of finding an endometriosis specialist. By having a platform of peer-vetted endometriosis surgeons, patients can focus on finding a doctor that will match their criteria and personal needs. Criteria such as location, cost, team, and areas of expertise can define a patient’s path to recovery. And patients do not have to worry about the doctor’s basic understanding, empathy, and skills of endometriosis care.
Searching for an endometriosis surgeon is very hard. Most of the time, you have no idea about their surgical skills and whether they will be able to treat your case. iCareBetter evaluates gynecology surgeons for their skills in managing different types and locations of endometriosis. Their surgical expertise is peer vetted, so their ability to do safe surgery. We bring endometriosis specialists closer to patients.
What is iCareBetter’s mission?
To help endometriosis patients receive efficient care. To educate patients on endometriosis, to better understand endometriosis and patient’s needs. Patients wait years to receive a diagnosis, are sent to various specialties, and undergo multiple surgeries, and very few people take their pain seriously. iCareBetter mission is to improve endometriosis patients’ lives by providing them with what is needed the most; doctors that can handle each individual’s unique case.
Who is behind iCareBetter?
I, Dr. Saeid Gholami, am the founder of iCareBetter. I have training as an MD, MBA, and MS in Digital Technology. My training is not in OBGYN, and at the moment, I do not provide care to patients. I founded iCareBetter with my financial resources and then had some family and friends invest in the company to support us. None of the investors are related to the current doctors on the website. And none of the doctors on the website have any ownership or leadership position in the company.
Last words
Like every other life-changing initiative, ours started with a personal story and someone who wanted to make a change. My personal goal has been to improve patients’ lives at the minimum cost for them. And we are just at the beginning of the road. There are many patients with endometriosis who need help. And we have several problems to solve for the patients and the community. Nothing will stop us as long as endometriosis patients use iCareBetter to find hope and care for their debilitating pain and suffering.
What Are The Cost Drivers For Running iCareBetter?
From the beginning of iCareBetter, money has always been questioned. Some think iCareBetter should offer services for free to providers because it costs nothing. But there is a high administration cost for running iCareBetter. The charges come from educating patients and providers about endometriosis and quality of care, maintaining and improving the website, and responding to patients’ and providers’ requests and questions. I am going to share our costs with you in this article.
The costs for operating iCareBetter:
Education about endometriosis and the importance of expert provider
It takes an average of 10 years for a person with endometriosis to get a proper diagnosis. Then several years go by, trying various hormones, artificial menopause, and suboptimal surgeries. After many years and multiple failed treatments, a patient might find an expert who understands endometriosis and how to treat it. We at iCareBetter want to cut that time to less than a year and help patients connect with the expert endometriosis provider as soon as possible. Achieving this goal requires extraordinary efforts in educating the public, patients, and providers. Therefore, we are responsible for making educational content and distributing it on the internet. Content creation and distribution are crucial for raising awareness about endometriosis, the importance of skilled surgery, and fighting misinformation. And it costs money and takes significant effort to create and distribute good educational content about endometriosis.
Reviewing doctors’ applications
iCareBetter takes a significant financial loss on each application; please continue reading for more explanation. After we receive an application with three full surgical videos (mostly between 2-4 hours long), our team has to de-identify all documents and prepare the videos and questionnaire for reviewers. It takes 5-10 hours per application, costing us about $500 on average to prepare the application for review. Then we send the videos and the rest of the applications to reviewers and follow up with them multiple times to submit their reviews. After the reviewers send their reviews, they get compensated for their time. Compensating the reviewers cost us, on average, $350 per application. Therefore on each application, we spend $850 and only charge $400. Consequently, we lose $450 on reviewing each application.
Website maintenance, APIs, and optimization
iCareBetter has an online website core to its services to patients and providers. Providers use the website to apply for vetting. Patients use search engines and many other features on the website to find doctors and learn about endometriosis. Almost all of these features are paid plugins, apps, or APIs. Moreover, there is a sophisticated web developing team behind iCareBetter to deliver the results to our community. Keeping a high-quality website that serves patients and providers with high standards is costly.
Answering questions from patients and providers
Every day our team receives many questions and inquiries from patients, advocates, and providers. It is our responsibility to answer them. Here are some examples:
- Patients:
“Do you have a doctor in region X?”
“Does doctor Y accept new patients?”
“I can not get someone from Dr. Y’s office to answer me, has their phone number changed?”
“Why does the link to this article is broken?”
- Doctors:
“How can I join the platform?”
“I am changing my office location; please update my info.”
“I want to apply for more specialized surgery areas. How can I do that?”
Every question we receive from a patient or a doctor is our top priority. These questions can define the care plan or the surgery outcome for one or more patients. So we are committed to answering these questions. And answering questions needs the time and focus of a reliable person. And this is another layer of costs added.
Final words
The list of costs does not stop here, but I hope you have seen enough information to justify our desire to make money to keep iCareBetter alive. It costs to run a website that aims to be patient-centric, uplifts the community, and brings transparency to the endometriosis community for a better patient outcome.
Please let us know what you think about this matter.
