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.
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.
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 $400 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 $750 and only charge $400. Consequently, we lose $350 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:
“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?”
“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.
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.
March is endometriosis month, which, needless to say, is a special time of year for us. I’ve found myself thinking a lot over the last few weeks about where I want iCareBetter to be. I have put my own reputation and medical and business knowledge behind this project. (Of course, there are many other people to thank who have supported iCareBetter along the way.) Therefore, I would be ignorant not to assess our progress and shortcomings every day. While I am proud of our achievements, I see our shortcomings and will try to do better in the future.
Starting with achievements, we have overcome some very difficult tasks to uplift the endometriosis community. Our team has identified some of the best endometriosis experts in the world using a peer-reviewed video vetting method. iCareBetter has been able to increase and protect the integrity and transparency of the surgical vetting process and our community’s trust in it. We all know that, historically, it has been incredibly difficult to build trust in our community after so many failed attempts and empty promises. But, because of the selfless work of our leading experts, patient communities, and our team, an increasing number of experts are humbling themselves by going through the vetting process. This has attracted a large number of patients and communities to use iCareBetter in order to find a vetted endometriosis expert to put their lives in their hands, and that’s the ultimate reward and incentive for our work.
At the same time, there are certain areas where we have underperformed and have probably disappointed our partners and supporters. These include not having an expert in some highly demanding areas, and not running research to show the real impact of the true experts’ excision on endometriosis patients’ outcomes. I am not interested in making excuses, but I can say that, if we had enough resources, we would have tackled all these problems by now. With that being said, these will be our main areas of focus for the next coming months.
I personally believe we have done an unbelievable job in the past nine months since iCareBetter vetting was launched. There have been victories and challenges, of course; moments when I thought it was all over. That we had failed our patients and experts once again. But, because of you and your support, we’ve kept going. Now, we have a trusted and transparent vetting platform for surgeons and patients, something that was wanted and needed for a long time. I am very optimistic about the future. There are and will be new challenges and shortcomings down the road, but we are never going to let those stop us from improving every day.
We founded iCareBetter with personal resources to be a platform for patients to find trust and help. None of the physicians on it or advocacy partners have any financial interest in iCareBetter. We take advice from the experts but the company is run by its founders and employees.