Researching Chronic Illness just became A LOT Easier

Chronic Illness Research just became A LOT easier for patients!

My mother, Mary Kurek, recently launched an interactive networking magazine, The Introducer Magazine, which spotlights innovators from around the globe. One of these 10-To-Know Game Changers in the October issue was Mei Chen, who is making waves with Health Information Technology. Knowing me and my patient advocacy work, my mother saw the puzzle pieces fitting together and set up an introduction between Mei and myself. You can read more about our meeting on my mom’s blog post titled, Connection from the Introducer Hits Home. You can also check out Mei’s spotlight in the magazine if you want to learn more about her. But I’d like to dive into what she is doing to change the world!

Just so you know, Mei is one of those people constantly ‘fighting the good fight’ by stirring up change for the better! Her passion and genuine interest are driven by personal experience. She understands what it means to need the correct information on a chronic or life threatening illness. So I can see how Mei is going to change the world with Seenso— a search engine specifically designed for all things medical.

About page snippet, Seenso Health search engine

Seenso is like an online library for health information that uses only high quality sources. You can find disease causes, symptoms, treatment options, risks, self-care tips, alternative medicine, support communities, advances in research, clinical trials, etc. What’s more is that this search engine is geared towards patients, especially chronic illness patients who need to be constantly managing their disease. This truly is a step in the right direction for a more patient-centered healthcare system, which is something I feel very passionately about. And that’s why I felt the need to share this with you guys today!

What has me so excited, is that Mei has re-invented how the search engine thinks. Seenso doesn’t just search for words that you type into a box. It doesn’t just show you the most popular results on the internet, nor does it show you advertisements. What it does is reference a knowledge map! So it only pulls up resources that are trusted and supplies you with the most accurate information based off what is stored in the knowledge map for that particular disease, symptom, etc. It’s basically informed searching. Just Wow!

Pause for a second and think—How many hours have you spent searching the internet trying to find the best treatment option? You likely ended up bouncing from website to website and reading through tons of reviews and forums. And you aren’t even sure if you can trust the information that is in front of you, right? Not any more!!! You’ve got access to all the high quality medical info you need with one click or search! Oh my gosh you guys, this is just unbelievable! If you only knew how many hours I have put into researching Crohn’s disease!!! It is mind-boggling! Especially when I was first diagnosed, I was constantly looking up info on my disease in my free time. So many questions came up and I was trying to understand what was happening to my body.

What made it so hard for me and so time-consuming, was discerning the good information from the bad information. I had to sift through all of that myself. Crohn’s disease is extremely complicated because it is so specific to each individual. It isn’t a one size fits all for treatment, diet, coping strategies and for a lot of things. So you really gotta go through and consider all the info out there and decide what might work best for you, and of course discuss it with your doctors. It’s a process and sadly, there is a lot of bad information out there. What a lot of patients don’t understand is that there’s a lot of misinformation out there. That’s why I’m beyond excited that Seenso just cuts out all the “junk results”.

Mei and I talked about how truly important it is to get the right information when you need it. Trusting the wrong information can be detrimental in more ways than one. Say you are diagnosed with cancer and you only have a certain window where the disease is treatable… you need to act fast. Mei recalled the technology leader, Steve Jobs, who unfortunately died of a rare pancreatic cancer. Initially he chose to use only alternative methods of treatment, instead of scientifically proven treatments that may have actually saved his life. By the time he agreed to surgery, his cancer had already spread, making matters more dire. It’s sobering because this is a total reality in this technology day and age. Misinformation lurks around every corner of the web. Especially since current search engines aren’t optimized to display correct information. So, it’s clear the need for reliable medical information online is imperative.

Seenso is going to change the tides of health education in a big way!

Guys this is about us… the patient. I don’t know of ANY search engine out there that caters specifically to our needs. Seenso is for made for us. A search engine looking out for the best interest of the patient! I mean, seriously, how exciting is that!! It’s brilliant and I don’t know why no one has ever thought of this before!

To know that someone has taken all the guess-work out of researching your chronic illness is just a weight lifted! Whether you are religious or not, you may find yourself saying “Hallelujah” after checking this baby out! Ha ha ha! It is going to save so many patients so much time! My heart is so happy to know that newly diagnosed patients will have this resource available to them from the get-go!

Let’s compare–Here is an example, of both a Google search and a Seenso search on the same topic.

Google Screen Shot 2017-11-06
Screenshot of me searching Google for ‘Crohn’s disease treatment’.

When you type in “Crohn’s disease treatment” on google, you get a lot of mixed results. Actually you will notice the first 4 things that popped up for me were ADs. No Surprise there! If you look at the blue box to the right, you will notice a simple breakdown of Crohn’s disease. I can already point out a few things that are wrong or taken out of context, or represent only a small percentage of the Crohn’s disease population. So not an accurate picture at all. And the first real search result was from WebMD. Ha ha ha, No I’m sorry. Not impressed. And this was before I even scrolled down!

Seenso Screen Shot 2017-11-06
Screenshot of me searching Seenso for ‘Crohn’s Disease Treatment’.

Now when I searched Seenso for the exact same thing– I got a very intelligent mix of search results, and not one ad! All were from trusted sources, and some of which I’d never actually seen before, because google never even displayed them to me! {Makes me wonder what else I have been missing out on! Not cool Google!!} You can also see there on the left side of my screenshot– all the information they have available for Crohn’s disease! Just shut the front door on this!! That is awesome!!! And it’s like this for every disease that you search! Not just Crohn’s disease!!! Look at the top of my screenshot, you can just click on “Diseases” and access a whole list of them! I mean… I’m in awe!

Take another look at the multitude of categories on the left side of my seenso search. Now look at the blue box on the google search again. Google doesn’t even touch the tip of the iceberg.

Again, I keep thinking of all the hours I have spent searching the web for that exact information and it’s all right there! It’s been made so simple. Everything all laid out for you… in one place! I love it!

Seenso is still “in the works”, there will be a lot of awesome updates coming in the future. So, now is the time for us chronic illness patients to let our voices be heard! Mei really wants to shape this platform to best serve our needs and she can’t do that without our feedback! So if you are a chronic illness patient or a caregiver for someone with chronic illness, please send your feedback her way! Scoot on over to and give it a try! Search until your heart’s content and then pretty please shoot an email to What did you like about the Seenso search engine? What improvements would you like to see? Your feedback is crucial to the evolution of Seenso and will help so many patients find the correct information about their disease!

I’m excited to see where this cutting-edge search engine technology takes health education in the future. And Mei, thank you from the bottom of my heart for working so passionately on this project for so many years! Your efforts will undoubtedly change the tides for so many to come!

I also welcome any comments here on this blog too! I hope y’all find this resource helpful!

Published by Jana Rosenberger

I blog about my life with Crohn's disease and all things quality-of-life. I don't sugar coat this journey but I do find a way to laugh!

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