She explains: "My Health Sensei is like Yelp but to help cancer patients find the resources they need to live their lives during treatment." The site offers an expanded explanation:
When you’re diagnosed with cancer and looking for support, My Health Sensei provides real reviews from people who have been through it before. My Health Sensei aims to be the simplest to use resource finder to help patients, caregivers and health professionals find exactly what they need as quickly as possible.
Take a look, check it out, participate, and share!
I never know what to say about such things. They're usually a noble idea, but so often they (ironically!) don't reflect how informed patients see things.
ReplyDeleteThe only disease I know anything about is kidney cancer. What I do know is that the Kidney Cancer Association was USELESS to me during my disease; among other things it had no current info at all about IL-2, the treatment that saved my life.
Then I discovered that KCA's president, Bill Bro, persistently used the patient listserv on ACOR.org to advocate for his political interests. Great.
And when I proposed to them a flyer "Kidney cancer from the patient's perspective" (twice), they never even acknowledged the email.
And what does Sensei list? Do they list ACOR, or its successor SmartPatients.com? No; they list the Kidney Cancer Association.
Finally, the first thing patients are taught when assessing health info on the web is to ask "Who's behind it?" So I clicked the About Us page, and there's not a WORD about who sponsors it. Just "don't ask us, ask your doctor"!
I wish them well, but more, I hope they get off the starting line and REALLY talk to patients who have been in the trenches with the disease. Right now this site gets an F from me.
I'll ask my lung cancer and breast cancer buddies to have a look too.
e-Patient Dave, my name is Ariana Vargas, and I created My Health Sensei. I want to first apologize for the lack of great resources related to kidney cancer. To give you a bit of background on me, I started My Health Sensei after spending the last three years working for a resource that has helped cancer patients raise more than $100 million to cover their out of pocket expenses after a medical crisis. After speaking to thousands of patient advocates (social workers, case managers, etc) and thousands of cancer patients and caregivers, I realized that it's not as easy as it should be to find the resources you need when you are a cancer patient.
ReplyDeleteSo, in 2013 I started compiling a master list of every resource I'd heard good things about and started organizing them in a way I hoped would make sense to patients, their loved ones, and healthcare professionals. My ultimate goal is to make it quicker and easier for a newly diagnosed patient to find helpful resources. More than that I wanted to build a platform where people who had been through cancer before (like you) could share their opinions, so the newly diagnosed don't end up wasting time with resources that aren't as helpful as they appear to be.
In this vein, I would be so grateful if you would share what you did on Paul's blog on MyHealthSensei.com. Reviews like yours, are EXACTLY what I hope people will share on my site so that the next person diagnosed with Kidney Cancer that visits the page can find what they are looking for.
I will be adding both of the resources you recommended to the site tonight. Thank you so much for letting me know that they were so helpful to you. If you do have time to leave reviews of those and of KCA, I think it would be tremendously helpful for other kidney cancer patients.
As a final aside, I will let you know that this has been a passion project of mine for more than a year. I have worked on this exclusively on nights and weekends in addition to a full time job because I believe it needs to exist. So while I'm so grateful for your comments, which will help me make an even better service for those in need, I ask for your patience and understanding as I am only one person and must work to support myself while simultaneously trying to bring a dream of mine to reality.
Thank you again for your honest feedback, and please feel free to email me directly if you have other resources you think I should add or any other feedback: ariana@myhealthsensei.com.
Hi, Arianna! It's great to meet you.
ReplyDeleteTo be clear, I fully support your intention - i just don't think the site is there yet - the advertised "reviews by people who've been there" pretty much don't exist yet, right? The sites you've listed were not selected by experience patient communities, right?
If so, I'd suggest that the wording be changed to reflect status and plan. Or perhaps I'm misunderstanding something.
I will indeed try to find some time to write something up for your site. Heavy travel this month. If you don't hear back in a few days, remind again - Paul has my email.