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Myasthenia Gravis Appreciation Weeks

by Brett Alder on October 12, 2013 at 11:28 AM

At Feelalike we believe in the power of sharing.  We're currently in an alpha release and looking for feedback on what we've done so far.  We wanted to give a big thank you to those early adopters in the Myasthenia Gravis group that have been willing to try things out.  And also find out: "What will happen when people with the same health problems come together to share solutions?"  We don't know!  And the suspense is killing us!

So we'd like to express our appreciation by hosting a treatment rating party with prizes:

1st Prize: An iPad Mini

2nd Prize: $100 Amazon Gift Card

3rd Prize: $75 Amazon Gift Card

How do you enter the drawing? Simple.  Every time you do one of the following activities, your name will be entered into a lottery.

  • Create an account
  • Someone marks your treatment review helpful
  • Someone likes one of your posts

So, for example, if you sign up and two people mark one of your treatment reviews helpful, then your name will be entered three times into the lottery.  The more you share, the better your chances of winning!

If you have Myasthenia gravis, you can click here to join.   

Let the sharing begin!!

 

Some additional rules:

  1. We ask that at least 10 people participate in the contest (invite your friends!)
  2. Winners must have a picture and be using their real first name (Your Feelalike account information is not public  -- it's only visible to fellow sufferers on Feelalike.  It's like attending an MG conference).  
  3. The contest will end on October 28th (still leaving you time for that epic Halloween experience you've been planning).

 




Coming out as an ePatient

by Brett Alder on October 7, 2013 at 4:48 PM

For many of us first time ePatient scholars, the experience of Stanford's Medicine X conference began many months ago with an idea.  The idea that regardless of how we were treated by our practitioners (good or bad), there was a conference that empowered ePatients -- gave them a chance to sit on panels, to present on the main stage.  This is exactly the validation that so many of us yearned for.  

 
It all sounded great, and on the interwebs all I could find were glowing reviews of #MedX.  I kept wondering "What's the catch?"  For the selection process I expected some type of quota or litmus test.  So many cancer patients, so many young people, etc.  Having a rare condition with no existing diagnosis I assumed that once again there would be no place for me.  Then I got an interview with amazing people like Sarah, Britt, Liza and Nick.   
 
It was really my first time talking with other ePatients.  I had thought about a lot of things, but never really talked about them with like-minded folk.  I had allowed the nature of my condition -- an allergy to sex -- to isolate me.  I thought they were going to question my sanity, but found them saying instead, "Yeah, I've been through that."  When they told me, "You've been accepted as an ePatient", I kept thinking, "Just like that?  Don't you need to see my medical record or something?"  Nope, they knew a fellow ePatient when they saw one. 
 
The surprises kept coming.  They were going to allow me to present, and would make a short video about my story.  This was a great relief.  In my own case, it's almost impossible to describe my story in less than five minutes.  "Allergic to sex, what does that mean?" or "You're not seeing a doctor for your condition, why not?"   I wanted to attend regardless of whether or not I presented, but I couldn't imagine how I could pack things into an in person 30 second introduction.   Fortunately, I didn't have to. Medicine X seemed to be shaping up as one of those rare experiences in life where other people were more considerate of my needs than I was myself.  
 
The experience at Med X was more of the same -- magical really -- and at last I came to understand "the catch."  During our orientation dinner the night before the conference the advisory board made clear that it wasn't about us, but about the responsibility of representing Medicine X and the ePatient perspective.  You know, that whole "great power -> great responsibility" thing. 

 

What I got out of Med X was different from what I was hoping to get.  I wanted to shine a light on my rare disease and make it seem just a little more normal.  I wanted to join the ranks of people trying to make life easier for ePatients.  But that's not the most important thing I took away.  
 
It's difficult to describe the feeling of being with so many powerful ePatients.  Before Medicine X I was an ugly duckling.  I looked healthy, but wasn't able to participate in all of the healthy people activities.  And I didn't talk about my suffering, so other sufferers didn't know they could relate to me.  
 
After sharing my story I became a part of this family that I didn't know existed.  Of people who showed great strength and courage, but whose bodies gave out from time to time -- just like mine.  And when that happened over the weekend, and ePatients came together to support each other, there was no shame -- only understanding.  When one of our fellow ePatients had to leave the cocktail hour and lay down, a couple of us helped her find a place and stayed with her.  She never apologized for the inconvenience -- that would have been inappropriate.  We just talked and laughed and what amazed me was how comfortable she was exposing her weakness, because of course, we had exposed our own.  After she felt better we all continued with the evening.  There was this sense of harmony or what the Japanese might call "wa" -- a feeling that everything has happened just exactly as it should.  An experience that leaves you feeling just a little bit more alive.    
 
Some people commented that it took a great deal of courage to present my story.  I truly appreciate the compliment.  I'll admit to feeling undeserving of the praise now that I feel fine.  After having suffered from chronic pain for 8 years, I know what some of my fellow ePatients are going through -- travelling, getting by on little sleep, toughing it out.  I know it takes more courage for many of them to face a normal day or another sleepless night, than it did for me to share details about my personal life.  So thank you to all of my fellow ePatients for representing, for sharing your stories, and giving so much of yourselves.  You form a group of people I'm damned proud to be a part of.   And thank you to Dr. Chu and Medicine X for elevating our voices and making all of this possible.  For ePatients the magic isn't at Disneyland, it's at Stanford's Medicine X.  

 




Own Your Health Like You Own Your Phone

by Brett Alder on March 21, 2013 at 6:30 AM

Every week there is a new report *gasping* at yet another deficiency in the healthcare industry.  Headlines stating that costs are obfuscated and rising, doctors are slow to adopt new technologies, and we spend too much time reacting to -- and not preventing -- disease.

 

 

Is the healthcare industry dysfunctional?  Cross-dysfunctional maybe?  Not really.  It is doing what it was designed to do.  “But it’s not working for patients!”, you say.  That’s true, because it wasn’t designed to work for patients.  Allow me to explain...

...but first let me point out that I cannot recall a single article or post claiming that the cell phone market is dysfunctional.  Companies like Nokia and Blackberry may be struggling, but from a consumer's perspective, it is a pretty amazing industry.  In the mobile market, if costs go up it is because we’re getting a lot more value (a better smartphone, 4G, more minutes) that we want very badly - i.e. so much that we’re willing to pay for them.  Speeds are up, displays are gorgeous and options abound.

There’s a very simple reason why consumers are delighted with the mobile phone market - because they control almost all the value.  Nokia only gets a slice of the value pie if it makes customers happy.  AT&T is beholden to users because it wants to keep them from switching to Verizon.  App developers’ only prayer of getting any value is if they absolutely wow their users.   So let’s answer the following question:

 

What value do mobile consumers control?
 

Superpower:

Answer:

Why?

Snark

Choice of cell carrier?

Often yes.

Sometimes employers decide, but both consumers and employers have equal tax treatment.

Can you hear me now?

Choice of cell phone?

Yes.

Sometimes determined by employer, but very often by consumer.

Blackberrys used to be called Crackberrys?!?

Choice of cell phone plan?

Yes.

Various plans.  Pay-as-you-go, family plan, options for data, texts, minutes.  

 

Choice of apps, music, video, photos?

Yes.

Over one million total apps.  Jailbreaking is legal.    

Is there a jailbreak option for my health?

Incentive to research, rate and review phones, apps, music, videos, photos etc.?

Yes.

Since we choose them, we demand an ecosystem that informs our choices.

“Enjoying Angry Birds Star Wars?  Rate it!”  

Ownership of costs of phone, apps, music, videos?

Yes.

Consumers highly incentivized to seek best value.  

That app is $3.99!?!? What does it do, cure cancer?

 

Conversely, let’s ask the same question about healthcare:

 

What value do patients control?

 

Superpower:

Answer:

Why?

Snark

Choice of insurance company?

No.

Usually chosen by employer because they receive preferential tax deduction treatment that patients do not.

“15 minutes coulda woulda shoulda saved you 15% or more on health insurance!”

Choice of doctor?

Sort of,  not fully.

“In network” doctors are pre-selected by insurance company.  Not all doctors accept Medicaid/Medicare.

You’re welcome to choose any Kaiser Permanente doctor you’d like!

Choice of insurance plan (conditions and treatments covered).

Nope.

Determined by combination of employer, insurance company and law.

Non-smoker?  No prostate?  No problem.  You’re still covered!

Choice of treatments?

Not really.

Often require a prescription or consent from doctor, who chooses from a subset not deemed illegal by FDA.  

Patient: “I love you.”  Treatment: “I know, but the FDA says we mustn’t be together.”  

Choice of price paid for treatment?

No.

Prices are very opaque.  Often borne by buyers (insurance companies or Medicare/Medicaid) and negotiated with sellers (doctors, hospitals).

 

Incentive to research, rate and review doctors, hospitals and treatments?

Kind of.  

Rating systems thrive when consumers have choices to make.  The fewer the choices, the weaker the information ecosystem.

Looking for a great treatment rating site?  Point your browser to “feel alike dot com”.

 

So why aren’t medical device manufacturers more concerned about costs to patients?  Because one of their first priorities is pleasing the FDA and qualifying for an insurance reimbursement code.  Why aren’t insurance companies more zealous about keeping patients happy?  Why should they be?  As long as they keep your employer happy and comply with regulations, they get paid.  What energy is left for wooing you?  

 

Patients don’t feel super because they don’t have any superpowers.

 

Cue the graphics:

 


 

Patients already own their health problems and their pain.  They should control the means of making themselves healthier.  Building FeelAlike is our own humble step toward empowering patients people.  

 

Follow us on twitter: @FeelAlike and @AlderBrett.






Team Intro

by Brett Alder on March 10, 2013 at 5:37 PM

Feelalike will be the product of three best friends who are crazy enough to spend our vacation time developing the best health social platform we can think of.  Since I’m the one with the chronic condition and my two co-founders are as healthy as oxen, they’ve shown an incredible degree of compassion and deference to my perspective as a sufferer.  We hope you’ll notice that Feelalike was designed for you.  Simple and elegant.  

We'll be coding away the next several months and we look forward to building the Feelalike community together.  




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