Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Tuesday, December 5, 2023

The Patient Voice Deserves a Paycheck: Here's What to Charge

We have to get past what Amy Farber  had to say, For the past five years Amy Farber  has been battling not only her own disease but also the wall of resistance erected by those who believe that a patient can make about as much of a meaningful contribution to the process of scientific discovery as a laboratory rat. LAM, lymph-angiolio-myomatosis. She co-invented a revoluntionary web service with MIT Media Lab that enables patients to participate in the search for their own cures.
 

Very obviously nothing I've done in the past 12 years has made a bit of difference in stroke, but I'm persistent.  Hell, I'm worth more that any stroke association leader out there, they do nothing to solve stroke!

The Patient Voice Deserves a Paycheck: Here's What to Charge

Last updated: December 2023

Time and time again, we hear the question, "How much should I charge for my patient advocacy expertise?" It's an ongoing and worthy debate for Patient Leaders in the health space.

Before we determine how much to charge for Patient Leader services, we first need to understand the following:

  • What type of service are you offering? (i.e., blog post, speaking engagement, feedback on clinical trial design/protocol)
  • Who (or which company) is requesting this service? (i.e., pharmaceutical/biotech, nonprofit organization, medical school)
  • How much time will you need to perform the (tasks involved/service), including any prep work? (i.e., one-time or ongoing engagement)

When you first began your patient advocacy odyssey, you may have never even considered asking for compensation. Perhaps you were simply trying to lend a helping hand in order to make a difference in a health community. What many quickly learn is that you are providing value to organizations and companies as well as your time and knowledge, as a subject matter expert, for free. While being a Patient Leader isn't all about money, your expertise provides value to someone else and is therefore worth something! If we compensate key opinion leaders, then why not do the same with Patient Opinion Leaders?

Fair market value calculator

To determine how much to charge for your advocacy work, there is now a fair-market value calculator that the National Health Council created to demonstrate how much a patient or caregiver should be getting compensated. This calculator can provide evidence on your reasoning behind charging a company or organization the amount you requested.

Fellow Patient Leaders have shared with us that it's often easy to undervalue your expertise or be willing to do something for free, especially if it's for a nonprofit organization in your community. Even though you know your time is valuable, this may be something you still struggle with since you want to continue helping out your community. In these cases, you can ask yourself what other non-monetary value could be exchanged for your involvement in a certain opportunity - a free trip to a conference or convention, networking opportunities, testimonials, video content you can add to your website, and more.

You're valuable

Ultimately, it's important to know your lived experience as a patient and/or caregiver is valuable, especially if it benefits another organization or company.

Remember, your time and expertise is worthy of compensation!


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