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Transcript
Hi, my name is Kimberly Thomas-Tague and I am the founder of #Dazzle4Rare and host of the Signalise podcast.
I’ve got a metaphor for you.
You’ve been asked to plan a party for a group of people. Your partner sent out an invitation that says the party will be inclusive, diverse, and accessible to all the guests. Great. I love it. I would love to attend. Thank you.
Can you plan a menu without knowing if your guests have food allergies?
Do you put on a loud disco system with strobe lights if you have guests who are light sensitive, have epilepsy, migraine or other sensory issues?
Should you hand out Flyers intact without any additional access options if half of your audience is blind, dyslexic, or has a learning or cognitive disability that prevents them from reading the flyer?
If the tables were turned and we invited you to our party, but we made it hard for you to engage with us, that would really put you off, wouldn’t it?
We don’t expect you or anyone else to get things 100% right from the start. Why carry all of this burden and all of the heaviness of this task without sharing it with us, so we can ensure that everybody gets better results?
Not planning can with us in mind can result in discomfort at the very least, and harm at the worst, and can slow down your progress and cost you money. If that’s not enough, here’s more.
Protecting our rights: We can help ensure that patients are informed about the risks and benefits safety. We can work with you to ensure that the research protocol is designed with patient safety in mind. We’re living with the condition, and you may not be. Even if you are, you can’t have the same lived experiences as your cohort. Get some data from us and we’ll work through it together.
Promoting patient centred research: I’m sorry, but we’ve. Going to corner you guys and we need to work equally and together. We can do that with you to ensure that the research questions and outcomes are relevant to our needs, concerns and our communities.
My last point is improving your research quality.
Patient advocates can save you time in the design process. We can help you to foster more transparent and open communication. If you want to look at this from a financial standpoint. Starting smart saves money. You can also save face because nobody wants to issue a statement saying they had to pause their work because they didn’t consult the actual research subjects.
That’s my two cents on why to include patient advocates and clinical trials and research. Thanks to Carol for helping our voices be heard.
