Why I’m starting this blog, and what resources you can expect to be truly empowered in research and medicine
We’re all placing a lot of hope on medical research, and it's true that we need to invest technological innovation to make that happen. However, a massive factor we overlook is you: The patient (or the healthy control!). You have so much power. A whopping 40% of the budget for research goes to recruitment. That’s almost half of the budget (we're talking billions of dollars here), just to convince you to join a study! Without you, the science just wouldn’t get done. You have so much power. But, because of our antiquated systems in research, many patients don't realize their power. Until now.
Do you want to contribute to groundbreaking research? Are you fascinated by your biology? Do you wish your old-school doctor would incorporate more cutting-edge diagnostics and treatments into your care? If you answered yes to any of these questions, then you’re in the right place!
I’ve experienced research on both sides, as a patient and as a member of research teams. Now, I want to share everything I know with you.
But first, a little bit about me. I studied Molecular and Cell Biology at UC Berkeley, because I found so much beauty and meaning in the microscopic world of biology. Wanting to share this with others, I dove into science writing. (You can browse through my pieces on this website!) In undergrad, I did some research in both academia and industry, but I discovered that I have much more fun outside of the laboratory, explaining cool science to people. I pivoted away from research and started helping a biotech startup called Juno Bio recruit for their research study. As a result, I found my voice.
In my science communication, I focus on two things: Understanding and fun. I believe that it’s scientists’ responsibility to explain their research clearly. I also maintain that science should always be fun. Otherwise, what's the point?
For the past two years, I’ve had a ton of fun at a biotechnology startup called ImYoo, where we conducted immunology research. For our first national study on autoimmune flare ups, we asked patients to call the shots. They identified their flares and they collected their own samples. Calling our patients “study participants” didn't feel right. They were doing so much more than passively participating. They were our partners in the research. We asked our patient community online what we should call them and they chose "patient scientist."
So what is a "patient scientist"?
Here's how we defined it at ImYoo: - Patient scientists are people who want to take part in extraordinary research. -They may be healthy people or be diagnosed with particular conditions. -They participate in research studies by providing samples and/or insights that help researchers to understand their biology and improve therapeutic options.
Let's be clear.
You don’t need a background in science to be a patient scientist! You just need curiosity. As a patient, you have more knowledge of your disease through lived experience than any doctor could garner from a textbook. You hold the insights to potentially uncover the next big discovery, because you know your biology best. Patient scientists seek out scientific research to learn more about their biology and continue formulating their own hypotheses (which researchers would be wise to consider!)
Patient scientists have a sense of agency to drive change and create hope for themselves and others. With social media, you have the power to mobilize your community. Your community has the agency to pick and choose the research studies that honor your rights as patients.
I'll use the term "patient scientist" to refer to the research setting. Meanwhile, I'll defer to "empowered patient" in other contexts, like the medical setting. For example, I found myself recently in a doctors' appointment feeling disappointed by my treatment options. I told my doctor, "I don't feel empowered. How can I be an empowered patient? What homework can you give me?" I think this caught him off guard, but it opened up a dialogue for us that made our appointment more productive. It will take time to transform the hierarchical and paternalistic structure of science and medicine into something that's more collaborative. Our terminology is a good start. With these tools, we can transform our relationships with the "experts" to better help them help us.
In a technical landscape with so much scientific jargon, self-advocacy can be tricky to navigate! I’m here to help you recognize your power and venture into the exciting world of scientific research with confidence. The terms "patient scientist" and "empowered patient" give us the vocabulary to take these concrete steps. With this framework, we can navigate resources, mobilize our communities, and bring about real change in the worlds of biotech, pharma, and medicine.
So what's next? Think of me as your resource. If you’re unsure about joining a study or already have a data report you’re trying to interpret, then send it over to me. Let’s take a look at it together, and I’ll give you my honest opinion. I love digging into exciting science and finding ways to share it with more people:) I’ll also continue to write in my blog as a way to keep sharing resources, like where to find study opportunities and which 🚩 red flags to look out for before signing that consent form! Stay tuned and stay empowered.
Loyally,
Emily
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