“What do patients want?”

“What do patients want?”

I’m surprised how often I still get asked this. I’m never really sure what to say. What do we want? What would anyone want? We want to know what is going wrong in each of us and how to fix it.

But we aren’t there yet you say? We need better tools and more data and more funding for more projects eh? Fine, take my blood, strap onto me whatever wearable you want, give me every questionnaire you have to fill out, and churn it all into data for your next paper. You can even parade me in front of the masses and ask them to open up their wallets for your work. No problem. But tell me, is any of that helping you figuring out what is wrong with me?

Sure, you think all that might lead to clues that could help prevent the next generation from getting what we’ve got. Or perhaps you’ll be lucky enough to find some common thread that brings the whole puzzle together and allows us to stomp out this disease forever. What a day that would be.

Problem is, there is no disease there, is there? We are the proverbial scholar searching through a dark room for a black cat that isn’t there. We’ve been sifting through biology hoping to find a match to a 200-year-old clinical label, unable to accept that what we’re looking for doesn’t exist.

So, coming back to your question, what do patients want? We want you to explain, how exactly it is that this next drug you are trying on all of us will work for me? What is it in my specific biology that you think this drug will help? Stop trying to lump me into boxes with thousands of patients who share nothing but a label. Just tell me what’s wrong with me and how to fix it.

I know this is tough and that it is asking a lot. I get that there are obligations and constraints that limit what you can do. But since you asked there is one other thing I’d want. Stop asking yourselves what we can do with the tools that we have and the system that we got. Instead ask what needs to be done to get patients what they need. Maybe just maybe, if enough people make that switch, then the patients you now know will still be here the day you can say, I know what is wrong with you and here’s how to fix it.

– Benjamin Stecher

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