Sally Okun on How Informed Patients Feel When Starting Treatment After a New Diagnosis

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The most common question patients ask when they start a new treatment after a new diagnosis is "what will this do to me?" explained Sally Okun, RN, MMHS, vice president, Policy and Ethics, PatientsLikeMe.


How well-informed do patients usually feel when they start treatment after a new diagnosis?
I’m not so sure I can point to any 1 data point that would say, “well, this is how well informed they are.” What I would say is that over the course of the last number of years, as we’ve created a framework for what we call, “the patient and caregiver journey,” we’ve identified different points in time across that journey and the kinds of questions that patients have and the things that they are experiencing during those different stages. And so, we have again distilled that down to about 6 common questions that most anybody has. Regardless of what their condition is, they seem to pretty much all fall around the same 6 questions, and 1 of them that I thought was interesting, in light of your question, was that, “what will this treatment do to me?”, or, “what will this diagnosis do to me?”, or, “what will this prescription drug that you’re going to prescribe for me do to me?”

 So, I think what we’re finding is that when patients come into an environment like PatientsLikeMe and tell us about that journey they’ve been on, what we’ve learned is that they didn’t have a good understanding in the beginning, and these are the kinds of questions that they needed to ask, and they didn’t necessarily get the answers that they needed. So, when they come into an environment like ours and they start asking other patients, they’re starting to get some information that they wouldn’t previously have gotten maybe from the clinician. It’s not that the clinician isn’t giving it to them; they might be giving it to them in a form that isn’t necessarily digestible for the patient. It’s not as easily understood as another person telling them about what that treatment had done for them and not necessarily saying, “it’s going to do the same for you, but these are the things that I experienced.”

You’re question made me pause, and I almost asked you not to ask me because I didn’t have a data point I could point to, but I think the interviews that we do continuously reinforce that patients have many, many, many questions, and they often are the kinds of things that don’t necessarily get addressed, but that one question of, “what will this do to me?” is, I think, what gets the closest to what you’re asking. And so, it’s 1 of our 6 common questions that all patients ask, regardless, again, of the conditions they have, and they don’t necessarily get it answered all the time. 
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