Agreed. This is the worst (dumbest) post I’ve ever seen on here. Freely distributed pain killers devastated tens of millions of lives over the past couple/few decades. Pot is supposedly great for helping with chronic pain and is legal in many (most) states for medical and/or recreational use. This was a zero research and zero thought post.
Huh. I can see that, especially for peds and other mostly-office and clinic-based care. In the mostly procedure-based world I work in, patient satisfaction metrics have radically changed the picture for the better. The two main things it has changed are patient communication and staff interaction. Physicians talk with their patients before and after procedures now, compared to before when there were many docs who never spoke to the patient, ever. The second big change is that staff are attentive to patients, especially during post-procedure recovery. Before, it was too common for patients to be dropped into recovery rooms and forgotten about.
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While what you wrote about pain killers and weed is true, some people, like my wife, do not like using weed, and thus are best served with pain killers. It took her years to be able to get a prescription for an opioid for her chronic pain. She was so scared that simply asking for one would get her on some list. She’s been on the same dose for years, and her pain is well-managed. What isn’t well-managed is the system that still demonizes people who use opioids. When she had a minor surgery, and the surgeon prescribed the same opioid for a few days, the pharmacy balked at the double scripts, and the confusion meant she had no meds for several days. Those are the situations where desperate people seek out alternatives that could prove deadly. Now, this particular article is about something that isn’t used for chronic pain, so it doesn’t really apply, but the process that has kept methoxyflurane from being available in the US is similar to the one that makes getting pain meds so difficult for the people who need them.
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Yeah, OR’s are a whole different world from where I am. “Outcome measures” are tough to define when the worth of my work is not evident for decades to come. So the dreaded questionnaire takes the place of data, because it is quantifiable, comparable and most important, easy to gather. Of course, the results are horribly skewed because people who are pissed are far more likely to fill them out.
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A shame about the suffering and suicide though.
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Well, why didn’t they drink tea and go for a walk! That would have fixed them right up! /s
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PREMs vs. PROMs? Experience and Outcome are obviously not the same thing. My limited involvement suggested that Outcome is given more weight (you got better, why would we worry about how you felt about that process?) than Experience. But I’m in the UK where patients are not customers. Maybe it’s different there.
What? From the inestimable Ellsworth M Toohey? Surely not!
The problem in my field is, how do you measure that? I could (and have) spent a lot of time getting folks to vaccinate their kids. If i get them to get at least some vaccines, i consider that a win. My employer sees that i failed to fully vaccinate them, and my rating goes down. I take extra time to explain why antbiotics are not needed for a cold. Fewer wRVUs, rating goes down. Taking time to let parents of autistic, trans, or just plain out-there kids vent, or talk them off the ledge. Excessive time, other parents had to wait, on time rating goes down. Now, here’s the real thing. I’ve been doing this 30 years, my productivity is top 5% in the organization, no one is going to say “boo” to me. BUT the young newbie who doesn’t have that security isn’t going to do these things and risk losing income. I fear where we are headed with this. I am nearly 60, figuring 5-7 years until retirement. No clue what happens when me and the other old timers hang it up. Nothing pretty, i am thinking.
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… that glossary is going to have to get longer
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Sorry - Patient Reported Outcome (or Experience) Measures.
(The Outcome that the patient reports may not align with their Experience of arriving at it. But to measure one and think you are getting the other is an error. Some people may assume that if Outcome is wonderful the service delivery Experience that got them there must be too, but this is clearly not always true. And vice versa, even if possibly less often.)
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Work relative value units. How they measure income genetated when they are not allowed to just use dollars. Because that would penalize folks who see Medicaid patients, while incentivizing seeing only private insurance. It’s actually a good thing, it’s just kinda opaque how they decide what things are worth.
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Is it so weird to be want to be treated like an adult human person in that process? Maybe things aren’t so different in the UK.
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I’m not saying that people aren’t treated as adult human persons. My…
… was an entirely cynical and exaggerated characterisation to emphasise the point. But having been intimately involved in the design of some PREM research (providing patient input) in the relatively recent past I gained the impression that PROMs are far more frequently used in the UK than PREMs. That was an impression that may be wrong, of course, but it seems possible that in a health service that is not free at the point of delivery, where the patient IS a customer, PREMs might well be used more often.
Patient autonomy and advocacy are critical, of course (I participate in some research PPI groups - Patient and Public Involvement) and this is always a high priority when reviewing research applications, but I’d rather be treated dispassionately and professionally with more of a focus on the outcome, than be treated as a customer to be pleased and placated by the process and the people treating me. The research I was involved in was specifically focused on a PREM for a particular service that knew the outcomes, but wanted to dive into the experience to see if it could improve the way it delivered its services from the patient experience perspective, as well as the actual outcomes. I got the impression this was slightly unusual.
@anon29537550’s noting of parents outraged that antibiotics were not prescribed is interesting. I wonder if it happens much more often in the US than UK? My guess would be it does, that UK patients will accept what their GP tells them about the need for antibiotics (and as a partly centrally-led service, the NHS is in a position to, and has, heavily publicised to staff, patients and the public that antibiotic over-prescription is a problem) whereas in the US the ‘customer’ entitlement leads to patients to report a bad experience if they don’t get their way with what they personally think should be their treatment.
But this is all a simplification of a complex topic, of course.
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I’m a chronic pain sufferer for the last 7 years after a workplace accident. Bonus points for having to navigate the workers comp circus.
I’ve had some gnarly injuries over my lifetime and my docs have always denied me narcs.
For work comp I was prescribed in no particular order: ibuprofen, lyrica, gabapentin, cyclobenzaprine, and baclofen. None of those drugs helped, and most had side effects that were debilitating.
I had an amazing PA who I was able to convince to prescibe me low dose naltrexone (ldn) as an off-label pain medication. He said he’d do research and then get back to me. It took 2 weeks and, and after okaying the treatment (thanks work comp for your “speedy” agreement) I was prescribed the medication. It took another 2 weeks to titrate up to my dose but then I finally saw relief.
Work comp ended and I needed to get a prescription from my pcp. I presented my research to my doc and the first words out of his mouth were, “I need to refer you to addiction specialties for this med.” Naltrexone, to be fair, is a drug prescribed for opioid addiction/abuse, but the lower dose in ldn has shown promise in treating chronic pain (plus I had 6ish months of anecdotal evidence).
Doc refused to deviate from his decision to refer me despite no evidence that I had ever taken opioids in the past. Every followup with him was me presenting my case and him saying that addiction specialties would first have to counsel me before they’d refer me back to him to so he could prescribe naltrexone.
Finally I said fuck it and found an online company (agelessrx) who was then able to get me the ldn.
Long story short: chronic pain sucks - any treatment that works should be pursued
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I’ve spent a few decades in various parts of the drug and medical device world and you WANT the FDA to take the time they do in verifying things. Now, do drug companies inflate the costs and/or only push stuff for review that they know they will make a profit on? 99% of the time, yes absolutely. Look up the Orphan Drug program for how it can not be profitable and awesome, which, amusingly, gave us ivermectin of fake covid cure fame.
Most of the time, and this is a very large majority of the time, when the FDA approves something, it’s safe for the given use. For decades it was so good that other global regulatory bodies would essentially rubber stamp anything they approved.
It’s bureaucratic, is slow as a dinosaur, but the process they do to check things work. That slow process protects you. From working in the industry, I was amazed at how fast the vaccines got approved. I mean, there’s clinical studies for products that have been being evaluated for a decade, per a research paper I did for my most recent degree. Generally, they do a very good job and you don’t even notice.
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Indeed, but seeing value in government regulation is contrary to the (libertarian) party line at Reason dot com,* isn’t it now.
*Source of piece summarized in the OP
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Walking to Poland or someplace does sound inconvenient.
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Very true! It would be!
Also…
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As someone who lives in chronic pain, and have had to suffer the hassle, embarrassment/humiliation, physical pain, and extra medical costs when they re-scheduled Tramadol and cracked down on opiates after letting the Sacklers manipulate them for years - a hearty “fuck you” to the FDA and DEA.
Fixed!
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