Michael Joyce is a writer-producer with HealthNewsReview.org and tweets as @mlmjoyce
This 50th podcast is most likely our last.
In it we take a look back at some of the more memorable conversations of the past year.
There’s quite a mix of insights here on everything from what it means to ‘cure’ Alzheimer’s and ‘survive’ cancer, to ‘science-ploitation’ and cutting through the hype surrounding precision medicine and the microbiome.
For those of you who prefer text, here are the top ten quotes in the order in which they come up in the podcast:
Andy Lazris, MD • Internist | from The new &(un)improved doctor-patient relationship
“I think there’s a harm from people over-treating because we’re basing our treatment strategies on guidelines, rather than what patients are telling us. If I just tell someone to get the mammogram, or get the colonoscopy, or refer them to other docs, then I have done myself a service but a huge disservice to the patient. The patient no longer has a relationship with you.
You might as well be a robot.
So there’s that danger of over-treating, but there’s also the danger of under-treating: neglecting what the patient is telling you. Which is really the clue to what’s wrong with the patient. When we take our ears off of what the patient is telling us then we’re going to miss some very important information. And the patient may have a problem that we’re not going to pick up. So harm is a real problem. And the great irony I tell people is that this is supposed to be ‘quality’ – these are quality indicators – and it’s really accomplishing exactly the opposite.
Andrew Holtz • Healthcare journalist | Gutpunch – marketing microbiome hype
“I really fault a lot of journalists, and the model of the news business, for going with the excitement rather than the value. In part that has hurt the long-term health of the news business. Because when you constantly say things that fail to come true, people begin to tune out. Sure, clickbait works in the short run, but in the long run it actually destroys the credibility of the news organizations. It’s a real reason people tune out. It not only hurts the credibility, the moral standing, and the high-minded hopes and dreams of journalism … but I think it’s also a bad business decision, because you train people there’s nothing there.”
Ray Moynihan • Healthcare researcher | The clear & present danger of too much health care
“Without a shadow of a doubt the biggest source of that pollution is industry sponsorship of trials of their own products. How absurd! It’s the wrong way to generate evidence. The results of those studies we know have a systemic or systematic bias in them that is polluting and distorting the medical evidence base. And that may well be one of the biggest challenges for medicine if it wants to maintain public credibility … it must address that dirty secret: it’s entanglement with industry that is terribly corrupting.”
Katherine O’Brien • Breast cancer patient/advocate | The language of cancer
“If I said 40-thousand metastatic breast cancer ‘survivors’ died in the US last year, how could that be true? If they were survivors, why did they die? If we suggest that it takes stick-to-itness to defeat cancer, then that’s not fair. That really minimizes the situations of thousands of cancer patients. Cancer is not, as much as we want to personify it – ‘I’m going to kick cancer’s ass’ – that’s not how it works.”
Jerome Hoffman, MD • ER physician | Emergency docs highlight toxic health care myths
“We did a prolonged resuscitation, which we often do when a child’s involved. But it was obvious it wasn’t going to work and at some point I ‘called the code’ — that is, I stopped the resuscitation. And the father, a very young man, was understandably very upset. He put his face next to mine and screamed at me: ‘What do you mean?’ throwing his arms out in a gesture intended to show everything in the room. And he said ‘Look at all this stuff you got. What do you mean you can’t save her?’
It was a very powerful moment because what he was really saying was he had been taught by of all of us — by television and by advertising and by the healthcare industry — that we have magic powers and we have magic equipment. And it made it inconceivable to him that we couldn’t help his desperately ill child.”
Peter Whitehouse, MD • Neurologist | The problematic promise of a ‘cure’ for Alzheimer’s
“At the core of this issue the question is what are we trying to achieve? Are we trying to take a 95-year old person with Alzheimer’s disease and revert them? To cure or eradicate those memory problems? We don’t even ask seriously what a ‘cure’ would look like. The word ‘cure’ is so powerful that it shuts off people’s ability to think critically about where we should prioritize our resources. The Alzheimer’s Association knows that the easiest way to raise money is irresponsibly make claims that we’ll find a successful intervention. This over-emphasis on biological processes in general – a medical approach – is (to me) problematic. The promise that we’ll have a magic bullet in a short time horizon is irresponsible.”
Richard Harris • NPR reporter | The promise of precision medicine
“These sorts of things like precision medicine come along and become sort of the backbone for funding and framing issues. Companies are in this in a really big way.
There are so many scientists out there that like to crunch big data and here’s a juicy opportunity for them – or so it seems. There’s a lot of money and a lot of interest pouring into this. And a lot of federal grants pouring in as well. That’s a lot of momentum. When you see that kind of momentum behind a movement, and realize it’s not just about the science being great — there’s money behind it, a trend behind it — I think that’s the time for journalists to be more cautious and ask: ‘How much of this is real and how much of this is hype?’”
Tim Caulfield • Health law & policy | Fighting Goop & cheating death
“People like Goop and Gwyneth and anybody who is marketing an unproven therapy, what they’re doing now is using scientific language to sell. In order to give this sort of veneer of legitimacy.
So you have stem cell researchers plodding along, hoping for a positive result; and in the meantime you get these people pushing unproven therapies and leveraging the language of stem cell research who say: ‘Hey! I’ve got a treatment that works right now!’ And they’re using the excitement around stem cell research — the ‘science-ploitation as I call it — to market their products. You also see this with the ‘microbiome. In fact, one of the ways the ‘raw water’ people market their product is to leverage microbiome language. You’ll see it with genetics all the time.
So what you have is this slow-moving, real science, and then the language of that real science is being leveraged by the marketers of unproven therapies to get their stuff across.”
Deanna Attai • Breast Surgeon | Doctors who blog
“I’ve seen the difference [blogging] can make. Especially in the BCSM – or “Breast Cancer Social Media” community. It’s the difference an engaged physician can make in terms of patient education, patient reassurance, and patient empowerment. And we hear it over and over again that patients want us there. I feel it’s part of my responsibility as a physician. It’s just an extension of what I do in the office.
Social media allows physicians to get out good quality, evidence-based information to a potentially large audience. And help combat or dilute a lot of the misinformation regarding procedures or diseases that’s so prevalent on the internet.”
Steven Woloshin, MD • Healthcare researcher | The polluted stream of health care information
“There are problems at each level of the journey [of health care information]. We need the researchers to do a better job in how they report their results. We need journalists to do a better job in discerning what to cover and what not to cover. Some things are too early or not ready for primetime that shouldn’t be covered. And when reporters do cover things to include things like caveats. Make sure to quantify things. All the things that are in your HealthNewsReview checklist.
But then the public has a responsibility too, because there’s all sorts of medical information out there of varying quality, and the public really has to work at being skeptical otherwise they’re going to be misled.”