I agree that the healthcare system is not conspiring against our cancer survivors but there is substantial harm being done through the lack of education for all individuals touched by cancer about the benefits of such lifestyle interventions such as exercise, nutrition (especially promoting diversity of gut microbiome), stress management, optimizing sleep and more. Why are health care practitioners not given the appropriate time to educate their patients and systems ignore the need to link "all" patients to navigators, integrative/lifestyle programs, exercise resources and more? Simply because there is no money to be made in these services. In the process individuals live the real consequences as they are "cared" for in our clinics. Systems will not change until we have a payment model (value based care) or policies that require this type of care. What can be done right now? We need to train patients how to advocate effectively for the type of care that they deserve. Stacy, thanks for always advocating for survivors (those living with and beyond cancer) and making their voices louder.
Absolutely! At some point, this is going to require a mass movement...similar to the HIV-AIDS and breast cancer movements. Once we are organized with what we want, it will require long, sustained effort by thousands of survivors, caregivers and professionals. A Congresswoman once told a breast cancer advocate that politicians will only vote for something if they're scared of you. We need to make them "scared" of the cancer survivorship movement so we can get some action!!
“Simply because there is no money to be made in these services.” Nail on the head.
Self advocacy is the best tool. Then we spread the word from there. We can build a better community for ourselves and not rely solely on the medical community. It seems that the narrative today is to point fingers, blame others for what we need. WE can help. If WE help one person a day and they help one person a day exponentially WE can make a difference.
Thanks for the shoutout Stacy. Like so many things that produce the proverbial "They", illness is often a loss of control that sends people searching for answers. Everyone is welcome to return with whatever answers they find, but that does not necessarily mean that those answers are true. I for one would not be here if I did not trust the medical system.
As for the social media mavericks offering silly truisms, I can just imagine them counting their impending likes before really thinking through, "Cut you open before suggesting breathwork, sleep or sunlight." My truism for these people is something like: "They'll make you do seventeen coffee enemas before thinking about checking your bloodwork."
All I know for sure is that MDAnderson does not support lifestyle interventions except at the most distant margins of "care". The only reason I can see for this is that they are not revenue sources. I don't know why I should think the above-mentioned conference presentation matters. Exercise is really good for you and it is absurd to need studies to prove it or promote it.
That's an interesting thought. Most journals are not run by "doctors" per se but large publishing conglomerates like Springer. President Biden introduced a bill in 2022 that would make all NIH funded research publicly accessible. I believe President Trump has sped up that implementation. Although most communication staff have been "DOGE'd" from the NIH so I'm not sure who will implement the policy. In regards to negative publication bias, we can't know what we can't know. I'm less concerned about publication bias and more concerned about the increase in predatory journals that publish crap science.
It is very easy to be unaware of publication bias because by definition the public can't see it. Working doctors can't see it either but at least they know it is happening (I hope). A while back I was looking at a specific NIH grant that allocated a large amount of money (circa $2 million) and was marked as completed in 2011. No papers were published and moreover no raw data was transmitted back to NIH. How much do you want to bet that was a negative trial? The thing they were studying was already on shaky ground as far as evidence is concerned. Color me cynical.
The PI is very established and working for a huge research university so please don't tell me he couldn't find a publisher. So I agree doctors aren't hiding a cure for cancer but they are definitely hiding data.
I suppose that’s possible. NSABP 51 was presented at the San Antonio breast conference almost three years ago and only recently published. Sometimes processing and publishing the large studies just takes time.
It’s also a bit ironic that you’re accusing doctors of hiding things while posting under a pseudonym. Doctors and researchers may make mistakes or misinterpret data, but they do it under their real names.
Here is some non-anonymous info on publication bias by Cochrane (ie real EBM experts unlike myself).
"Trials with positive findings are published more often, and more quickly, than trials with negative findings."
"Completed research is frequently left unpublished (Dickersin 1990). It has been suggested that in the case of research conducted on humans, failure to publish represents scientific misconduct, since individuals who consent to participate in research, and agencies that provide funding support for these investigations, do so with the understanding that the work will make a contribution to knowledge (Chalmers 1990). Clearly, knowledge that is not disseminated is not making a contribution."
Hopewell S, Loudon K, Clarke MJ, Oxman AD, Dickersin K. Publication bias in clinical trials due to statistical significance or direction of trial results. Cochrane Database Syst Rev. 2009 Jan 21;2009(1):MR000006. doi: 10.1002/14651858.MR000006.pub3. PMID: 19160345; PMCID: PMC8276556.
You made specific accusations about a specific PI, a specific grant and a specific reason for not publishing. As well as "hiding" data. A Cochrane analysis from almost 2 decades ago does not support your conclusions about that particular situation. I don't know why that researcher didn't publish but my personal experience does not reflect your cynicism. It's easy to be cynical. It's harder to hold on to hope.
I think our views on why patients don't trust doctors are not aligned. You see it through a lens of misinformation. I see it as failures within medicine itself. I tried to state my case with references to a specific example that affects me as well as referencing a study by Cochrane. I'm sorry that didn't satisfy you. We will have to agree to disagree.
I agree that the healthcare system is not conspiring against our cancer survivors but there is substantial harm being done through the lack of education for all individuals touched by cancer about the benefits of such lifestyle interventions such as exercise, nutrition (especially promoting diversity of gut microbiome), stress management, optimizing sleep and more. Why are health care practitioners not given the appropriate time to educate their patients and systems ignore the need to link "all" patients to navigators, integrative/lifestyle programs, exercise resources and more? Simply because there is no money to be made in these services. In the process individuals live the real consequences as they are "cared" for in our clinics. Systems will not change until we have a payment model (value based care) or policies that require this type of care. What can be done right now? We need to train patients how to advocate effectively for the type of care that they deserve. Stacy, thanks for always advocating for survivors (those living with and beyond cancer) and making their voices louder.
Absolutely! At some point, this is going to require a mass movement...similar to the HIV-AIDS and breast cancer movements. Once we are organized with what we want, it will require long, sustained effort by thousands of survivors, caregivers and professionals. A Congresswoman once told a breast cancer advocate that politicians will only vote for something if they're scared of you. We need to make them "scared" of the cancer survivorship movement so we can get some action!!
“Simply because there is no money to be made in these services.” Nail on the head.
Self advocacy is the best tool. Then we spread the word from there. We can build a better community for ourselves and not rely solely on the medical community. It seems that the narrative today is to point fingers, blame others for what we need. WE can help. If WE help one person a day and they help one person a day exponentially WE can make a difference.
Thank you for your insight.
Eat right
Exercise
Engage
❤️🩹
Thanks for the shoutout Stacy. Like so many things that produce the proverbial "They", illness is often a loss of control that sends people searching for answers. Everyone is welcome to return with whatever answers they find, but that does not necessarily mean that those answers are true. I for one would not be here if I did not trust the medical system.
As for the social media mavericks offering silly truisms, I can just imagine them counting their impending likes before really thinking through, "Cut you open before suggesting breathwork, sleep or sunlight." My truism for these people is something like: "They'll make you do seventeen coffee enemas before thinking about checking your bloodwork."
"seventeen coffee enemas"😄
All I know for sure is that MDAnderson does not support lifestyle interventions except at the most distant margins of "care". The only reason I can see for this is that they are not revenue sources. I don't know why I should think the above-mentioned conference presentation matters. Exercise is really good for you and it is absurd to need studies to prove it or promote it.
"large-scale coordinated campaign by doctors to keep information from our patients"
What do you make of journal paywalls and publication bias (as in don't publish negative studies) .
That's an interesting thought. Most journals are not run by "doctors" per se but large publishing conglomerates like Springer. President Biden introduced a bill in 2022 that would make all NIH funded research publicly accessible. I believe President Trump has sped up that implementation. Although most communication staff have been "DOGE'd" from the NIH so I'm not sure who will implement the policy. In regards to negative publication bias, we can't know what we can't know. I'm less concerned about publication bias and more concerned about the increase in predatory journals that publish crap science.
It is very easy to be unaware of publication bias because by definition the public can't see it. Working doctors can't see it either but at least they know it is happening (I hope). A while back I was looking at a specific NIH grant that allocated a large amount of money (circa $2 million) and was marked as completed in 2011. No papers were published and moreover no raw data was transmitted back to NIH. How much do you want to bet that was a negative trial? The thing they were studying was already on shaky ground as far as evidence is concerned. Color me cynical.
The PI is very established and working for a huge research university so please don't tell me he couldn't find a publisher. So I agree doctors aren't hiding a cure for cancer but they are definitely hiding data.
I suppose that’s possible. NSABP 51 was presented at the San Antonio breast conference almost three years ago and only recently published. Sometimes processing and publishing the large studies just takes time.
It’s also a bit ironic that you’re accusing doctors of hiding things while posting under a pseudonym. Doctors and researchers may make mistakes or misinterpret data, but they do it under their real names.
Here is some non-anonymous info on publication bias by Cochrane (ie real EBM experts unlike myself).
"Trials with positive findings are published more often, and more quickly, than trials with negative findings."
"Completed research is frequently left unpublished (Dickersin 1990). It has been suggested that in the case of research conducted on humans, failure to publish represents scientific misconduct, since individuals who consent to participate in research, and agencies that provide funding support for these investigations, do so with the understanding that the work will make a contribution to knowledge (Chalmers 1990). Clearly, knowledge that is not disseminated is not making a contribution."
Hopewell S, Loudon K, Clarke MJ, Oxman AD, Dickersin K. Publication bias in clinical trials due to statistical significance or direction of trial results. Cochrane Database Syst Rev. 2009 Jan 21;2009(1):MR000006. doi: 10.1002/14651858.MR000006.pub3. PMID: 19160345; PMCID: PMC8276556.
You made specific accusations about a specific PI, a specific grant and a specific reason for not publishing. As well as "hiding" data. A Cochrane analysis from almost 2 decades ago does not support your conclusions about that particular situation. I don't know why that researcher didn't publish but my personal experience does not reflect your cynicism. It's easy to be cynical. It's harder to hold on to hope.
I think our views on why patients don't trust doctors are not aligned. You see it through a lens of misinformation. I see it as failures within medicine itself. I tried to state my case with references to a specific example that affects me as well as referencing a study by Cochrane. I'm sorry that didn't satisfy you. We will have to agree to disagree.