[Edna]

Medical research not always what it should be

by Edna on Sun Nov 01, 2015 6:52 am

This is a quote from an article in the the Observer / Guardian newspaper today:

Earlier this year, the editor of the Lancet, Richard Horton, wrote that possibly half of the published medical literature may simply be untrue and that science had “taken a turn towards darkness”.

Although the example relates to heart disease, it could relate to any serious disease. If so much of the science that is published may be untrue we need clinicians and patients together to be more critical of research findings / papers. But how can we be critical of misinformation / bias if we do not know when we are exposed to it in treatments given?

.

[Grizlump]

Re: Medical research not always what it should be

by Grizlump on Sun Nov 01, 2015 8:51 am

Of all the people I have known in my lifetime, it seemed to me that the smartest ones asked the most questions. What is any science if not asking questions?

A large number of self acclaimed medical "professionals" and a huge segment of the general population suffer from the "Homer Simpson syndrome". Quick!!, say something before they think you're stupid.

The stuff you don't know will cause you some problems, the stuff you know and are wrong about can kill you.

Charlie (grouch German)

[JPC]

Re: Medical research not always what it should be

by JPC on Sun Nov 01, 2015 9:34 am

Good morning, Edna:

I thought for this post I would jump in and express the contrary opinion. I agree entirely with the title of the thread; research is not always what it should be ideally. Not all research is productive and results in improvements. Some research is contradictory. In many cases there are large companies involved, driven by the "profit" motive. I have no background in bio sciences, but I myself alone can find a couple of studies where the hypothesis and/or the statistics make no sense. Readers, medical professionals, patients, and stake-holders should always read into the literature critically and skeptically.

But over half is "UNTRUE"? That would mean that over 50% of the doctors and researchers or either ignoramuses and liars? In my opinion, I don't think so.

In the US, for clinical trials on people, there are strict rules and oversight. If you are playing in that game, you have to have a considerable level of experience and knowledge just to navigate the process. Phase I clinical trials in theory are not even designed to measure efficacy, they need to be designed to establish that the regimen can be safely administered. They do look at efficacy as a secondary indicator, but typically the populations are so small (25 to 50) that you cannot reliably establish those stats with reliability. The drug has to march through the three phases. That typically will take more than 5 years. Many, many drugs are knocked out along the way.

You could say that for a new drug, that it did not make it past a certain stage, that the research was "untrue", however, I would not think that would be a good application of the English language (or any other language for that matter). Like it or not, money is involved. Period. It needs to be funded, and in the US, at this stage, it's private funding, and I for one hope it always stays that way, because it would only be worse for the government to get involved in that end.

I would most likely agree with many of the individual deficiencies and negative observations that you could come up with, with respect to improving the process and individual cases of bad actors or bad results. Overall, however, I think that the research community in the US and in the world are doing a very valuable service to the multiple myeloma community, and a good and valid source of hope for the future for present patients and future patients. Sincerely, best of luck to you and the issues that you are dealing with, Edna.

And for Charlie, I don't get your point, but it was pretty entertaining, like watching a mini-episode of the Simpsons, itself. Regards,

[Edna]

Re: Medical research not always what it should be

by Edna on Sun Nov 01, 2015 4:11 pm

Hello Grizlump and JPC

The ideal that science once aspired to is not the world of science and scientists today. So yes very bright people not only ask questions they know when their studies yield more questions than answers. As a one time bio-medical scientific researcher I am much more critical of published research and ask more questions than most.

When the editor of the Lancet (a well respected medical publication) makes a statement which beings into question the content of much published medical research I do not discard this voice. Others doctors who write about evidence based medicine are also calling for all clinical trial data to be made fully available to patients and doctors. ~If pharma and research institutions have nothing to hide they should let others analyse their data.

What can get published may be a selective picture taken from the results / data. Publishing information which may be negative or unfavourable in a world where drugs can generate money for big pharma and help careers is not encouraged in science. That is why scientists often invite the media to generate a headline even when the research is in its infancy and the data does not exist to support the promotion of a treatment. As a trained scientist I had relatives taking information from media stories like this as hard fact. I see this as dangerous.

Equally when patients point to a single publication to support a treatment approach it worries me. Evidence is not based on a single publication but on all relevant publications placed in a hierarchy of quality and strength to determine which findings are best supported and replicated. I find getting this kind of information for treatment of myeloma impossible at present. But I do know that on the whole myeloma is treated with more effective ongoing supportive care available now to improve life expectancy for many more. Clinical trials help develop the picture, but we need full details from these to make our own assessments too of the results..

[mikeb]

Re: Medical research not always what it should be

by mikeb on Mon Nov 02, 2015 3:19 pm

Thanks, Edna, for starting this thread. You've raised important concerns.

Through my academic training I was raised to have a deep faith in the scientific process. And I still do have that faith, despite problems such as those described in the article you cited. No doubt there are bad actors who publish fraudulent results, poor researchers who conduct improperly designed experiments without the right controls, researchers who misinterpret data due to a poor understanding of which statistical tests should be used, money from corporations driving which research is conducted, and on and on. But in the end, I am optimistic that "truth will out."

It is a slow march, with many small steps forward toward "truth," but also some backward or sideways steps, unfortunately.

This commentary from Physics Today, in response to Richard Horton's comments, does a much better job of expressing how I think about the scientific process than I can. (http://scitation.aip.org/content/aip/magazine/physicstoday/news/10.1063/PT.5.8119).

HOWEVER, what I've said applies to the long-term process of eventually discovering "truth." We as patients and our doctors don't deal with the long-term. We have to deal with the now. With the imperfect and incomplete information that is available today. This time next year or five years from now or ten years, there will be new information that, I trust, will be closer to the "truth" about multiple myeloma and how to best treat it.

But that future information can't help us today. We, and our doctors, need to make decisions based on the data available today, even if it is incomplete and imperfect. That's one reason why I think it's so important to be treated by a myeloma specialist - that person should have a more complete understanding of the current multiple myeloma research literature than other oncologists who must deal with a wider range of cancers.

And it's why I think it is important for us patients and caregivers to educate ourselves about multiple myeloma. So we can help our doctors in the treatment decision process. As part of that, Edna is right about the need to look critically at the research.

Finally, I support efforts calling for the results of all clinical trials to be made publicly available. As a scientist and as a patient in a clinical trial, I want the data generated about me to be available to anyone that it might help.

Mike

[Edna]

Re: Medical research not always what it should be

by Edna on Mon Nov 02, 2015 5:03 pm

Hello MikeB

Like you I started a scientific career with optimism and deep faith in the scientific process. In fact it is not the process that is a problem. I learnt over time that scientists come in all shapes and sizes and publications are not all equal in terms of value / reproducibility.

With funding of much research being not entirely independent the path to truth can be hard to navigate. Scientists of today are not of independent means, as once long ago many were, or had supporters of means. Today salaries and careers and publications to promote these matter. A scientist who would seek only to do research not funded by big pharma is rare.

I do not always feel that the information I read gives me a clear idea of the best treatment approach, but because of my education and training I can take into account relevant factors and argue with doctors, which I do. I realise myeloma is both complex, challenging and unpredictable to treat. With so many different cancers all with their own challenges myeloma has a difficult time when it is not a common cancer. I read now the costs of treating it in Pubmed publications,

Doctors in the UK are limited, (more so possibly than those in the US), with the treatments they can give aside from clinical trials. But the outcomes from our treatments are clearly not so very different as life expectancy stats for myeloma are similar. What does that convey?

[Ian]

Re: Medical research not always what it should be

by Ian on Mon Nov 02, 2015 5:47 pm

Edna,

Please stop repeating the fiction that cancer survival in the UK is comparable to what it is elsewhere in the developing world, including the States.

International comparisons of cancer survival are always fraught with difficulty. However, if there is one thing researchers involved with this topic agree on, it is that cancer survival in the UK lags considerably compared to most of the western world.

I would think that you would be aware of this because studies about the subject have been prominent in the British press over the past month, not to mention the past year and the past couple decades. See, for example, from this year,

"UK cancer survival worst in western Europe" (Telegraph)
http://www.telegraph.co.uk/news/health/news/11891554/UK-cancer-survival-worst-in-western-Europe.html

"UK cancer survival rates trail 10 years behind other European countries" (Guardian)
http://www.theguardian.com/society/2015/mar/24/uk-cancer-survival-rates-trail-10-years-behind-those-in-european-countries

and from 8 years ago

"UK 'lagging' on cancer survival" (BBC)
http://news.bbc.co.uk/2/hi/health/6955545.stm

Also, for an attempt at an apples-to-apples comparison of multiple myeloma survival between the U.S. and the UK, see

https://myelomabeacon.org/resources/mtgs/ash2013/abs/2925/

In the above study, the authors found that 5-year relative survival of multiple myeloma patients diagnosed at the age of 65 to 74 was 47.2% in the States versus 29% in Britain. Similar disparities exist for the other age groups the authors investigated (see the table in the abstract).

Government authorities and charities in the UK attempt to make myeloma survival statistics for the UK look better than they really are by using methods that more heavily weight estimates (and I emphasize "estimates") of myeloma survival in recent periods. I know because I have looked VERY closely at these statistics for the UK and for other countries. But when you use similar survival estimation methods for the UK and other countries, as the above studies did, the truth comes out about cancer "survival" in the UK.

Cheers

[Edna]

Re: Medical research not always what it should be

by Edna on Mon Nov 02, 2015 6:50 pm

Ian I wholly agree that cancer survival statistics in the UK lag behind others in the wealthier countries, this is deemed because of the inability of our general physicians/ doctors to pick up cancers early enough. So I was not suggesting that cancer survival in England was equal to elsewhere.

Testing for cancer in younger people is not usually undertaken in the UK unless symptoms are obviously pointing to possible cancer. My general practitioner surgery sees barely 1-2 cases of myeloma a year so are unlikely to think anyone has it let alone screen for it. Litigation of medical failings is still uncommon here.

You are quoting old Beacon information. The latest England statistics came out late 2014, included myeloma, by the Office of National Statistics:

.http://www.ons.gov.uk/ons/rel/cancer-unit/cancer-survival-in-england--adults-diagnosed/2008-to-2012--followed-up-to-2013/stb-cancer-survival.html#tab-Results-for-patients-diagnosed-in-2008–2012

The report also acknowledges poorer cancer survival rates in England.

With the cost based restrictions on drugs to treat myeloma now possibly coming into force we are likely to see survival rates for myeloma reverse downwards. I do not pedal myths of any kind, I also live on facts not hope.

Regards

Edna

[Rneb]

Re: Medical research not always what it should be

by Rneb on Mon Nov 02, 2015 8:43 pm

Recently, a large chunk of US psychological "research datum " was invalidated, as the researchers openly admitted that they: failed, fudged, flawed, faked, fonied up, and foiled, the data and the results of tests / experiments -- and had done so for many years -- as they were driven by "expected outcomes".

Gee, Where is Dr Meehl when you need him? " Why I Do Not Attend Case Conferences " is still required reading. Meehl, P.E. (1973). Psychodiagnosis: Selected papers. Minneapolis (MN): University of Minnesota Press, p. 225-302.

Perhaps Edna's point is that something similar is being posited by this UK scientist?

I think most true scientists are honest ... especially those that appear on late night, cable TV, selling whatever. (LOL)

Good Luck.

Mike: Nice touch on clinical trials. I agree. However, HIPAA prevents much of the clinical trials data to be "scrubbed" to remove any possible identifying patient criteria. It therefore cannot be disclosed that you actually prefer butter brickle ice cream, as to vanilla!

[Ian]

Re: Medical research not always what it should be

by Ian on Tue Nov 03, 2015 6:58 am

Edna,

Which position are you taking? Is multiple myeloma survival in the UK similar to what it is in other countries, or is it different?

You wrote earlier in this thread that myeloma survival in the UK is similar to other countries, including the U.S.

Doctors in the UK are limited, (more so possibly than those in the US), with the treatments they can give aside from clinical trials. But the outcomes from our treatments are clearly not so very different as life expectancy stats for myeloma are similar.

You have said the same thing other times here in the forum, for example:

The thing that I feel is missed is that looking at life expectancy data in USA and UK for myeloma for example it is similar and has been improving over the decades in both countries.

Now, however, you say

I wholly agree that cancer survival statistics in the UK lag behind others in the wealthier countries... So I was not suggesting that cancer survival in England was equal to elsewhere.

You are welcome to change your mind on an issue. But if you do, please at least be honest and admit it.

As for the 2014 statistics for England that you cite, I am familiar with them, and they are exactly the kind of estimates I warned about in my earlier posting. Note that they include statistics for 5-year survival for people diagnosed between 2008 and 2012. You cannot know today in 2015 what the 5-year survival will be for patients diagnosed in 2012. You can ESTIMATE it, but you can't measure its ACTUAL value.

Many governments use these sorts of estimates because cancer survival rates generally are going up over time. So estimates generated from recent data are typically higher than what you would get if you looked at actual rates calculated (by necessity) using older data.

There is also a lot of hocus pocus that can go into the creation of estimates based on recent data. It is therefore difficult to know for certain how comparable such estimates are when you're using them to do do comparisons across countries.

That's why it's usually best to rely on cross-country comparisons created by researchers using the exact same methodology to generate comparable estimates. It is those sorts of studies that I cited in my earlier posting.

The English study you cite estimates that, for UK multiple myeloma patients diagnosed between 2008 and 2012, the 5-year relative survival will be 46.7% for men and 46.2% for women, or roughly 46.5% for men and women combined.

This would be a significant change in English myeloma survival and, if it turns out to be correct, could result in a noticeable narrowing of the UK-US myeloma survival gap. But keep in mind that this gap has been quite large for the last decade or two. Here are ACTUAL (not estimated) 5-year multiple myeloma relative survival rates for the UK and US for select years in the past:

Year UK US Gap
1990-1991 22% 30% 8%
2000-2001 28% 35% 7%
2005-2006 36% 46% 10%

UK data: http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/myeloma/survival#heading-Two
US data: "Fast Stats" section of the http://seer.cancer.gov/ website

Maybe the UK-US gap will have narrowed once ACTUAL data for 2008-2012 become available. To be honest, I think it probably will narrow somewhat -- perhaps even more than "somewhat". I also think, however, that this narrowing will be an artifact of the focus on 5-year survival rates, at a time when median myeloma survival in many countries is approaching 5-10 years, versus the 3-5 years it was 10-20 years ago.

Cheers