Research and bias

[Dovme]

I was chatting to my haematologist about various studies and research l had read or seen. He raised a issue that l hadn’t really considered that of the growing issue of bias in research and being aware of who is funding what the motivation transparency validation etc You can see this to an extent with the race for potential Covid vaccines I found this article and thought it interesting to share. Made me realize the importance of good communication trust with our doctors, being open minded, sourcing the research and checking things out fully

livescience.com/8365-dark-s...

[socrates_8]

Hey Dovme...

Really important discovery you have come across here...

Whenever I research scientific & Peer-reviewed Papers, after reading the Summaries, I always skip down to the end of the article to the Acknowledgements, and read about who is behind the 'Funding' of the Research...

One often learns that it is indeed another 'Big Pharma' (BP) and that makes taking all of their findings a little harder to swallow as often they are not much more than mere marketing exercises of their own drugs etc.

However, that does not automatically mean that all Research is tainted, just that we need to be aware of the message in each case, in my view...

If there was NO funding there would not be any Research at all... Just one small point to remember is all...

Best wishes & well spotted...

Steve

[hunter5582]

You are 100% correct about researcher bias. It was one of the first things we were taught to look for when I was in graduate school being trained to do research. Researcher bias can play out in both overt and subtle ways. At some level it is always present as researchers are human beings. Overt bias can be seen when research is used to support an outcome desired by a funding source. Or when a researcher is heavily invested a pet theory. Subtle bias can be seen when researcher judgement is involved in gathering and evaluating data. The best designed studies involve what is called a double-blind where the researchers are gathering/evaluating data without knowing which part of the population being studied the data came from. Research also needs to be evaluated both for the validity and the reliability (note those are specific statistical terms, not just the colloquial definitions) of the data. There is a lot to assessing the research we are reading.

I agree that we need docs we can trust. However, I have found that docs also have their viewpoint/bias in how they think about treatment and what the research says. They can be just as prone to focusing on what supports their own theories and disregarding research that is inconsistent with what they believe as anyone else. I will have to add myself to that list of having biases. All any of us can really do is try to be open-minded and willing to learn something new, even if it is different than what we think. I LOVE the docs I have who are open minded, willing to treat me like I have functional intelligence, and take the time to listen and explain. They are worth their weight in gold.

Thank you for posting this. It really is a helpful reminder to all of us who are tracki9ng research and trying to learn how to better manage our MPNs.

[Deefen]

Yes! A big one was the Harvard study that somehow came to the conclusion that coconut oil was bad for you - interestingly the researcher was funded by the seed oil industry that was suffering losses as people were using coconut oil more & more. Definite bias there!

[Mostew]

Thanks . Good article . Let’s hope we get honest report of any Covid vaccine if they find one . !

[beetle]

I just worry about the patient’s ability to unpick the biases that colour/cloud our treatment. It is also true that doctors sometimes get financial reward for promoting one product over another. How is the general public with no medical/scientific/research knowledge supposed to navigate the pitfalls?

Just imagine the financial rewards coming to the first passed the post in the case of Covid vaccine and most of us are in the group that would get initial access to the vaccine. Thus the trials involving MPN patients will more than likely be conducted on us! (It reminds me of the the film “The Constant Gardener”)

It’s a scary world out there because so much of human behaviour is affected by money. The old biblical saying “the love of money is the root of all evil” is too true

As has already been said, there would be no research without financial incentives - as was evident in our “orphan” disease before it was reclassified as a cancer. We have to have some level of trust in the doctors in charge of our care and act on their best advice as well as reading about as much research as we can get our hands on to help us with our decisions. I do find that doctors that I have come across respect a patient who takes ownership of their condition and is prepared to enter into discussion about it and they are usually prepared to reveal their reasoning in suggesting one or another form of treatment

I for one am extremely grateful to those members of our community who point the rest of us in the direction of useful reading so thank you to all who do this

Best wishes, Jan

[Scrollernut]

I had a similar talk with both primary and hematologist doctors along the same lines. Every time I mention my ‘ symptoms’ they always had a ready excuse that they were not likely associated with ET because everything they ‘read’ said ......... I said that’s all I hear is what you read. How about actually TALKING to people who are dealing with MPN on a daily basis and get our intake.. Then we again talked about this forum and how every one had the same symptoms. And it isn’t just a ‘life style’ or age.. the problems are real! Still got no where....just a condensing smile. At least my primary doctor is sending me for some more test just to make sure I don’t have an underlying problem that isn’t associated with MPN. Now that I’ve tested negative again for covid I can finally go back to the cancer clinic for my regular blood work up and appointment. Guess I’ll have the same discussion! While clinical test are certainly valuable I do agree the results are obscured. Just to be fair my hematologist, while telling me what he reads, does seem to take what I say somewhat serious. The last time we spoke before I tested positive for Covid he did say he would talk to other hematologists and get some of their intake. At least he’s talking to people and not just reading.. ‘‘tis frustrating McGee “.

[Eadaoin]

I am also worried about the biases in the NHS Econsult system and how its algorithms shape my request before it reaches the GP. As I understand it, all such systems have biases. Perhaps someone can reassure me.