Who is involved in research?

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JMC

JMC

Joined
Sep 10, 2011
Messages
687
I see from the stats there are over 11,000 members on this site. I imagine there are many passive lurkers who just read and a smaller number of active writers, but that is still a large body of people all with Crohn's disease.

Having that many people come together can be a powerful research tool, is anyone here actively involved in Crohn's research? Has anyone tried to use this forum for data collection that would contribute to academic research? Do other people agree this would be a good idea?
 
Thanks for asking! Personally, I haven't tried and wouldn't try because the use of this particular sample would never get past the Ethics committee for my area of research, and even if I set up an external site that people would be directed to (to start to address those concerns), the resulting paper wouldn't be published in a reputable journal in my field, in part because of the nature of the research questions that I would be likely to ask (among other reasons). Rather than trying to address the many issues that would need addressing, am content to be a happy-go-lucky forum participant and leave my researcher self at the (virtual) door.

Academics working in other areas may see questions that they could reasonably start to address using this sample, however. I speak only for my own research questions in my own field.
 
Interesting question and one that could raise a few issues not the least of them being forum members individual written consent .
Can't seeing it getting by any ethics commitees.
Trysha
 
Well, you could address consent issues by:

1. Using existing information posted on the site rather than asking new questions (it's public info, so you wouldn't need consent).

2. Setting up that external site to handle consent + data collection (some committees accept clicking an "I consent" button in lieu of handwritten consent, although sometimes that sets off my inner alarm bells!).

But issues of possible coercion ("be a good forum member and answer my questions"), selective sample (people who take part in forums are often different from people who do not in some key ways), etc. etc. would remain.
 
Some interesting angles about ethics and consent, these were not things I was thinking about, but then again, maybe that was because I was not thinking about research and research papers in the conventional sense.

What I was thinking of, was something more akin to open source software development or crowd sourcing - a group of people with a common interest coming together to move a problem forward.

I would guess everyone on here shares the objective to feel better or if possible to be cured? Why would people not want to actively participate in that?

Collecting data also does not necessarily need to be as rigid as "answer my questionnaire" there is a huge amount of interesting information just in the discussions, which was why I was wondering whether there was anyone actively involved in Crohn's research reading this as it may be a gold mine for research project ideas!

Take as a simple example, the thread about foods which are safe/not safe to eat during a flare up. I know opinion is divided about diet and the role it can play in controlling Crohn's disease (Prof John Hunter has an interesting book on this.) I cannot see however, why there would any possible ethical issues with collecting that data in a more structured way and presenting some useful analysis that everyone here could benefit from?
 
Now that you have elaborated I can see your points of view more clearly.
However,forum members open up their hearts on other issues and might not like to be quoted.
I do agree with you that there could be a way to utilise certain information but still feel that any members should be asked before utilising anything they may have said in unguarded moments.
The forum is a special place where sufferers come together for support and information from each other and are particularly vulnerable.
Trysha
 
Im in a research project here in New Zealand its on mouth lesion associated with crohn's disease as there is increasing evidence that lesions such as mouth ulcers, or even swelling of the lips might be a mirror of intestinal crohn's disease.

So i had to do a questionnaire on mouth lesions as well as looking at the enviromental and genetic links between oral crohn's disease and intestinal crohn's disease.

And gave 15ml blood for DNA thingy
 
Trysha said:
However,forum members open up their hearts on other issues and might not like to be quoted.
I do agree with you that there could be a way to utilise certain information but still feel that any members should be asked before utilising anything they may have said in unguarded moments.
The forum is a special place where sufferers come together for support and information from each other and are particularly vulnerable.
Click to expand...

I understand that people are vulnerable and need support and information, I am not suggesting anything exploitative, the complete opposite in fact.

I started this thread because of a simple thought that was kicking around in my head - the answer to this problem is within us, the people suffering from the disease. We have something in common which has caused this, what is it? If you collect enough data and analyse it in the right way you will find the answer. Changes in technology over the last two decades have at least made it possible to connect people together and collect a large amount of data, what is stopping us?
 
Becca1991 said:
Im in a research project here in New Zealand its on mouth lesion associated with crohn's disease as there is increasing evidence that lesions such as mouth ulcers, or even swelling of the lips might be a mirror of intestinal crohn's disease.
Click to expand...

What is interesting about that for me, is that my sister, who has not been diagnosed with Crohn's disease, has suffered from severe mouth ulcers for most of her life. I think you could add to that sores in the nose, which I have suffered from as others have on the forum, but I have never seen it mentioned in any of the literature.
 
JMC said:
I cannot see however, why there would any possible ethical issues with collecting that data in a more structured way and presenting some useful analysis that everyone here could benefit from?
Click to expand...

This would get around some issues -- I know that I'd be happy to run some analyses if requested (quantitative only as qualitative takes forever!) -- but I do respectfully suggest that this idea of collecting data and presenting results to the forum is very different from the question about contributions to academic research posed in the first post. :)
 
JMC said:
We have something in common which has caused this, what is it? If you collect enough data and analyse it in the right way you will find the answer.
Click to expand...

Aha, now this is another interesting question. I suspect that we will find that there are multiple triggers that interact in multiple ways to produce IBD. As you know, we can look at health and symptoms as (a) falling along a continuum, or as (b) fitting into a series of discrete categories (i.e., you have Crohn's, you have diabetes, etc.). At present, diagnosis relies on discrete categories. However, the American Psychological Association, for example, is seeking a way to eventually integrate the continuum point of view into diagnosis instead of relying solely on discrete categories (you *can* be a little bit depressed -- it's not that someone is either depressed or not depressed). It could be that other illnesses will also eventually have this better taken into account in diagnosis.

The point? If you take the continuum perspective, then you are particularly likely to be seeking a variety of triggers working together in some interesting set of ways. So if we look at, say, 10'000 CF members and their personal profiles, we may very well find 10'000 distinct stories of the development of Crohn's. More likely we will eventually find a handful of general stories -- these people had an interaction of one major life stressor and four characteristics that put them at risk (family history, for example), and these other people had only 1 risk factor and no identifiable triggers, but that risk factor is something that almost always leads to Crohn's...etc.
 
Hello Entchen,
Don't stop here----you have some very interesting and intriguing angles
 
Entchen said:
This would get around some issues -- I know that I'd be happy to run some analyses if requested (quantitative only as qualitative takes forever!) -- but I do respectfully suggest that this idea of collecting data and presenting results to the forum is very different from the question about contributions to academic research posed in the first post. :)
Click to expand...

My first post was maybe too brief to explain my thinking clearly. I referred to "academic research" which clearly implies certain conditions and restrictions to you which I was not thinking about.

When I said "academic research" what I was actually thinking was "any collection of knowledge and analysis that might make us all better". Maybe naively I believe that is what academic research should be about when it is not...
 
I think if you tried to use data from this forum in academic research, you'd probably find yourself with a sample bias. But it is good for some quick and dirty stats, or finding out what patient life is really like.
 
Entchen said:
Aha, now this is another interesting question. I suspect that we will find that there are multiple triggers that interact in multiple ways to produce IBD. As you know, we can look at health and symptoms as (a) falling along a continuum, or as (b) fitting into a series of discrete categories (i.e., you have Crohn's, you have diabetes, etc.). At present, diagnosis relies on discrete categories. However, the American Psychological Association, for example, is seeking a way to eventually integrate the continuum point of view into diagnosis instead of relying solely on discrete categories (you *can* be a little bit depressed -- it's not that someone is either depressed or not depressed). It could be that other illnesses will also eventually have this better taken into account in diagnosis.

The point? If you take the continuum perspective, then you are particularly likely to be seeking a variety of triggers working together in some interesting set of ways. So if we look at, say, 10'000 CF members and their personal profiles, we may very well find 10'000 distinct stories of the development of Crohn's. More likely we will eventually find a handful of general stories -- these people had an interaction of one major life stressor and four characteristics that put them at risk (family history, for example), and these other people had only 1 risk factor and no identifiable triggers, but that risk factor is something that almost always leads to Crohn's...etc.
Click to expand...


There is a real possibility that this is not a single well defined illness, but a continuum of problems caused by the complex interaction of many factors. That would be the worst scenario, but even if that was the case the problem could be divided into sub-groups and attacked.

Where I take hope, is with the discovery of the underlying cause of diseases like peptic ulcers and Celiac/Coeliac disease.

Relief from peptic ulcers was a multi-million dollar business for the pharmaceutical industry before Dr. Marshall and Dr. Warren discovered the underlying cause was Helicobacter pylori and it could be cured with a simple course of antibiotics.

The identification of the cause of Coeliac disease can be partly attributed to the famine in Holland during the second World War when children with the disease improved markedly living on a diet of potatoes only to become ill again when they started eating bread (wheat/gluten).
 
We could group together and approach researchers if we had an idea of what to study

If there was an area of the disease that people on this forum thought was under-researched we as a group could join together and approach leading researchers and say we have XX number of people with IBD who would like to partipate in a study about X, Y and Z. (I DON'T MEAN everyone on the forum would partipate, only those who are interested in participating would do so).

There was a story recently published in the Wall Street Journal about a group of women who have spontaneous coronary artery disease, a rare mysterious heart condition and who met on a social network like this one and joined together and were able to convince researchers to launch a research program to learn more about SCAD. Go to this link - http://online.wsj.com/article/SB10001424053111903352704576538754057145360.html
Or Google "When Patients Band Together"

Unfortunately I don't have any great ideas about what should be studied that has not already been studied...

I have participated in 2 studies about Crohn's.

The first study is being conducted by Rush University in Illinois and is about whether the eating according to the specific carbohydrate diet improves the health of people with crohn's and specifically whether it changes the bacteria in their guts. I don't follow the specific carbohydrate diet so I served as a control. I'm not sure if this study is still open.

The second study is being conducated by the University of North Carolina (and others) and participants are being recruited through CCFA. That study was a questionnaire asking about my diet, medications, and crohn's activity.
This study is still open. Go to CCFA's website to learn more about participating.
 
Entchen said:
The point? If you take the continuum perspective, then you are particularly likely to be seeking a variety of triggers working together in some interesting set of ways. So if we look at, say, 10'000 CF members and their personal profiles, we may very well find 10'000 distinct stories of the development of Crohn's. More likely we will eventually find a handful of general stories -- these people had an interaction of one major life stressor and four characteristics that put them at risk (family history, for example), and these other people had only 1 risk factor and no identifiable triggers, but that risk factor is something that almost always leads to Crohn's...etc.
Click to expand...

Entchen, you have mirrored my exact thoughts! Another disorder that they have been doing this with is MS -- it may be along a continuum that also includes ALS. I've been going through a lot of the CCFA presentations and with the number of genes now implicated in Crohn's (>75), it seems highly likely that there are several different subdisorders that make up Crohn's. However, the ones the know about are now only defined by phenotype, i.e. Crohn's in very young children, or Crohn's of the upper GI. The other part of the equation, environment, is also interesting. It seems that there are both bacteria and viruses that play a part in the immune reaction. I think this is likely where the "spectrum" or "dimensional" part will come in. You may have a certain genetic predisposition, and a certain intestinal flora and analysis will dictate where you fall and what treatment will be best for you. You know, maybe I'm a little bit of a nerd, but sometimes when I am feeling down about Crohn's I think about how much more we know now that when I was diagnosed 14 years ago and it makes me really hopeful about the future :)

As far as research goes, my experience with the IRB (ethics review board in the US) is that they would approve research collected online as long as it is completely anonymous and involves minimum risk. I've seen it done on a website like surveymonkey, with the informed consent in the first page and then the survey afterwards. However, if we are not going to be publishing our results (not so sure if putting on the internet is considered "publishing") we would not need any approval.

I'm a graduate student in psychology and have an interest in medication adherence and transition from pediatric to adult care, and I was just thinking about what a great resource this site would be. Unfortunately, its more of a side interest and I don't think my mentor would go for it. Would be happy to run some analyses though!
 
Another issue with regard to sampling is that anyone can register for an account on this site. It doesn't matter if you have Crohn's or not. You can also register multiple accounts, and nothing stops a person from lying (I know, right? but some people do lie about being sick because they have some kind of mental disorder or are just attention-seeking).

An informal academic survey could probably be conducted to gain preliminary understanding, but you need to have strong control of your representative samples in order for research be considered valid. I'm speaking purely from a scientific background. This may not be the case in social or psychological based studies.
 
notfullyfathomed said:
As far as research goes, my experience with the IRB (ethics review board in the US) is that they would approve research collected online as long as it is completely anonymous and involves minimum risk. I've seen it done on a website like surveymonkey, with the informed consent in the first page and then the survey afterwards.
Click to expand...

I collected daily diary data for my PhD dissertation with SurveyMonkey! My participants had already taken part in an earlier phase of the study and agreed to move on to the diary phase. I was one of the first at my institution to use SurveyMonkey.

Also, Notfullyf, I'm a bit of a methods geek (to pick up on another point that you made!), so if you ever want to make me Really Happy and have a conversation about, say, multilevel modeling in psych research... :ylol:
 
Carrie630 said:
This may not be the case in social or psychological based studies.
Click to expand...

It's also the case in the social sciences. :) Also, I know some psychologists who would cry if they heard the field referred to as anything but a hardcore science...but alas...
 
heh I didn't mean to imply its not a hard-core science :) I absolutely believe it is, but the processes and some of the thinking is different. My science background is in analytical chemistry and computer science. Analytical chemistry is very grounded in what you can "see" and precisely "measure". I put "see" and "measure" in quotes to try to denote that it's a rather narrow focus. You're working with the mind, and we're just learning how to "see" and "measure" the things you work with in there. You deal with emotions, personalities, stress levels, the incredible complexity it is to be a rational thinking person. How each person reacts to the world and perceives the world is highly personal. How each person sees the world through their eyes is highly personal. We can assume that you and I see the same way, but we may not perceive colors in the same fashion. we may have different eye prescriptions. One of us could have had a stroke at one point in their lives and had it affect some part of the brain that processes visual signals. How we see the world affects everything about us. It's a lot more complicated (to me) than analytical chemistry. We can have extreme control over the environment of our experiment. We can control nearly every element. BUT - we can't control the people, not in the total way we control everything else.

Does that help explain what I meant?
 
Are you talking about objective vs. subjective, quantitative vs. qualitative? I think it's a common misconception in the physical sciences that the social sciences don't use objective/quantitative data, when in fact they do.
 
Oh, Carrie, I'm sorry that it looks like you wondered if I took what you said the wrong way...I didn't! I should have put a "teasing" sign up, or finished my "but alas" statement by saying "but alas they might not be in touch with reality."

Some psychologists are hardcore, let's study the brain and look like chemists, types. Others are not. At all. The general consensus (well, consensus is too strong a word for a group of people who bicker like nobody's bidness) is that psych falls somewhere in between the physical sciences and the social sciences. I personally am not concerned about this debate one bit.:ylol2:
 
I know researchers read this forum because we get contacted by them on occasion asking to either post a survey or to utilize various information. For the record, we will always be extremely protective of members personal information and provide nothing without express permission of that member. And we feel it is vitally important that this site remain as unbiased as possible and advocate for the patient first and foremost. We've already refused some advertising requests because of this.

My hope is one day we can fund some research into areas that members collaboratively agree is important. For example, I think that vitamin and mineral deficiencies and Crohn's Disease don't get anywhere as much focus as they should. Tangentally, I think that people with CD are the ultimate human test subjects for researchers interested in what various vitamin and mineral deficiencies do to humans.
 
I just finished reading this thread and, "thinking with my heart" as I did.
I am no scientist, nor could I dare to keep up with the "mega-brains" that have debated/discussed here about "research and data collection."
You are all so very intelligent :)
However, I must say...I just took a breath of relief as I read David's post at the end.
I just want to say THANK YOU DAVID.
Thank you for always considering "us".
You, and yours, have done an amazing job with this forum and "protecting" our privacy and it is noticed and greatly appreciated.

As for all of you who understand the science and research...THANK YOU TOO !!
It is people like you, who not only suffer from this awful disease, but also try and "understand" it as well.
...I tip my virtual hat to you! :)
 

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