I want create a website where people answer health surveys.
February 1, 2015 6:52 PM Subscribe
I have a medical condition that is relatively common, but little is known about it. I want to create a website where people with this condition voluntarily answer surveys about their symptoms, diagnosis, and test results.
I want to create awareness of the condition and shine a light on often reported but little recognized symptoms in the hopes that people are eventually diagnosed and treated more easily.
Right now, there are few treatments, little research and much suffering.
What are my privacy, ethics, and legal concerns here. Do I need to find a research investigator and apply to an investigational review board, or can I just collect this information from people and tally it on a website?
Thanks!
I want to create awareness of the condition and shine a light on often reported but little recognized symptoms in the hopes that people are eventually diagnosed and treated more easily.
Right now, there are few treatments, little research and much suffering.
What are my privacy, ethics, and legal concerns here. Do I need to find a research investigator and apply to an investigational review board, or can I just collect this information from people and tally it on a website?
Thanks!
Getting people to answer your survey will be no small task. I do not want to burst your bubble but even if you are really well-connected you are going to have a very hard time getting people to use your website. Especially if you want them to come back multiple times.
Have you looked at Patients Like Me to see if they have your condition listed? They are doing what you want to do but on a huge scale and they have a lot of records and people who use their service.
posted by sockermom at 7:07 PM on February 1, 2015 [10 favorites]
Have you looked at Patients Like Me to see if they have your condition listed? They are doing what you want to do but on a huge scale and they have a lot of records and people who use their service.
posted by sockermom at 7:07 PM on February 1, 2015 [10 favorites]
You might want to consult with a lawyer on this first.
posted by deathpanels at 7:25 PM on February 1, 2015 [1 favorite]
posted by deathpanels at 7:25 PM on February 1, 2015 [1 favorite]
The legal challenges here do not come from your stated goal of tallying these self-responses on a website. You are completely free to do that*. And in a perfect world, that would be enough. The problem lies in actually disseminating this information in a form that will affect practice in the field.
The challenges you're thinking of WILL show up once/if you attract enough attention that some researcher in the field says "ooh, these numbers would actually be really informative about treatment decisions or research directions... can I cite them?" But since your (presumably awesome) stats weren't published as part of a peer-reviewed study, it'll be harder--and they won't get nearly the credit they deserve. (I.e., if a researcher in the field did exactly the study you did, acknowledging the self-selection, and published the results, those results would be viewed as more credible.)
And a sort of secondary publishing (i.e., the researcher says, okay, this data already exists on the Internet... let's write up "Little-recognized symptoms of Syndrome X as reported online by patients") is tricky:
- this would be more legitimate, and likely, if someone were scanning lots of online forums and genuinely coming up with the information, not just helping you re-publish your site, AND
- if you were to re-publish the site, then all the questions that are important for published research come into play: were subjects informed of all of the potential risks of participating in this study, and did they provide documented, informed consent? Even if so (this isn't that hard!), not getting approval ahead of time will be a big roadblock.
It's completely possible this doesn't matter to you, because your goal is to get information out to the (Google-savvy) patients, and that's enough. That will, in fact, affect practice eventually! But if you want the biggest bang for your buck, I would contact several people who work in the field, and basically propose to do this in collaboration with them. Make it very clear that you are prepared to create the website and advertise to the relevant patient population (show evidence of being able to do each of these!), and ask:
- to work together on the exact questions,
- for help with data analysis and presentation (if needed) and
- IRB approval.
* But if it's a condition that stems from having murdered people and not been convicted or something, be really careful. Or don't do that.
posted by cogitron at 7:43 PM on February 1, 2015 [1 favorite]
The challenges you're thinking of WILL show up once/if you attract enough attention that some researcher in the field says "ooh, these numbers would actually be really informative about treatment decisions or research directions... can I cite them?" But since your (presumably awesome) stats weren't published as part of a peer-reviewed study, it'll be harder--and they won't get nearly the credit they deserve. (I.e., if a researcher in the field did exactly the study you did, acknowledging the self-selection, and published the results, those results would be viewed as more credible.)
And a sort of secondary publishing (i.e., the researcher says, okay, this data already exists on the Internet... let's write up "Little-recognized symptoms of Syndrome X as reported online by patients") is tricky:
- this would be more legitimate, and likely, if someone were scanning lots of online forums and genuinely coming up with the information, not just helping you re-publish your site, AND
- if you were to re-publish the site, then all the questions that are important for published research come into play: were subjects informed of all of the potential risks of participating in this study, and did they provide documented, informed consent? Even if so (this isn't that hard!), not getting approval ahead of time will be a big roadblock.
It's completely possible this doesn't matter to you, because your goal is to get information out to the (Google-savvy) patients, and that's enough. That will, in fact, affect practice eventually! But if you want the biggest bang for your buck, I would contact several people who work in the field, and basically propose to do this in collaboration with them. Make it very clear that you are prepared to create the website and advertise to the relevant patient population (show evidence of being able to do each of these!), and ask:
- to work together on the exact questions,
- for help with data analysis and presentation (if needed) and
- IRB approval.
* But if it's a condition that stems from having murdered people and not been convicted or something, be really careful. Or don't do that.
posted by cogitron at 7:43 PM on February 1, 2015 [1 favorite]
Are there any nonprofit research or support organizations that work with this particular type of illness?
Speaking as someone who has a relatively common medical condition that most people haven't heard of, I would hesitate to divulge personal information (such as test results) to a stranger or a one-off website. I would, however, be more likely to share this information with one of the nonprofits associated with my particular condition. Perhaps by joining forces with a related nonprofit, you might benefit from access to current research as well as legal resources.
posted by mochapickle at 8:27 PM on February 1, 2015 [4 favorites]
Speaking as someone who has a relatively common medical condition that most people haven't heard of, I would hesitate to divulge personal information (such as test results) to a stranger or a one-off website. I would, however, be more likely to share this information with one of the nonprofits associated with my particular condition. Perhaps by joining forces with a related nonprofit, you might benefit from access to current research as well as legal resources.
posted by mochapickle at 8:27 PM on February 1, 2015 [4 favorites]
Take a look at the Preeclampsia Foundation website. They do what you are describing *without* collecting sensitive data like test results.
posted by frumiousb at 10:19 PM on February 1, 2015 [1 favorite]
posted by frumiousb at 10:19 PM on February 1, 2015 [1 favorite]
Having a medical condition that has limited effective treatment must suck. The medical community do not always treat people with these conditions well. I'm sorry.
I'm sure you've thought about this a great deal, but your question reads a bit like a jump to 'Solution Mode.'
I want to create awareness of the condition and shine a light on often reported but little recognized symptoms in the hopes that people are eventually diagnosed and treated more easily.
A noble goal.
I want to create a website where people with this condition voluntarily answer surveys about their symptoms, diagnosis, and test results.
This might be a way to move towards your goal, but I don't understand the link.
Are you trying to do research into the condition? Are you trying to generate evidence to present to health care providers? Are you trying to find a treatment? Are you trying to create awareness of the condition? Are you trying to advocate for accommodations for sufferers?
There are people on askmefi who have concrete, practical experience with all these things. Can you help us by clarifying what you want to achieve?
posted by Combat Wombat at 5:34 AM on February 2, 2015
I'm sure you've thought about this a great deal, but your question reads a bit like a jump to 'Solution Mode.'
I want to create awareness of the condition and shine a light on often reported but little recognized symptoms in the hopes that people are eventually diagnosed and treated more easily.
A noble goal.
I want to create a website where people with this condition voluntarily answer surveys about their symptoms, diagnosis, and test results.
This might be a way to move towards your goal, but I don't understand the link.
Are you trying to do research into the condition? Are you trying to generate evidence to present to health care providers? Are you trying to find a treatment? Are you trying to create awareness of the condition? Are you trying to advocate for accommodations for sufferers?
There are people on askmefi who have concrete, practical experience with all these things. Can you help us by clarifying what you want to achieve?
posted by Combat Wombat at 5:34 AM on February 2, 2015
Have you checked out http://www.patientslikeme.com/ ?
posted by rogerrogerwhatsyourrvectorvicto at 11:53 AM on February 2, 2015
posted by rogerrogerwhatsyourrvectorvicto at 11:53 AM on February 2, 2015
Response by poster: The people with this condition are caught in a loop where the medical establishment calls the condition "rare" when it isn't, and therefore does not conduct enough research to establish that it is, in fact, fairly common, and also does not conduct enough research to discover the cause(s) or many effective treatments. Why bother when it is so "rare", after all?
I know half a dozen people outside my family who clearly meet the established criteria and yet remain undiagnosed. This is not rare. It's just bizarrely unknown.
It's a clinical diagnosis, as in, you and I and anyone else can observe the physical signs of this illness and yet diagnosis is reserved for geneticists: rare, rare birds as far as specialists go. Primary care physicians should be first in line for identifying people with this condition, and yet it seems entirely unknown among them.
The situation is sort of like an engine that won't quite turn over. I keep thinking that someone will connect the dots, and for the most part, they don't. I have been waiting for 30 years.
It's like blind men feeling different parts of an elephant and each one giving it a different description.
A lot of symptoms that are commonly reported by people with this condition are simply ignored by researchers and physicians. I want to emphasize the sheer number of people affected and organize what they report about themselves into a form that is hard to continue to ignore.
The recognition of the symptoms themselves will lead to discovering the cause of the illness.
I would also like to identify clusters of symptoms, perhaps within families, that may help subdivide people with the condition.
There is a national organization for this condition, and I would like to work with them. I think the research they support is not as game changing as it could be. The associated online support group has 15,000 people.
posted by Pablito at 5:34 PM on February 2, 2015
I know half a dozen people outside my family who clearly meet the established criteria and yet remain undiagnosed. This is not rare. It's just bizarrely unknown.
It's a clinical diagnosis, as in, you and I and anyone else can observe the physical signs of this illness and yet diagnosis is reserved for geneticists: rare, rare birds as far as specialists go. Primary care physicians should be first in line for identifying people with this condition, and yet it seems entirely unknown among them.
The situation is sort of like an engine that won't quite turn over. I keep thinking that someone will connect the dots, and for the most part, they don't. I have been waiting for 30 years.
It's like blind men feeling different parts of an elephant and each one giving it a different description.
A lot of symptoms that are commonly reported by people with this condition are simply ignored by researchers and physicians. I want to emphasize the sheer number of people affected and organize what they report about themselves into a form that is hard to continue to ignore.
The recognition of the symptoms themselves will lead to discovering the cause of the illness.
I would also like to identify clusters of symptoms, perhaps within families, that may help subdivide people with the condition.
There is a national organization for this condition, and I would like to work with them. I think the research they support is not as game changing as it could be. The associated online support group has 15,000 people.
posted by Pablito at 5:34 PM on February 2, 2015
The associated online support group has 15,000 people.
That's a huge online support group. Huge. Have you contacted moderators of the group? Do you participate there?
One of the best things you can probably do is to get in touch with the national organization and see if there are volunteer opportunities. You may also think about getting in touch with your local university to see if there are researchers in the School of Public Health, the School of Nursing, or the School of Medicine that either research your condition. Even if it is a "rare" condition as defined by the medical establishment, there are still researchers working on it. Even conditions that are not recognized by the medical establishment are being studied by researchers, especially people that work on psychosocial aspects of illness.
The recognition of the symptoms themselves will lead to discovering the cause of the illness.
This is not always the case.
The medical establishment calls the condition "rare" when it isn't, and therefore does not conduct enough research to establish that it is, in fact, fairly common, and also does not conduct enough research to discover the cause(s) or many effective treatments. Why bother when it is so "rare", after all?
Are you saying this based on personal experience, or on what you have read in the peer-reviewed medical literature?
Really, volunteering with the local organization, the online support group, and/or getting your own credentials to do research in this area (e.g. working towards a degree in public health, nursing, medicine, etc. either at the master's level or the doctoral level) will be the best way for you to make headway with your cause.
posted by sockermom at 7:11 PM on February 2, 2015
That's a huge online support group. Huge. Have you contacted moderators of the group? Do you participate there?
One of the best things you can probably do is to get in touch with the national organization and see if there are volunteer opportunities. You may also think about getting in touch with your local university to see if there are researchers in the School of Public Health, the School of Nursing, or the School of Medicine that either research your condition. Even if it is a "rare" condition as defined by the medical establishment, there are still researchers working on it. Even conditions that are not recognized by the medical establishment are being studied by researchers, especially people that work on psychosocial aspects of illness.
The recognition of the symptoms themselves will lead to discovering the cause of the illness.
This is not always the case.
The medical establishment calls the condition "rare" when it isn't, and therefore does not conduct enough research to establish that it is, in fact, fairly common, and also does not conduct enough research to discover the cause(s) or many effective treatments. Why bother when it is so "rare", after all?
Are you saying this based on personal experience, or on what you have read in the peer-reviewed medical literature?
Really, volunteering with the local organization, the online support group, and/or getting your own credentials to do research in this area (e.g. working towards a degree in public health, nursing, medicine, etc. either at the master's level or the doctoral level) will be the best way for you to make headway with your cause.
posted by sockermom at 7:11 PM on February 2, 2015
Response by poster: The medical establishment calls the condition "rare" when it isn't, and therefore does not conduct enough research to establish that it is, in fact, fairly common, and also does not conduct enough research to discover the cause(s) or many effective treatments. Why bother when it is so "rare", after all?
"Are you saying this based on personal experience, or on what you have read in the peer-reviewed medical literature?"
The few researchers that are working on it are the only ones insisting that it isn't rare, besides the patients themselves. The researchers meet with a lot of resistance.
I keep abreast of the peer reviewed medical literature and the research conferences. This is ultra-legit. That's why the situation is so frustrating.
I agree. One of the first things to do is get in touch with the national organization.
posted by Pablito at 5:44 PM on February 3, 2015
"Are you saying this based on personal experience, or on what you have read in the peer-reviewed medical literature?"
The few researchers that are working on it are the only ones insisting that it isn't rare, besides the patients themselves. The researchers meet with a lot of resistance.
I keep abreast of the peer reviewed medical literature and the research conferences. This is ultra-legit. That's why the situation is so frustrating.
I agree. One of the first things to do is get in touch with the national organization.
posted by Pablito at 5:44 PM on February 3, 2015
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If you want to be able to email people, it needs to be 100% double-opt-in, as well.
posted by DarlingBri at 7:04 PM on February 1, 2015 [1 favorite]