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Thread: The best tool for finding and understanding research on Rosacea!

  1. #1
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    Default The best tool for finding and understanding research on Rosacea!

    Hey All,

    A week ago I posted in the stickied thread about getting all the journal articles in one place. I mentioned that I was working on a tool that could do this, and I'd love to have you guys give us some feedback on it!

    Well, the time has come to flip the switch!

    I want the rosacea community to be some of the first users, as you guys are really awesome, but lacking a true solution to your problem. Hopefully we can help some of you, and in return, you can give us some awesome feedback about it.

    What is Truthly?
    Truthly is a tool to aggregate health research. We are collecting health research on rosacea, and condensing it in a simple, easy to use application, that allows you to understand, find, and follow.

    Sounds awesome right!? How do you use it?

    1. Go to: http://www.truthlyapp.com/popular?categories=rosacea
    2. You're already filtering by rosacea.
    3. On the right, you can filter even further, just click on tag, like "topical" or "diet"
    4. Click on the gray star to favorite a piece of research. This will get saved to your account, so you can reference it later!
    5. Click on the text to read the abstract, and comment on a piece of research!

    This thread will be for questions/comments/feedback from you guys on what you think of what we've done so far. We've put a lot of love into this, and we really think it should help people get a good picture of rosacea research. If you have anything you'd like us to know, post it here!

    Best,
    Alex

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    Nice! Seems like a good resource.

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    Senior Member Brady Barrows's Avatar
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    Alex,

    I found the article here about Demodex:

    http://www.truthlyapp.com/truths/151

    Apparently you are the author of the post?

    I registered with Truthly. I tried to comment and it requires a different log in. What's with that? Why can't the Truthly registration work for comments? What is the point of registering two different times? Weird.

    I finally figured out to find the article on PubMed you click on the title. Nice feature.

    Also, another question: I see your email address is posted when you submitted the article. Why does your email address have to be posted?
    Last edited by Brady Barrows; 1st April 2014 at 05:28 PM.
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    Quote Originally Posted by Brady Barrows View Post
    Alex,

    I found the article here about Demodex:

    http://www.truthlyapp.com/truths/151

    Apparently you are the author of the post?

    I registered with Truthly. I tried to comment and it requires a different log in. What's with that? Why can't the Truthly registration work for comments? What is the point of registering two different times? Weird.

    I finally figured out to find the article on PubMed you click on the title. Nice feature.

    Also, another question: I see your email address is posted when you submitted the article. Why does your email address have to be posted?
    Hey Brady,

    Thanks for checking out the site and for the feedback!

    I'm not the author of the Demodex article, I'm just the poster. The authors are listed on the pub med page.

    We will make it easier to recognize that the title goes to pub med!

    As for the comments, they are a plug and play option. Building our own comment system would be an inordinate amount of work right now =\ very sorry for the iconvience of having to log in twice, but disqus is widely used, and you can use your login across the web! We will look for a better solution!

    Currently we have the email visible because we're not using usernames, but it's important to be able to track users across posts for reputation and to see if they're being spammy. Is that a deal breaker? We can remove it at this point until we have user names.

    Remember, we just made this, so it's very raw hopefully you guys get a lot out of it!

    Thanks

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    Quote Originally Posted by sundancekid View Post
    Nice! Seems like a good resource.
    Thanks Sundancekid!

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    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by AlsoColor View Post
    Hey Brady,

    Thanks for checking out the site and for the feedback!

    I'm not the author of the Demodex article, I'm just the poster. The authors are listed on the pub med page.

    We will make it easier to recognize that the title goes to pub med!

    As for the comments, they are a plug and play option. Building our own comment system would be an inordinate amount of work right now =\ very sorry for the iconvience of having to log in twice, but disqus is widely used, and you can use your login across the web! We will look for a better solution!

    Currently we have the email visible because we're not using usernames, but it's important to be able to track users across posts for reputation and to see if they're being spammy. Is that a deal breaker? We can remove it at this point until we have user names.

    Remember, we just made this, so it's very raw hopefully you guys get a lot out of it!

    Thanks
    Hi Alex,
    Just curious, do you have rosacea? I have been in rosacea online community since 1998 and have some experience with this. First off, most won't post if their email address is exposed. They want anonymity using fake display names, just like this forum. I would venture you might get a couple of brave souls to allow you display their email address. I did find three demodex articles I wasn't aware of and added this to my comprehensive list here. I think what you have has some merit. But it obviously depends if it becomes popular with rosacea sufferers and they actually post articles in a category and actually put the correct tags as you have done. The submission form for a 'truth' is simple, which I like, but it doesn't have a tags field. So how are the tags added? You are obviously going to expand the categories to other health problems, correct? Are you going to have advertisements in the final version?
    Brady Barrows
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    Quote Originally Posted by Brady Barrows View Post
    Hi Alex,
    Just curious, do you have rosacea? I have been in rosacea online community since 1998 and have some experience with this. First off, most won't post if their email address is exposed. They want anonymity using fake display names, just like this forum. I would venture you might get a couple of brave souls to allow you display their email address. I did find three demodex articles I wasn't aware of and added this to my comprehensive list here. I think what you have has some merit. But it obviously depends if it becomes popular with rosacea sufferers and they actually post articles in a category and actually put the correct tags as you have done. The submission form for a 'truth' is simple, which I like, but it doesn't have a tags field. So how are the tags added? You are obviously going to expand the categories to other health problems, correct? Are you going to have advertisements in the final version?
    I don't personally have rosacea, though I do have persistent seborreheic dermatatis around my nose which i realized through this forum actually. Also, my brother has severe papulopustular rosacea, which is what gave me the idea for rosacea in the first place!

    Thanks for the comprehensive list! We'll add the ones we haven't covered from there. That's a great tool, but we think it's important to be able to filter by specific variables, and to help the user understand the research.

    We actually are moving away from allowing other users to post articles, and restricting it to just our content team, who is highly experienced at reading (and preforming) research. The submission form does have a tags field, at least I hope it's showing up for you!

    we'll think some more about anonymity, we're only two people right now, so changes are hard.

    As for the future, yes, we want to expand to other health problems, and to nutrition and fitness. We believe theres a gap between the knowledge, and the people who need it. We're helping to bridge that gap.

    No, there will not be advertisements on the subsequent versions

  8. #8
    Senior Member Brady Barrows's Avatar
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    Alex,

    If you enter all those demodex articles that would be a massive task. I have been working on the page for years. I agree that having it in a searchable database sorted by category and tags is far superior for researching. You might want to read this article I wrote about the medical digital revolution. The RRDi is on the forefront of having the collaboration tools to do this. Corporate members receive their own domain accounts with 30 gigs of email and drive storage, and other tools to collaborate with fellow members.
    Brady Barrows
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    Senior Member johnabetts's Avatar
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    Regarding publishing email addresses in your facility, Alex - VERY very unwise. The seedier side of the web employs bots specifically to scour the Internet, including and especially forums, for email addresses which they then bombard with any number of unwanted and undesirable messages.

    I have a business email address which receives thousands of junk emails every day purely from me having to publish the address online for business purposes. Fortunately I have invested in a filter program to sort out most of them.

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    Quote Originally Posted by Brady Barrows View Post
    Alex,

    If you enter all those demodex articles that would be a massive task. I have been working on the page for years. I agree that having it in a searchable database sorted by category and tags is far superior for researching. You might want to read this article I wrote about the medical digital revolution. The RRDi is on the forefront of having the collaboration tools to do this. Corporate members receive their own domain accounts with 30 gigs of email and drive storage, and other tools to collaborate with fellow members.
    Brady,

    We're well on our way to adding those articles, your resource is great. Hopefully with our sorting tools, it will be even easier to filter through that research!

    Also, as per your suggestion, we've enabled guest commenting! Now you can comment on any piece of research without signing up for an account. It would mean a lot if you guys could start a discussion over there

    Johna,

    I will work on removing the feature as soon as I can. Thanks for the feedback, it definitely seems to be a big deal.

    -Alex

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