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The best tool for finding and understanding research on Rosacea!

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  • 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

  • #2
    Nice! Seems like a good resource.

    Comment


    • #3
      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; 1 April 2014, 05:28 PM.
      Brady Barrows
      Blog - Join the RRDi


      Comment


      • #4
        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

        Comment


        • #5
          Originally posted by sundancekid View Post
          Nice! Seems like a good resource.
          Thanks Sundancekid!

          Comment


          • #6
            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
            Blog - Join the RRDi


            Comment


            • #7
              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

              Comment


              • #8
                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
                Blog - Join the RRDi


                Comment


                • #9
                  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.

                  Comment


                  • #10
                    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

                    Comment


                    • #11
                      Alex,

                      I have registered an account but you will need to have the option to remove my email address from a submission before I ever submit an article.

                      I tried using your guest commenting on one article and await to see how you handle it and if my email address is exposed or not after you approve it.

                      The other option that has been available for everyone is PubMed which also is searchable by keywords/tags. For example, here is a search by the keyword 'rosacea.' 2764 articles resulted.

                      You might explain why Truthly is superior to PubMed since I don't see much of an advantage. For example here is the PubMed search on rosacea demodex. 137 articles resulted. The only advantage I could see Truthly would have is if the same result had more articles than PubMed and that would depend on more work than what PubMed workers are doing with this subject. You are going up against a mighty database. And you are doing this as volunteers? Wish you were volunteering for the RRDi. There simply aren't volunteers like you if you think you can be better than PubMed. You two are rare volunteers.
                      Brady Barrows
                      Blog - Join the RRDi


                      Comment


                      • #12
                        Originally posted by Brady Barrows View Post
                        Alex,

                        I have registered an account but you will need to have the option to remove my email address from a submission before I ever submit an article.

                        I tried using your guest commenting on one article and await to see how you handle it and if my email address is exposed or not after you approve it.

                        The other option that has been available for everyone is PubMed which also is searchable by keywords/tags. For example, here is a search by the keyword 'rosacea.' 2764 articles resulted.

                        You might explain why Truthly is superior to PubMed since I don't see much of an advantage. For example here is the PubMed search on rosacea demodex. 137 articles resulted. The only advantage I could see Truthly would have is if the same result had more articles than PubMed and that would depend on more work than what PubMed workers are doing with this subject. You are going up against a mighty database. And you are doing this as volunteers? Wish you were volunteering for the RRDi. There simply aren't volunteers like you if you think you can be better than PubMed. You two are rare volunteers.
                        Hey Brady!

                        Great questions again. We are actually a for profit company, like reddit, imgur, or most of the social web, but we're not selling products or advertisements. We have yet to figure out our revenue model, and we're seeking investment, but our mission is to connect the research of the world with the people who need it, and like you said, it's very difficult to do that as a non-profit/volunteer.

                        Why are we better than Pubmed? Pub med is ineffective as a discovery platform, and very ineffective at helping consumers understand. If I search rosacea on pub med, I get 2700 articles. We've sorted through most of them, and found that there are less than 200 articles that are valuable to consumers. No consumer is going to go through 100 articles, let alone 2700. Many of the articles are irrelevant, and many focus on highly scientific topics (such as chemistry/cell biology). Many of them are reviews that repeat the same information from other articles, and can have a high level of bias. Many of them are case studies, again, mostly a negative for consumers, who may take the information the wrong way. Many of them aren't even about rosacea at all!

                        All of the information on Truthly is curated, it's all relevant and actionable, and it's all large scale research, and every single piece of research should be able to inform and help a user in some way.

                        Second, as I mentioned, Pub med adds no understanding to the research. Our goal is to make it so consumers can understand the research. Right now, only a small portion of highly motivated people go and read a pub med article, because they're just too complex. That's why we simplify it in terms that a consumer can understand. We're adding more features around that currently, remember, we're brand new. We need time to build and to improve That's why we're in alpha right now!

                        As for the emails, again, we're not too worried about outside user submissions. We really appreciate the feedback and your investment in the platform so far! We'd rather we curate the research, until we can create specifically permissioned accounts.

                        Also, your email will not show when you post a comment

                        Comment


                        • #13
                          Alex,

                          Your statement:

                          That's why we simplify it in terms that a consumer can understand.
                          Does cause me some concern.

                          It is imperative that you give a CORRECT interpretation in your simplification. With some (many) highly scientific items that appear in PubMed and other scientific publications are not amenable to "dumbing down" to suit lay readers without losing a lot, if not all, real meaning. Worse is a wrong understanding leading to false hopes for readers. Patents can be a particular problem as these are written in a legalese jargon (with good reason) and can be very difficult to interpret for their real objectives.

                          I'm not trying to negate your endeavour, just the opposite, but pointing out some of the pitfalls to be aware of.

                          Comment


                          • #14
                            Originally posted by johnabetts View Post
                            Alex,

                            Your statement:



                            Does cause me some concern.

                            It is imperative that you give a CORRECT interpretation in your simplification. With some (many) highly scientific items that appear in PubMed and other scientific publications are not amenable to "dumbing down" to suit lay readers without losing a lot, if not all, real meaning. Worse is a wrong understanding leading to false hopes for readers. Patents can be a particular problem as these are written in a legalese jargon (with good reason) and can be very difficult to interpret for their real objectives.

                            I'm not trying to negate your endeavor, just the opposite, but pointing out some of the pitfalls to be aware of.
                            We understand the concern, and we've gotten it before from many, many people, even prominent researchers at Stanford.

                            If it wasn't a difficult task, everybody would be doing it. But we believe it will have the potential to help millions of people.

                            There's always the potential for error. Doctors make mistakes reading scholarly literature as well. Nobody is perfect. But we can do an excellent job consolidating this research in layman's terms, and using other tools such as visualization, and algorithms, to reduce the risk of misinterpretation.

                            The problem is the scientific community is so scared to recommend anything for fear of a possible lawsuit, that potentially life changing information doesn't get to consumers.

                            Inaction is sometimes more harmful than action. We are empowering consumers, not endangering them.

                            The information is THERE. But consumers can't take advantages of it. Take the SIBO thing for instance. No doctor is going to recommend that. But you have people all over this forum telling each-other to take rifaximin.

                            At least with Truthly, they have a scientifically validated reason to do it, which allows them to make an educated guess. And guess what, if it works, and no more rosacea? WOW. And if it doesn't? Usually, the worst thing that could happen is some stomach pain.

                            Also, keep it mind that many of the terms you are talking about are not important in the long term.

                            The main things that matter are: 1. What was the finding? 2. Is the research good quality? 3. Is it relevant to me? Nobody cares about the effect size, or the effect on fjdlaskfjdslakfjl process in the skin cell. It's all about quality, relevance, and actionability.

                            Sorry for the tirade, but I feel REALLY strongly that people should have access to this information.

                            Comment

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