Health Literacy Depends on Reliable Information
Finding reliable healthcare information on the Internet can be a real challenge. Much of the information I read online is oversimplified. On occasion, this information can be misleading or completely inaccurate.
Creating quality patient education materials takes a lot of time, and can be costly. This is likely why WebMD and many other websites embed advertising into their patient education materials.
Creating Credible Resources for Patient Education
Studies have shown that, following an office visit, patients have difficulty understanding or recalling information discussed with their physician. For these reasons, I became interested in creating quality, advertising free, educational materials for my patients to help supplement the discussions taking place in my office. My goal was to create videos and blog posts on common urological conditions, and then embed within them links to additional Internet-based resources.
Preserving the Integrity of Links on the Web
Creating the video and blog posts for these resources turned out to be relatively straightforward. Surprisingly, what turned out to be most difficult was managing the external links. Frankly, I was shocked to find out that an article I had read one day, and wanted to embed into my materials, could turn out to contain completely different content on the following day. I became increasing worried that this could result in unintended confusion for patients reading my materials with links to external resources.
How could I make sure the digital information the patient linked to, was the same information I viewed, and shared with the patient, originally?
When Website Content Changes
Mistakes can happen inadvertently, updates to pages can be made, and even entire web pages can be removed leading to dead links (404 page errors). Many times when websites are redesigned, precious content is lost due to dead links.
Here is a recent example of a small change in an article that might easily be missed – the difference between “ileostomy” (May 25th article) vs. “urostomy” (May 28th update): Dr. Salisz Article – see #1 vs. #2 (par. 13) .
I discovered, with respect to links, the strength of the internet – its fluidity – could also be its greatest weakness. I needed to find a way to get some control over the Internet.
Discovering a Disruptive Technology for Bookmarking and Linking
I started looking for ways to ensure the links I was embedding in my patient educational materials weren’t changing without my knowledge. What I found was an innovative tool, currently in Beta version, called Permamarks.
Permamarks is an application that allows the user to archive an article on the Internet with a permanent link and timestamp.
Once an article is Permamarked, it can’t be changed.
The application allows users to create a shortened, customized URL for their Permamark link. In addition, the tool allows users to organize individual Permamarks into lists. These lists can be can be quite useful as permanent resources in blog posts.
For my purposes – creating custom patient education materials – Permamarks turned out to be the final piece of the puzzle. Now I have the tools to create a video (You Tube or Clear.MD) about a specific topic in urology, add in text (WordPress), and then embed Permamarked links containing information that I have personally curated.
The Future of the Internet
I suspect that applications for Permamarks will extend far beyond medicine. I can envision uses for this tool in government, law, education, or for anyone researching how a specific topic on the Internet evolves over time.
I recently read that 22-year old Permamarks developer Matisse VerDuyn @MatisseVerDuyn submitted an application with business accelerator Healthbox @Health_Box in Jacksonville to grow this tool. I believe the ability to archive digital content is an important part of the future of the Internet, and sharing knowledge. It will be interesting to see, over time, if others find Permamarks to be their go to tool for archiving and linking as well.
Interesting article Brian. I’ve just set up a website and am trying to do the same…..have come across these broken links. I’d also be intertested on your thoughts about the level of writing for the content…trying to keep it reasonably ‘scientific’, but I am aware of the need for simplicity.
Thank you for your thoughtful comments. The advice that I keep getting from our local experts is to prepare healthcare literacy materials at about a fifth grade reading level.
I believe this approach, however, is overly simplistic. We have a virtual war chest of new tools that we can use to help educate our patients. People learn differently. Some learn by reading, others by listening, still others by watching video. Through experimentation, I am trying to create something for everyone.
Most of my materials, however, contain links to outside resources. I like the way Permamarks keep the outside materials constant. Basically, the Permamarks allow you to “set it and forget it” until you have time to update the materials again in the future.
Appreciate your thoughts on the topic, Nick. Curious to see how your own materials turn out. Send me some examples when you get a chance.
Thanks Brian….I have asked ‘my man’ (web designer) about permalinks, and his reply is below FYI
“Permamarks looks very interesting. It would remove the problem of
content changing and/or moving.
One small issue that I could see would be you are still relying on a
On the small chance that Permamarks ceased, you would lose all of your
links in one go.
Second issue, these projects tend to require high bandwidth and high
levels of data storage.
It seems their business model (not yet implemented) is to place
advertisements on the pages you will be linking to.
I don’t know how comfortable you would be with this, as you would have
no control over who/what was advertised.”
Thought this might be of interest….have you had similar experience?
Re: my material….if you get a moment have a look at http://www.nickbrookurology.com nder the ‘For Patients’ tab. I have been aiming for higher than 5th grade.
All the best
Great Comments and Questions. I am going to defer business model questions to Permamarks Developer Matisse VerDuyn. I anticipate he will reply to your questions as soon as he gets back from the Thiel Fellowship Under 20 Summit.
I had an opportunity to take a look at your website tonight. First, it looks great on mobile (iPhone). Second, it has a very simple layout. I am a big fan of keeping it simple.
Finally, and most important, I Love the fact that you have created educational materials for your referring physicians.
Right now I’m asking myself “Why didn’t I think of that?”
We have spent a great deal of time and energy locally trying to improve our referral process but we have spent very little, if any, time educating our referring providers.
I really appreciate you sharing what you are doing on your website with me.
With respect to Permamarks, I am looking forward to watching it evolve. Urologists tend to be early adaptors of new technology. We have an opportunity, as some of the first ones to use Permamarks, to influence it’s direction by providing Matisse feedback and suggestions.
With respect to Health Literacy, I am not aware of any other tool or product that currently offers this type of control over external content (links).
Thank you again for your thoughts and comments.
Thank you for your feedback! I’ve developed Permamarks to be a better bookmarking solution for users who are already accustomed to trusting third parties with handling their links, such as bit.ly.
We wanted to address the possibility of having advertising in the future which would be appropriately matched to the content shared. Keep in mind that you don’t have control over the advertisements on sites you link to. The difference is that Permamarks gives you control over the integrity of the content you share; a guarantee you don’t have when you link to other sites (whose content can be edited or removed).
As we are still in beta testing, we are open to suggestions for features for the tool. I invite you to sign up, and hope you enjoy using Permamarks!
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Thank you for this fantastic post! I am honored to be included, and glad you see the value of preserving the integrity of content with Permamarks.
I appreciate all of your suggestions as a Beta tester, and look forward to more ideas from you and your colleagues in healthcare!
Brian…thanks for taking the time to have a look….and really pleased you got some benefit form it. I hope the GP info has been pitched at the right level….in terms of ‘not too simple’. A lot of topics need to be added, but i tried to think of the simple things that bug them regularly, rather than topics that particularly interest me, eg quick thoughts on how to deal with catheter problems. Its easy to write about partial nephrectomy etc, but not sure they really care too much about that.
I plan to take it out to a few of them and run it by them for feedback.
The site has only been up for about a month. I have found google analytics quite interesting, and learning about the algorithms taht google crawlers use to rate sites. New content, links to (rather than from) and age of site seem to be paramount to a high profile for SEO. At the end of the day, I suppose its not the profile of the site that matters, but its utility for patients and GPs.
Its been a fascinating jounrey (just beginning) to learn about all this stuff, and I am very luck to have a great guy working on the coding aspect of the site.
BTW i really like your video discussions, and would like to do something similar.
Hope to catch up sometime…I am planning SUO later in the year, and will be at the Melbourne CaP conference in Aug.
Many thanks for taking the time to answer those queries…..your model is a great idea and would solve a lot of problems. My site has only been live for a month, and (although I have an excellent guy doing the coding etc) it is a completely new area to me. Its been fascinating learnign about the structure of things, and I’ll certainly give permalinks a closer look. Do a look at the site….there are a fair number of links out…. http://www.nickbrookurology.com
All the best
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