First of all, I applaud Google's efforts on putting NIH material at the top of the list of returns on my query. That was most helpful and decided to use that content as a baseline against which I could compare other reading material. Also, Google's spelling correction of my original spelling (Cervical Radiculapthathy) was great. Any search tool that doesn't include spelling corrections on complex medical terminology is NOT consumer friendly. My first attempt to type in this term I didn't initially know how to spell produced an excellent result in Google because it spell corrected my mistakes. But that was not true in any of three other medically focused search engines that I tried. The Google results were much better organized than the medical search engines.
I tried Bing with the same query and got nearly similar results with TWO important distinctions. One: Bing didn't include the NIH material. Two: Bing totally failed my ad-hoc spelling correction test. Come on Microsoft, I know you have spelling correction software ... use it.
As soon as I put the words "Blog" after my search criteria, my experience changed. The quality of the material went down greatly. Several blogs included copious Google Ads. I hate sites that abuse Google AdWords with a passion. That was enough to drive me away from any site containing healthcare data. The site creator seems more worried about funding the site than the patient/user experience. The other things that I saw were sites that were "single-treatment" focused. These tended to be mono-focused on how "their product" produced results. I shied away from these as I would a snake-oil salesman but I can see how this stuff is very scary to physicians.
A couple of blogs turned up with the HONcode logo. That means they've made some effort to be visibly authoritative and conform to a particular code of behavior. I did not find any other similar effort expressed in more than one site (nor would I have been able to recognize it). I find myself giving those sites higher marks and it became something I actively looked for. I used the HONcode search engine and found a rather wide variety of opinions on diagnosis and treatment of my particular condition. I was frankly surprised somewhat by the variety there, especially given the general consistency I found within other sites I found with pretty authoritative content.
Most notable in many sites was a complete lack of citations to evidence-based-medicine. The only site that got good marks for that was the NIH site.
A couple of things that I found to be indicative of good content in this brief survey of the web:
- References to Evidence-based-medicine, especially NLM curated citations (e.g., PubMed).
- Content attested by a well known clinical organization.
- Content with a clearly identified last review date.
- Professionally produced graphics and/or video (especially animation). Content like that isn't cheap, and anyone who puts some effort into producing it is at least investing in the content, unlike the sites which used tons of adwords and short bits of text clearly lifted from online references.
- Good indexing. Often a medical term will have several significant variations (herniated disc was an alternate search term I used). People who invest in making content accessible are paying attention.
- Clear signs that the site conformance to a code of ethics (e.g., a link to ethics page, or logo like HONcode).
- Good search technology.
- Single treatment focused -- this drug, that therapy, et cetera, especially if the site is clearly benefiting someone who has a drug or therapy they sell.
- AdWords... Especially at the top of the useful content ... nuf said.
- Clearly copied content.
I looked separately for patient created content (the other side of the social media conversation). A good quick test query for that was "I have diagnosis". That sent me to a number of different message boards that I didn't recognize. Thinking about it a little, it seems obvious that these are pretty much wide open web-sites/message boards that I really would rather avoid. I want to have others have established at least some level of "membership" before I gave them a way to access content I created about me and my disease (this post doesn't count -- if it was a more serious or embarrassing concern, I'd be much more circumspect). So, how would I find a more personally but still social site.
I went to one pretty well-known patient healthcare social site only to discover that it fails to work with my favorite web browser (Chrome) -NOR- with IE behind the corporate firewall. So I had to switch back to the home computer to access using my least favorite browser (I will note that it also worked on my iPad just fine). Using my own equipment is more appropriate, but also raises some interesting policy issues for corporate America. For patients living with chronic health conditions, using employer equipment to access HCSM websites that help them manage their health may be quite worthwhile.
The Chrome failure made me wonder about the tech-savvyness of ePatients. I expect most (but not all) patients using HCSM would be more tech savvy that the prototypical e-mail-using facebook-posting grandmother (that would be my mother here). Hmm, I just equated ePatients with users of HCSM. Is that a fair equation? Probably not. There are surely differences here, which requires more in-depth exploration. Just because all the ePatients I know are also users of social media does not make them the same group. And my mother, while not a techy-genious practically invented the PHR [she just uses Microsoft Word and a lot of paper to carry it around].
My search from that one social site turned up little for my specific condition without joining. It did turn up enough aggregate anonymous data to let me know that I was already much better off than others who had turned to it (simply by reading the treatments used). I didn't fit the typical patient profile (not surprising, considering this was an experiment encouraged by a real life event rather than real life use). I had similar issues with bad search indexes and lack of spelling correction there. They didn't cover Cervicular Radiculopathy in their search index, so I fell back to "herniated disc", which did work. I also tried "herneated disc" and "herniated disk" which failed to turn up anything. The average patient wouldn't have been as persistent as I was, but then again, the average patient probably wouldn't be at that page to begin with.
As a patient, did I find my very brief foray into HCSM valuable? Yes, I did. Several of the blogs referenced therapy options that neither my PCP nor my PT mentioned. I'll be asking about one of those options later this week, since I have some indications based on my PT assessment that it may be helpful. I also discovered some information that about some early symptoms of Carpal Tunnel that my doctor reported to me, but which don't line up with what I've read myself. I'll be asking him about them on my follow up visit next week. I'll report my results with my providers after I follow up. Would I use a patient driven HCSM site? I think it would depend on my condition and needs. Certainly I already find a great deal of support in social media for other activities both professional and personal. I would certainly look for and be happy to find an online community to support my health needs were they much greater than at present. Even now my social network provides a good deal of support.
This was a fairly safe diagnosis to be testing these waters with. There are certainly some easy lessons to be learned in this particular space. I wonder about the convergence between #HCSM and #HealthIT and #CDS and #EBM. Some folks are onto an idea that would readily bring these together, but that idea is just starting to emerge.
My own prognosis is good, and while my current pain makes it difficult to work, treatment seems to be helping. Interestingly enough... typing doesn't aggravate the problem, but writing code or XML does. It has to do with how I need to use my body for the latter task. Writing this blog keeps my hands fairly well in the same place and mostly involves small hand and wrist motions. Coding or writing XML involves mouse + keyboard activity which uses shoulder, arm and neck (to track the mouse across the screen). That is much more difficult for long periods of time.
Already I've redesigned my workplace a bit, getting a larger monitor and raising it up on a swing arm to counteract bad posture brought on by my aging eyes (and I also made my long overdue appointment for an eye exam). I've readjusted my chair to ensure a more upright posture while sitting and that also helps.
Today I even got close to writing some XML... tomorrow I'll work on it more and maybe even test out coding again...