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EssCurve
10-19-2009, 11:31 AM
Hi, my name is Lora and I’m a Canadian student completing a Masters in Communication at Rutgers University in New Jersey, USA.
I also have scoliosis; thoracic 47, lumbar 27 (was casted for all my 4 Boston braces and wore a SpineCor for 1 year; never had surgery)

My master’s focus is on medical communication and my working thesis studies The Effects of medical Internet research and communication on doctor-patient relationships.

I am interested in empowering patients by providing them with the information and support needed to become more involved in their medical decision-making. I believe the Internet is a great resource for both physicians and patients and would like to conduct studies that show the benefits and identify opportunities for improvement of the dissemination of health information online.

One of my courses requires students to keep a blog. My blog, http://esscurve.blogspot.com/, addresses online Scoliosis communication, and has links to drafts of my research work.

I would greatly appreciate input from members of this forum about any online medical research or communication they have conducted.


Please post opinions, comments, thoughts, anything on this forum thread, my blog, or send me a personal message or you can email me at lora.lightning@gmail.com.
I keep all my information anonymous and only post when users give permission; I understand the importance of privacy.

The following questions are ideas about areas of interest:
1) What are your opinions about the credibility of medical information you read online?
2) Are you comfortable discussing information you find online with your physician?
3) Do you use “rateMDs.com” or similar sites to post comments about doctors?
4) Do you understand the medical papers and research find online?
5) What do you think would improve your medical Internet search and communication?

Thank you to all the forum members that have helped me cope with my condition over the years. I hope that in turn my research will help other patients and doctors.

Ballet Mom
10-19-2009, 04:59 PM
Hi Lora,

Welcome to our interesting forum. Sorry to hear about another ballet student with scoliosis.

I love your cartoon on your blog... "I already diagnosed myself on the internet...I'm just here for a second opinion". Love it! Isn't that the truth.

Good luck on your forum and your master's degree!

Pooka1
10-19-2009, 05:55 PM
Please post opinions, comments, thoughts, anything on this forum thread, my blog, or send me a personal message or you can email me at lora.lightning@gmail.com.
I keep all my information anonymous and only post when users give permission; I understand the importance of privacy.


Your research topic sounds very interesting. Do you want only patients or do you also want parents of patients? If the latter, here are my answers...


The following questions are ideas about areas of interest:
1) What are your opinions about the credibility of medical information you read online?

It varies. Stuff from board certified types is probably high quality but you occasionally have a ringer in that group. :D The rest is fluff.


2) Are you comfortable discussing information you find online with your physician?

Only stuff published in refereed journals, preferably top-shelf. I would not waste his time with anything else other than to joke about it.


3) Do you use “rateMDs.com” or similar sites to post comments about doctors?

No. Waste of my time.


4) Do you understand the medical papers and research find online?

This is the single biggest problem I would said professionals have in fielding questions from lay folks. I am a research scientists but not in a medical field. So while I can understand most results, I can't really critique anything other than universal scientific methods issues.

The most glaring problem in the bracing literature for example that should be obvious to anyone even without a science background is the lack of control groups. The Scoliosis Research Society pointed this out several years ago. It doesn't help to keep doing these uncontrolled studies and is in fact unethical in my opinion when kids are wearing braces and the result will never be interpretable due to lack of controls.

Now I understand that it is very hard to do a controlled study in medicine but we are talking enrolling kids in uncontrolled studies. The BRAIST Study is the first RCT out there trying to do an ethical study by having an observation group. So maybe we can finally get an answer on the efficacy of bracing even though many of those kids will likely have worn a brace for nothing. It's heart-breaking.


5) What do you think would improve your medical Internet search and communication?

Well I wish folks would run things past Quackwatch or at least check if they are on Quackwatch before posting them to fora such as these where you have new people who aren't familiar with the topic. For example, I posted an exchange I had a while back with Quackwatch about Schroth.


Thank you to all the forum members that have helped me cope with my condition over the years. I hope that in turn my research will help other patients and doctors.

Good luck with your research!

concerned dad
10-20-2009, 09:05 AM
Hi Lora,
Too bad you're not studying sociology, you could probably do a PhD dissertation on us :D

I wanted to point out another website that may be somewhat related to your topic => www.askapatient.com
While not a forum, there people post their experiences with different drugs.
Of particular interest to me are the reports about the drug Boniva (http://www.askapatient.com/viewrating.asp?drug=21455&name=BONIVA). My mom had a horrible reaction to it and, while searching for information, I stumbled across that site. At the time, there where probably only 100 user reviews of the drug. Now, there are almost 1000 (the average user ranking of the drug is 1.3/5 => the lowest I've seen for any drug discussed on that site.

Anyway, not sure if it related to your research but I thought I would throw it out there for you.

Also, what was your experience with the SpineCor after the four Boston Braces. If you dont mind sharing, how old were you when you started w/ the SpineCor and what kind of results did you see?

Ballet Mom
10-20-2009, 11:29 AM
Hi Lora,
Too bad you're not studying sociology, you could probably do a PhD dissertation on us :D



LOL, I was thinking the same thing! :D

EssCurve
11-02-2009, 06:51 PM
Thanks for everyone's responses. You are all very helpful - I am sorry I have not been present on the forum lately, I have just been swamped with work. I will make a big effort to post more frequently and keep you all updated.

Thanks,
Lora