First day in and I already hit a snag: I was granted permission to register an account with the Scoliosis Forum, but seemed to lack the authority to view or access most pages and threads, I couldn’t even edit my personal profile – this might make communication with other users somewhat difficult!
I sent out a distress email to the administrator, and lo and behold, a day later and everything was solved! But I wonder… was this the efficient work of the omnipresent forum moderator? or was it simply a computer glitch? I would have liked to receive an email back updating me on my forum status so I could at least attribute credit where it’s due. However once over this hurdle, site navigation was a breeze.
I now had the option to start discussions, post comments on other people’s threads, befriend and even send private messages to particular users. Aside from the typical options available in social network sites, some basic functions I identified as useful in the forum’s infrastructure were:
Reading through the forum I came across an interesting post that covered many of the topics I wish to address in my research regarding the benefits and outcomes of online medical discussion. With the permission of the user, I have attached and dissected the relevance of several segments in the post:
I sent out a distress email to the administrator, and lo and behold, a day later and everything was solved! But I wonder… was this the efficient work of the omnipresent forum moderator? or was it simply a computer glitch? I would have liked to receive an email back updating me on my forum status so I could at least attribute credit where it’s due. However once over this hurdle, site navigation was a breeze.
I now had the option to start discussions, post comments on other people’s threads, befriend and even send private messages to particular users. Aside from the typical options available in social network sites, some basic functions I identified as useful in the forum’s infrastructure were:
- the possibility to request reader receipts for messages and
- the automatic user-name identification system when selecting recipients for messages.
- the 1000 character limit in private messaging. (I found this very cumbersome even when sending an initial greeting to another user)
- the limit of storage in the personal mailbox (although I understand the need for memory restrictions on free sites)
Reading through the forum I came across an interesting post that covered many of the topics I wish to address in my research regarding the benefits and outcomes of online medical discussion. With the permission of the user, I have attached and dissected the relevance of several segments in the post:
“One of the things that bothered me about my daughters’ situation was the assessment of her maturity by way of Risser; she was Risser 0 at diagnosis however almost 1 year post menarche and had already grown 6 inches taller than my wife.”
This implies not only that the user understands the methods in which doctors monitor his daughter’s condition but also that he is aware of additional medical procedures used to observe scoliosis development. A common fear is that laypersons will not be able to comprehend the complex medical jargon found in online reports, however this does not seem to be the case with many patients communicating in this forum.
“We live near a large metropolitan area with several SRS doctors. We sought a doctor who was not only an SRS physician (suggesting a focus on scoliosis) but also knowledge of skeletal maturity indicators. We were fortunate to find one 80 miles away, indeed this fellow writes many papers on skeletal maturity and, in my opinion, is the perfect doctor to assess my daughters somewhat unique circumstances. (As an aside, he used to practice at a Shriners hospital and used to offer the SpineCor. He is now participating in the Braist trial).”
This proves that the user was able to understand, search and find a physician he feels would best treat his daughter. He was interested in the doctor’s expertise, work experience, involvement in research and choice of treatment methods; hopefully one that would fall in line with how he would like to see his daughter treated. I believe given proper research and understanding, patients should be involved in their medical decision-making.
“Yesterday, we went to our appointment with great anxiety (even more so after reading Sharon’s post).”
This shows that other patient’s posts are of importance to users; whether they comfort or warn patients of situations they may want to avoid.
“In any event, we went into the consultation room after she had her xray. The doctor soon followed along with a student (intern? Resident? I don’t know, it is a university/teaching hospital).”
Clearly there was insufficient doctor-patient communication regarding the additional person; this could be considered inconsiderate behavior that may ultimately result in additional stress on the physician-patient relationship.
“I am not suggesting that bracing doesn’t help or that folks should use our isolated case history as reason to abandon bracing. I am just offering our experience as food for thought.”
Another common fear is that laypersons cannot decipher between credible medical information and mere opinion that is posted online. This is a legitimate concern, but clearly, some users post responsibly making an obvious separation between fact and personal belief. There is great opportunity here in helping users identify reliable information; perhaps physicians, clinics or hospitals can moderate or endorse forums creating a more dependable resource.
“I am indebted to ALL the forum participants here who helped me wade through the issues and literature.”
This is only one of many ‘thank you’ posts I read online further proving that the support, comfort and advice given on these Internet forums greatly benefits its users.
Thanks to a reader, I was also given a lead: scoliosis-support.org, a European site, which apparently receives brief visits from a medical professional who addresses questions from participants about a large medical trial she is conducting. It would be interesting to compare information, users and levels of comfort experienced when forums have professional involvement.
This implies not only that the user understands the methods in which doctors monitor his daughter’s condition but also that he is aware of additional medical procedures used to observe scoliosis development. A common fear is that laypersons will not be able to comprehend the complex medical jargon found in online reports, however this does not seem to be the case with many patients communicating in this forum.
“We live near a large metropolitan area with several SRS doctors. We sought a doctor who was not only an SRS physician (suggesting a focus on scoliosis) but also knowledge of skeletal maturity indicators. We were fortunate to find one 80 miles away, indeed this fellow writes many papers on skeletal maturity and, in my opinion, is the perfect doctor to assess my daughters somewhat unique circumstances. (As an aside, he used to practice at a Shriners hospital and used to offer the SpineCor. He is now participating in the Braist trial).”
This proves that the user was able to understand, search and find a physician he feels would best treat his daughter. He was interested in the doctor’s expertise, work experience, involvement in research and choice of treatment methods; hopefully one that would fall in line with how he would like to see his daughter treated. I believe given proper research and understanding, patients should be involved in their medical decision-making.
“Yesterday, we went to our appointment with great anxiety (even more so after reading Sharon’s post).”
This shows that other patient’s posts are of importance to users; whether they comfort or warn patients of situations they may want to avoid.
“In any event, we went into the consultation room after she had her xray. The doctor soon followed along with a student (intern? Resident? I don’t know, it is a university/teaching hospital).”
Clearly there was insufficient doctor-patient communication regarding the additional person; this could be considered inconsiderate behavior that may ultimately result in additional stress on the physician-patient relationship.
“I am not suggesting that bracing doesn’t help or that folks should use our isolated case history as reason to abandon bracing. I am just offering our experience as food for thought.”
Another common fear is that laypersons cannot decipher between credible medical information and mere opinion that is posted online. This is a legitimate concern, but clearly, some users post responsibly making an obvious separation between fact and personal belief. There is great opportunity here in helping users identify reliable information; perhaps physicians, clinics or hospitals can moderate or endorse forums creating a more dependable resource.
“I am indebted to ALL the forum participants here who helped me wade through the issues and literature.”
This is only one of many ‘thank you’ posts I read online further proving that the support, comfort and advice given on these Internet forums greatly benefits its users.
Thanks to a reader, I was also given a lead: scoliosis-support.org, a European site, which apparently receives brief visits from a medical professional who addresses questions from participants about a large medical trial she is conducting. It would be interesting to compare information, users and levels of comfort experienced when forums have professional involvement.
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