Panel of experts?

Toma
By Toma Latest Reply 2008-09-29 11:13:12 -0500
Started 2008-03-17 08:17:18 -0500

When I was in Salt lake City to meet with Teague and the rest of the AH staff there was discussion of having a panel of experts to answer questions and give feedback similar to about.com and other sites. Is this still an option?

I have several that I have in my contact list that would be a great addition to this site. If this is desired I will contact them all and suggest they take a look at the site.


38 replies

2008-09-29 11:13:12 -0500 Report

I guess I have not been around long enough to know another about the ongoing search for a doctor on sight, but I have come across 2-3 on the site already; I guess they are not observors? I never thought that til now, I thought they were patients like the rest of us.

Leigh Marsden
Leigh Marsden 2008-09-23 13:59:31 -0500 Report

Hello Toma,
How have you been? I just got settled in a 2 bdm in Missouri.So,I am back on-line. I am just wondering how the world is treating you. Thank you for all of the effort that you put in for more resources and information on diabetis! You're appreciated!
Leigh

Amy Tenderich
Amy Tenderich 2008-09-22 06:59:45 -0500 Report

Hi All,

If I may add my 2 cents to the discussion on selecting experts: first, someone's A1c test result is not a good way to determine whether their "expert status." I personally have had some rough phases where my A1c was not so great, but I still feel I have a lot of good info on diabetes to share here.

Instead, we might consider selecting experts in certain "buckets" -- I could recommend a wonderful, down-to-Earth endocrinologist who treats mostly Type 2 patients and could answer MANY questions. We could also look for a Type 1 expert endo, maybe who lives with T1 him or herself.

For patient community experts, we could select people in different walks of life -- a mommy with diabetes (like me!), or a teen with diabetes, a senior with diabetes, a food expert (Toma!), an exercise expert, etc. -- each knowledgeable about their own walk of life with this disease.

There should be a spot on this site with the experts' bios, so folks could determine whom to direct their particular question to.

A tall order -- but it would bring a ton of value to the community.

Edie
Edie 2008-09-22 07:16:11 -0500 Report

I agree with Amy;
I am a 52 year old woman but don't know which type I am. Have been on Insulin since I was in the Hosp. in 2003. My Dr. put my on shots without asking me first. Before that I always controled my Diabetes with Diet and Exercise. I was always told once on shots always on shots. So when I was being Discharged and handed a scrip for Insulin and needles I asked whats this and that was when I found out I was now on shots. I was so mad that when I got home it took me over 6 months to start following Drs. orders again, I thought what is the use it won't change anything. I alos took the Picture of my step sisters off of my Frig. That is what kept me going and not gaining alot of weight, not going to help now I said so did as I pleased. I have gone from 1 insulin to 3 different kinds in the last 5 years. I have not been back to that Dr. since then either. I wrote him a letter letting him know he ruined my life by making me take insulin. I told him that sugar levles rise when there is a problem within the body and will come back down when problem is corrected if not thrown on shots like he did me. I found out since then he is now on Meds for Diabetes a friend that works in the same Hosp told me. What goes around comes around and I don't wish this Disease on anyone not even him. But at the time I thought it was Poetic Justice to happen to him. Please if you have to have surgery let your Dr. know before Surgery up front if not on shots give you a chance to get it back undercontrol with out shots. I was never above 175 before that surgery.
Thankyou for letting me say this and hope it helps someone else.

Greg H
Greg H 2008-09-22 12:40:33 -0500 Report

I agree, you know what they say about experts.

Edie
Edie 2008-09-22 14:08:44 -0500 Report

Thankyou I am begining to feel that alot of the people I listen to on here are more of an Expert than the Diabitic Doctor I had seen intown didn't get much helpful information from there just told what to do and not do. Not my way never did listen to people when they would tell me it is for your own good. I listen better to being asked to do this or that not told. LOL
My mom always told me it would get me in trouble one day, I don't think so. I just know what I want and don't want in a Doctor. Thanks for listening.

Lanore
Lanore 2008-09-23 01:20:21 -0500 Report

Hey Edie,
I am on Insulin right now as well and have been for 5 yrs. Right now I use Lantus, my Dr has told me something different, that if I can get my B/S back in control I can go off the insulin. So I don't believe that once you are on insulin, you are on it forever.
I don't believe all DR's are wrong or bad for you. I have a very good one and trust her with my life. She ahs pulled me though some rough things. Just my two cents. Take care Lanore. :-)

Gabby
GabbyPA 2008-09-19 13:51:20 -0500 Report

Wow, this is a loaded discussion.

Expert? That is a small word with a lot of meaning. I have to say that I am rather disappointed in the "experts" that are guiding so many in their fight to controll diabetes. In fact, they tend to infurirate me.

I have no problem with an "Expert" Section on the site, but I don't want anyone messing with the things that we share in the discussions. I DON'T like the idea of a wickipedia kind of monotoring. What we share are our opinions, no one has a right to edit or sensor them. They can contest them, they can remove them, but they cannot change them.

Like John M. said, the site is a community of people getting together to share experiences, feelings and knowledge. If I want Experts, I go to the medical sites, but to be honest, I don't go there much. What I need here is the support of friends who KNOW where I am coming from.

We have discussions, coffee table, sit down discussions. I think the gals on the site understand what I am saying. We just share, laugh and cry with each other. We are not someone's doctor, we are friends doing what friends do...spending time together talking about the things that matter most to us.

The FDA is an expert...need I say more?
The ADA is the expert, perhaps 30 years ago.
Geeze, the experts can't even agree among themselves, so what makes them "better" than anyone here? 6 years of book learning? Maybe. I have learned more from my friends here on this site in just 5 months than I learned in 4 years of being in a diabetes clinical study at the University of Miami. Go figure.

I have just as much a chance of reading something incorrect in a medical journal as I do here...well, maybe that is a bit of an exaggeration.
I read a lot of posts, and I know which ones I don't take too seriously. Usually, if there is a very stray comment in one, someone will gently step up to the plate and make the correction.

I want it to stay a friendly site. That is why I came. I want it to stay a positive site, that is why I visit everyday. I want it to stay a fun site, it gives me encouragement on a bad day. I like it the way it is...

Avera
Avera 2008-09-18 15:47:20 -0500 Report

This is a great idea. I would sure take advantage of it if it was implemented.

Edie
Edie 2008-09-19 13:24:47 -0500 Report

Read all the Discussions and research what you learn then use what works for you but be sure to ask your Dr. to follow along with you to be sure it is right for you. I am doing this and my numbers are coming down. Thank God for this site and everyone on it. Check out Toma's site I have learned alot over the last 3 days from him.

Robert C. H.
Robert C. H. 2008-09-19 14:31:22 -0500 Report

What is all this arguing about charts and lowest numbers > Is that how we are going to determinewho is Qualfied to answer a question,There are people all over the world with certificates on there walls claiming all sorts of nonesence.Have a Question. Have a dr, respond, have a person in science respond,and then let members respond, not just the ones with the lowest scores, We use this site for information,we may not always agree with what is written, but why should a few,that may have the lowest score dominate, all the rest of us,who may have an oppinion on something be left out in the dark I just read the replys by Gabby & morris.js and feel they were right on the markalthouuh I am relativily new to this site I value it as a source of learning, a source of friendship,and Please give me credit to be able to weigh what I believe to be good advice, and nonsenseI like this site. and need it in my life as it is. But if there is going to be political fighting about who is an expert, and who is qualified to be heard because they have a better BS.or Ac1 then I'm out of here, and will look for a site to fit all of it's members needs Thanks for giving Me a minute of your time

Edie
Edie 2008-09-20 12:53:11 -0500 Report

Robert;
By asking for a Discussion on A1C is to help us gather more info for our use not to tell us what to do. I use this site to get all of the facts I can and then I use my Dr. to follow with me while I try different things to help me better control my BG levels and it is helping me and I hope it also is helping others. I ask alot of Questions because alot of what I hear on here I was never told before I am 52 and was told at 16 I had it or that it was just found by the MDs in Michigan. This site has educated me more than any Dr has in the past and my Dr. said to go ahead and learn all I can from where ever I want to. He is there to keep me safe along the way.

morris.js
morris.js 2008-09-18 10:59:57 -0500 Report

I'm not so sure that we need a panel of experts in the first place. I agree that some of the information offered by people on this site can be very dangerous indeed, but the main objective of this site in my opinion is to offer a place for Diabetics to gather and comfort each other. more often than not, the advise given either good or bad is supported or put down by others making thair opinions known. I find it unlikely that anyone, (even those newly diagnosed), is going to jump on someones advice before others have had a chance to weigh in on it.
I for one am very leary of anyone holding an "expert" status, as there are way too many variables involved. We all know that something that works for one does not always work for another. This site is and should stay, a place for those who suffer with this disease a place to share their experiences, sorrows, friendship, and support. If this site were to become one that begins to "preach" a certain lifestyle or method, rather than being a place to share, I would feel compelled to leave it.
Of course, this is just my humble opinion, and feel that the success of this site thus far, should be proof enough that it is working as well as anyone could of ever dreamed it would.
Thanks for allowing me to throw in my two cents worth. John

Debe Pendice
Debe Pendice 2008-09-18 11:03:01 -0500 Report

I agree !!!

morris.js
morris.js 2008-09-18 11:12:51 -0500 Report

Just to further clarify my comments, I value Toma's advice very much. I have his book, read all his comments in discussions, and feel that yes in certain areas, he is an "expert". One place I did disagree with him is on one of the recipes or discussions about a snack that we as Diabetics should avoid. He has the will power to not partake in the occasional unhealthy snack, but most of us for various reasons ranging from wanting to feel "normal" at an occassion, to rewarding ourselves for an accomplishment, should not be told we cannot do that. Yes we should try to refrain, but thats it. So, as knowledgeable as Toma is, does that also make him an expert in dealing with our mental or emotional issues as well? I'm not trying to pick on Toma, and as I said, I value his advice and knowledge, it just so happens that he made a good example for me to share.

Edie
Edie 2008-09-18 12:34:31 -0500 Report

Here is my two cents worth as it goes. Maybe we could have a place on this site where we can ask advice from experts and then we can decide for ourselves if it is advice that we may want to try for ourselves with our own Drs. ok and followup as it may be helpful to some of us and not to others. As I said before I don't take anyones word any more as I almost died 25 years ago. Checking out everything I hear has helped me over the years with my family Drs. help in following up on what I try. I thought the CORRELATION CHART ABOVE WAS INTERESTING AND IN A WAY IT HAS HELPED ME TO TRY HARDER TO GET MY NUMBERS DOWN AND THAT IS WHAT WE ALL WANT ISN'T IT.

John Crowley
John CrowleyCA 2008-09-17 09:20:15 -0500 Report

As with any large undertaking, plans change. We certainly like the idea of some kind of "expert" badge. The implementation is a complicated issue.

Let me ask you all for an opinion. Should only healthcare professionals be considered experts? If not, what should distinguish an expert from a non-expert?

Should this panel be "elected" by the community based on their contributions to the community? Or do we want to restrict the expert label to those with some kind of scientific background?

Your thoughts about how to implement this would be greatly appreciated. I definitely share your interest in getting this done and also your concerns for those who are misinformed.

I feel like the community as a whole has done a terrific job monitoring itself. I usually get some kind of message or notification anytime someone has posted something inappropriate. And I have been so impressed with the way those who are better informed have taken the time to teach and educate others.

Edie
Edie 2008-09-17 11:06:32 -0500 Report

If your a Dr. or some other member in the Field of Medicine that works in this field post them as Experts those that are just Diabetics Have them post where they got their Information from with their replys. Like I did on the Free Guide to Controlling Your Diabetes. I got it in a email Yesterday. I keep all of my emails in 2 Health Folders for follow up reading and research they are my Diabetes Folder and Your Health. From now on I'll add the Name of the Newsletter and Date my Information comes from if that will help others. I used to work in the Health Care section but I was only an Aide and I worked with Seniors in Nursing Homes. But I check out everything before I try it and always ask my Dr. if it would be safe for me then I try it and follow up with Dr.

DonnaAnn
DonnaAnn 2008-09-17 11:16:10 -0500 Report

The only one who knows about anything are those who have lived it. I have a problem with doctors who are not dibetic: they are only book smart. Thats like telling someone who just stubbed their toe,"that must of hurt!" how do you know that if you have never stubbed your toe! the only real expert is the real person with the real problem. If doctors where experts none of us would have use for this site.

Edie
Edie 2008-09-17 11:27:41 -0500 Report

My Dr. has a family member with Diabetes and we share all info together it helps his family and mine thankyou for your in put it is very astute and right on the money.

Toma
Toma 2008-09-17 17:49:54 -0500 Report

You make a very good point DonnaAnn. One doctor told me diabetics are often more expert than those treating them. In my personal case, if I had not gone searching for answers and found them I would still following the ADA recommendations. Based on what was happening 3 ½ years ago I would probably still be on medication and poorly controlled. When I tried doing it their way I seldom saw BG readings under 250 mg/dl.

Since I have maintained an A1C between 5.0 and 5.6 (last one was 5.0) for the past three years without meds some people such as Jean Blake, Executive Director of the Canadian Diabetes Association, Pacific Region told me I am the expert yet I have no science background or degree. I had to learn it all for myself. I have found good tools such as Ed Prestwood’s nutrition software. I have been lucky to have contact with some of the top people in the field such as Dr. Alexander Jenkins from the Gycemic Index Laboratories in Toronto, Dr. David Hite from California, Dr Robin Conway from Canada and some others. Yet based on academic degrees or accomplishments I have nothing to make any claim on.

John makes a good point. How do you define an expert? In my opinion, it would be based on results. Is the individual dealing with the issues in an above average manner? Are they willing to prove it? (maybe labs and medical records to Alliance Health) If a medical person, are they ahead of the curve? Are their patients well controlled and getting off meds without causing other problems? Are they regurgitating failed strategies or do they have a clear understanding of both the issues and the best practices and most recent research. With type 2 diagnoses up 900% up since 1950 and expected to double again in the next 10 years the system and the system’s experts are clearly failing.

John Crowley
John CrowleyCA 2008-09-18 03:15:28 -0500 Report

Toma,
That's an intriguing concept. Are experts those with an A1c below 6.5? Below 7.0?

That at least would give us something measurable. But I don't know for sure where we would draw the line or exactly how we would manage "applying" to be an expert.

What if we allowed you a prominent place to post your latest A1c on your profile? Would that help members of the site to sort out those who really know what they're doing from those who are still struggling?

tmana
tmana 2008-09-18 04:18:11 -0500 Report

I think determining experts based on personal results or self-selecting persons with results may not be a good determination of an expert. I am coming more and more to the understanding of diabetes — both type 1 and type 2 — being umbrella terms covering a number of distinct conditions, all of which result in elevated blood glucose levels some or all of the time.

Until we find a way of finding out how to tell which specific condition a person has (aside from autoimmune diabetes and MODY, for which tests exist, and surgically-induced diabetes due to removal of the pancreas), optimal treatment to maintain the best possible health for any given patient will be a matter of trial and error.

That being said, persons who have done a lot of research and observation of many people with diabetes and with the ability to write objectively and disinterestedly about the topics may be considered general experts, and persons who have done a lot of research and observation of people with what appears to be a particular type of diabetes (e.g., diabesity, a particular type of MODY, research to uncover specific antigens which may trigger autoimmune diabetes) may be considered experts in their specialties of observation (again, presupposing the ability to hold objective and disinterested intercourse on their topics of expertise).

Edie
Edie 2008-09-18 06:12:17 -0500 Report

I agree with Tama on this. As I said below I do what I think is best for me and follow up with Dr. to be sure it is right for me. I am slowly lowering A1C going slowly went from 9.1 to 7.5 last time hopefully down futher on Oct. 24th next Appt. I get copies of all tests ran and keep in file here at home for follow up. A friend game me the following chart they copied from their Drs. office Hope that you can let me know if Accurate.

CORRELATION OF A1C%
TO ACTUAL BLOOD SUGAR

4- 60
5- 90
6- 120
7- 150
8- 180
9- 210
10- 240
11- 270
12- 300
13- 330

What do you all think of this?

Debe Pendice
Debe Pendice 2008-09-17 11:27:36 -0500 Report

I think it would be nice to talk to "experts" for their knowledge and advice, but not go on there own to follow it until discussed what they learned with their own healthcare professional whether it be their family doctor, endochrinologist, nephrologist,etc.Not every diabetic follow in the same category. You have the type 1 , type 2, pre-diabetic,diabetics with heart problems, diabetics with cancer, diabetic with kidney problems,ones on dialysis,transplants just to name a few. I think it would be wonderful to talk with an expert and see his views. But I think you should also discuss anything you might want to try with your own healthcare professional first before trying anything without them knowing.

Edie
Edie 2008-09-17 11:30:17 -0500 Report

If you looked at my conditions I have several and I don't take anyones word for nothing any more learned the hard way about 25 years ago, almost died and don't want that again. Will do what I think is best for me but only with my Dr. following up to be sure it is right for me.

Goddess
Goddess 2008-09-16 05:14:13 -0500 Report

I agree. What happened?

Edie
Edie 2008-09-16 06:23:43 -0500 Report

Hey when are we going to have those experts on here would be nice to see some advise that helps from them. If they aren't coming let us know please and thankyou.

Toma
Toma 2008-09-17 07:07:08 -0500 Report

Hi Eddie,

Alliance Health already have several experts on the site but they are not easy to identify except for Amy Tendrich who is the DiabeticConnect.com community manager.

There are two types of experts those with academic credentials and those with specific expertise developed through life experience. There are many who talk the talk about controlling blood glucose but few who walk the walk. Few are actually facing the problem and controlling it. Many I talk with who are giving advice are on medications and still their numbers are not as good as they should be. (A1C less than 6 %) There are “experts” at ADA who are still claiming there is no problem with sugar and that all carbs are the same.

I have discussed this with John Crowley who heads the site development team and it is my understanding they are working on how the experts on the site are identified. John mentioned that it is interesting to watch. There are people on the site that are rising to the top because they have good advice and others that clearly have no idea what they are talking about.

Hopefully, John and the development team will figure out how they are going to deal with this issue on the site.

Toma
www.Diabetic-Diet-Secrets.com

kdroberts
kdroberts 2008-09-17 08:04:23 -0500 Report

"There are people on the site that are rising to the top because they have good advice and others that clearly have no idea what they are talking about."

This has been my pet peeve about the site, and it's difficult to monitor. There is a lot of very, very good, to the point and accurate information on the site. However, there is a lot, maybe more, poor, ill thought out, plain wrong and sometimes dangerous information posted as well. The unfortunate thing is that the people who can tell the good from the bad are not the people who need to, it's the people who don't know and take everything at face value that can end up in trouble. I find it particularly bad in the drug reviews with a lot of people taking sensationalized news stories as the gospel truth rather than researching the studies to see what's truth and what has been spun to make a good story.

If there is a way to identify posters of any type who have a track record of posting accurate and sensible information, I'm all for that. Something as simple as a tag or picture underneath the posters avatar would work. It would have to be earned and monitored but it would at least give people who are newly diagnosed or searching for information an indication of which posts are likely to be good and which may need further research to confirm.

tmana
tmana 2008-09-18 04:26:48 -0500 Report

This is why, if I find a press release or item on even relatively reputable site, such as Health Central, I'd much rather post a link to the original research where possible. (John: is it possible to add a second link area for source articles, or to hot-link URLS posted in comments to news items?)

John Crowley
John CrowleyCA 2008-09-25 07:09:23 -0500 Report

tmana,
Sorry, I just saw this comment for the first time today.

I like your idea of enabling hot-link in news comments. I'll get someone working on it.

John

Edie
Edie 2008-09-12 10:35:08 -0500 Report

I would love to have Expert advise at hand when ever i need it. Thanks for the suggestion. This would be great.

Robert C. H.
Robert C. H. 2008-09-16 03:36:14 -0500 Report

Can I ask what happened to this idea the last reply said 4 to 6 wks away that was in march. I think this idea would be a great asset to this site

TRKnight2007
TRKnight2007 2008-03-17 08:27:38 -0500 Report

Toma - Yes, we are thinking about how to implement this, but we are probably 4-6 weeks out. You are welcome to invite the experts to the site for a preview. The more feedback the better. Thanks.

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