AMG Workshop Slides Online -- and Evaluation

[Tim Horn]

Hi Gang --

FIrst off, I'd like to say, once again, what a privilege it was to have had the opportunity to speak with so many of you at the Friday Night AMG meet-and-greet in Montreal.  And, of course, I was thrilled to see so many of you at the Saturday morning workshop.     

LCD technical issues notwithstanding -- the bulb simply didn't survive the trip from office, to home, to Toronto, and finally to Montreal -- I really wanted to make sure that the slides that I intended to present (and were the basis of my talking points) were made available everyone, including those who attended the workshop, those at AMG who never made it, and the rest of the Forums members. (Please feel free to ask questions in the AMG Forums regarding any of the slides if they don't make sense.)

This link will take you to the slide presentation, located on the AIDSmeds.com server:

Link no longer available

With that said and done, I would very much like to throw out an evaluation form for everyone who attended to workshop to complete.  Given that there's been a lot of really great conversation since AMG regarding the format of future gatherings -- compounded by the fact that there seems to be an interest in other informational-based workshops at these events (not necessarily by me) -- completing this evaluation wouldn't only be helpful to me, it would undoubtedly be helpful when planning future workshops at AMGs. 

Please feel free to cut and paste these questions for completing in your own message in this thread.  Of course, you may also cut and paste the questions and respond to me directly via PM, but please know that I'm very much open to constructive criticism out here in the open.  I've done a lot of speaking and workshops before and I really do value both positive and negative feedback.  Plus, in order for future workshops to benefit, filling everyone in on what you thought was "good" and "bad" about the workshop in Montreal would be extremely helpful.  Thanks guys.

1. What aspects of this workshop were particularly beneficial to you? Please be specific.

2. What aspects of this workshop detracted from your learning experience?

3. The material was communicated clearly and was easy to understand

Strongly Agree   
Agree   
Disagree   
Strongly Disagree

4. What was your comfort level with the topics covered prior to the workshop?

Very Comfortable   
Somewhat Comfortable   
Not Comfortable At All

5. What is your comfort level with the topics now?

Very Comfortable   
Somewhat Comfortable   
Not Comfortable At All

6. How would you classify the material presented in this workshop?

Too Detailed   
Just Right   
Too Simplistic

7. Do you find the online slide presentation useful?

8. What did you find the most beneficial from this workshop?

9. Was there anything that you felt should have been covered that was not?

10. Do you have any suggestions for topics you would like to see covered in future workshops?

11. Any other comments?

Thanks so much, everyone...

Tim Horn

[cmhjeff]

Thanks Tim, We've all heard great things about your presentation and I look forward to looking through the slides when I have more time.

I hope there are some pictures of the sexy presenter. 

[RAB]

1. What aspects of this workshop were particularly beneficial to you? Please be specific.

1.  As someone who is on what's referred to as "salvage therapy" I was particularly interested in news out of Toronto (IAC) about upcoming new drugs.  (If my current regimen of 2 PIs, Fuzeon, Epivir, Viread fails, I'm going to need those drugs.  I call it my plan B.)

The past ten years has seen substantial progress in managing virologic failure. Particularly impressive were the gains in virologic control with the use of enfuvirtide (Fuzeon) as a new class. The advantage was the 30% increase in rates of virologic control in the TORO, RESIST, and POWER studies.

2.  The discussion on where we've come from also brought to mind how important it is to understand that some of what we assumed at the beginning turned out to not be true.  Not just mono therapy, but even how some drugs interact with one another, how depending on first or second regimens, someone's possible resistance profile can become very difficult very easily.  That reminded me of how crucial it is to make sure we are seeing doctors who know what in the heck they are doing, who are keeping up on the latest, and well they have some real experience behind them.

(I suppose both 1 and 2 seem pretty focused on my individual situation, but that's what interests me the most obviously.   )

3.  The discussion of this ridiculous ban we have in the U.S. for visitors with HIV.
4.  The role those of us played in the early days of this epidemic of pressuring the FDA to change the review/approval process for experimental drugs.  Something which has now become the standard.  I had forgotten about that.

2. What aspects of this workshop detracted from your learning experience?


1.  Nothing really detracted, not even the projector failure.  Right after Tim's presentation, before we moved into additional territory, it might have been good to ask for questions from those in the group.

2.  O.K. there was one tiny little thing (I had to rack my brain to come up with even this!).  He used the word "essentially" too darn much.  I think he started every third sentence with that word!  (Kiss kiss, hug hug, love ya! )   

3. The material was communicated clearly and was easy to understand

Strongly Agree   
Agree   
Disagree   
Strongly Disagree

  STRONGLY AGREE  Tim had a commanding knowledge of the subject matter.

4. What was your comfort level with the topics covered prior to the workshop?

Very Comfortable   
Somewhat Comfortable   
Not Comfortable At All

I've lived with HIV for over two decades--I guess I'm about as comfortable as I'm ever going to be.  So my answer if probably: Very Comfortable.

5. What is your comfort level with the topics now?

Very Comfortable   
Somewhat Comfortable   
Not Comfortable At All

SEE ANSWER TO #4

6. How would you classify the material presented in this workshop?

Too Detailed   
Just Right   
Too Simplistic

Just right

7. Do you find the online slide presentation useful?

HE HE HE     I confess I haven't checked it out!

8. What did you find the most beneficial from this workshop?

  1.  Hearing Tim's summation of what he felt was some of the more important information coming from the IAC.
2.  Knowing that despite what sometimes appears a snails pace, we are making progress and we have truly come a very long way. 

9. Was there anything that you felt should have been covered that was not?

1.  As I mentioned above, seeing if anyone had any questions right after Tim finished would have been nice.  As it was, we ran out of time before we could get back to that.


10. Do you have any suggestions for topics you would like to see covered in future workshops?



11. Any other comments?

  In another thread about AMG we are hearing a very broad range of suggestions for what the next gathering should be.  I for one feel that what Tim presented was perfect for our gathering.  If he is able to join us in the future, his two/two 1/2 hour presentation would be something I would anticipate greatly.  I get a lot of information about HIV from this web site, my doctor, Hopkins, etc, I'm not sure I need a whole lot more, but because of Tim's position, reputation, and up to date commanding knowledge, I'd hope he makes it a point to always be part of future AMGs.


Edit to add:



I have gone through the slides of your powerpoint presentation, and they reminded me of just how much information you provided.

So in that vain, I would amend my answer to #1 to include the following.

5.  The clinical important of achieving a VL of <50 because of resistance issues.

Analysis of the latent pool showed that there was no viral evolution with new resistance mutations when the viral load was suppressed to a level below 50 copies/mL. Thus, analysis of HIV strains in the latent pool matched the strains in plasma, but viral loads above this threshold were associated with new resistance mutations.

6.  The clinical importance of adherence. 

In a frequently-cited publication, Paterson and colleagues showed that with PI-based HAART it was necessary to take 95% of prescribed doses to achieve a 80% probability of a viral load < 400 copies/mL. Subsequent work by Bangsberg and colleagues found that the adherence story is far more complicated, and that completely different equations apply to boosted PIs and to NNRTI-based HAART.

7.  The crucial element of Ryan White and that programs integral part in not just treating HIV but stopping it's spread.

At present, the cost of HAART is about $10,000-$12,000/patient/year in the United States and is likely to substantially increase with new agents and far more aggressive treatment of patients with virologic failure. Even in developed countries, the issue will be in getting the resources to pay for drugs. In the United States, the salvation for covering expensive care for a disease that preferentially attacks disenfranchised patients has been the Ryan White Care Act, and the hope is that this support will track with the numbers of patients and cost of increasingly expensive per-patient treatment. But that probably won't be the case. In developing countries, the need will be for access to high-quality drugs at a nominal cost.

Just for the record, my regimen (including a small number of non specific HIV meds) is approaching $5000.00 per month.  Annual cost of $60,000.00  YIKES


Now that I have reviewed the slides from your presentation, let me again state how much I appreciated the information/historical perspective you gave to us.  Some of this I had already forgotten in the nearly two weeks since we were in that conference room.

[J.R.E.]

Hello Tim,

First of all, I would like to thank you, for taking the time to putting together the slide show, and to make this available for all of us, that did not attend  AMG-06. THANKS! It is VERY MUCH appreciated !!

If I was to be able to attend an AMG,( which could always be a possibility), I would most likely be interested in "NUTRITION AND DIET", "RESISTANCE ISSUES,"  and  "SALVAGE TREATMENTS". 

What would the chances be, of getting a guest speaker,( or yourself) knowledgeble in HIV/AIDS, to speak in the subject matter of NUTRITION and DIET/ VITAMINS AND SUPPLEMENTS. ? After all, we ALL have to take responsibility in our lives and our daily health, the meds and strict adherance isn't going to be enough, to live long term with this, it takes much more then that.


Nutrition and diet/ Vitamins and supplements, are big issues on the forums, and I believe it is subject matter that will go over very well with most people.


Anyway, those are just some basic thoughts of mine. Once again THANKS Tim for the the slideshow, and thanks for keeping us updated in the "NEWS" section of the site.




Respecfully----------Ray

[anniebc]

Hi Tim

Thank you so much for taking the time to be with us in Montreal..I really enjoyed your presentation...I wish I had more time to sit and answer your questions in depth, but my time is so limited at the moment.

So in answer to your questions:

Q1..The recent updates from Toronto were very interesting, especially the news of new drugs coming to the market.

Q2..Nothing detracted..except the power point slide show would have helped me to put everything together a little better.

Q3..Strongly agree..despite the loss of the power point I think Tim presentation was very articulate.

Q4..Very comfortable..having only lived with the virus for 4 years I'm lucky to be in a good place right now.

Q5..Same as question 4

Q6..Just right...anything too deep and scientific only confuses me.

Q7..I found the slide show to be well presented, interesting and informative.

Q8..That so much is still being done in this field..albeit not as fast as we would like.

Q9..I think Tim covered most things..but agree with Rocky i think a short "question time" would have helped those of us who needed to verify a few things.

Q10..Can't think of anything right now, but I'm sure something will come up over the next year.

Q11..Only to say that I hope Tim will make his presentations a part of the AMG's..I think having Tim there showed us not only how important this site is to many of us but how important we are as a group of people living with HIV..thanks again Tim for taking the time to be with us.

Jan.

[Ric Wilke]

Hi Tim,

It is my pleasure to respond to this thread.  I hope that our comments serve as a platform for future presentations at AMG functions to come.

1. What aspects of this workshop were particularly beneficial to you? Please be specific.

I am a relative “newbe” to this new direction to my life.  I was diagnosed in September 2001.  I found it so remarkable about how far we have come with regard to treatment options, but also disturbed at how far we still have to go to find a cure and helping those who are at the end of their rope in terms of available treatment options.  It also made me realize just how lucky I am with my treatment regime.

2. What aspects of this workshop detracted from your learning experience?

At times, I could not take my eyes off of Tim.  He is just to damn gorgeous!  I had to pinch myself so I could focus on his words and not his fantastic looks.

3. The material was communicated clearly and was easy to understand?

Strongly Agree.  Tim is a natural.  He captives a group and bonds with them effortlessly.  He has a wonderful ability to relate to the group.  His presentation was from the heart and left a lasting impression on me.

4. What was your comfort level with the topics covered prior to the workshop?

Very Comfortable.  AIDSmeds.com is my soul resource for information about HIV/AIDS.  The topics covered were totally in line with the Message Statement of the Website.

5. What is your comfort level with the topics now?

Very Comfortable.  Please see my comments in Question 4.

6. How would you classify the material presented in this workshop?

Just Right.  I actually understood what was being presented.  Sometimes this is not easy for me.  The material was on a level that I could understand and relate to.

7. Do you find the online slide presentation useful?

Absolutely, it helped to reinforce what was presented and discussed.  More importantly, it became available to those forum members who were not able to attend in person.

8. What did you find the most beneficial from this workshop?

First of all, the new treatment options which are on the horizon.  I also liked the discussion of the USA Visitor Ban of HIV Positive People.  This is something that needs to be worked on.  It is simply unfair. 

9. Was there anything that you felt should have been covered that was not?

Nothing comes immediately to mind, but I may have some suggestions in the future.

10. Do you have any suggestions for topics you would like to see covered in future workshops?

I know that this has been mentioned and I realize that time did not allow, but a Q&A period would have been beneficial.  As Thom and I like to eat healthy, we would like to see a discussion with regards to diet and nutrition.

11. Any other comments?

To have the opportunity to meet Tim and Andy has been a dream of mine since I joined the Forums in October 2002.  Both of them give selflessly of themselves to the HIV/AIDS community.  I cannot thank them enough for all they do.  Now, if I can meet Peter and Ann, my dream will be complete.  Thank you all.

With warmest regards and deepest respect, Ric

[Tim Horn]

Thanks Guys!

These comments are helpful... and, thus far, I'm reading everyone loud and clear regarding the need for more Q&A time. 

Keep the feedback coming.  And don't be shy to list various topics you'd like to see covered in future workshops; this information is, perhaps, the most important.

Cheers,

Tim Horn

[Cliff]

1. What aspects of this workshop were particularly beneficial to you? Please be specific.

- The detailed discussions of the studies.  There are numerous studies performed and the summaries/anaylsis on the internet are at best confusing (for laymen).  It's nice getting the information in a format that folks living with HIV can understand.

- Getting a brief history of the clinical side of HIV, particulary the big conference year (1996).

- Discussion on the various hot topics of the day (massive/routine HIV testing), economics of the disease and salvage treatment/treatment interruptions.

- Overview of the big conference related news in Toronto.

2. What aspects of this workshop detracted from your learning experience?

- Because you sat down during much of the presentation, I was unable to see you at times.  You were great at projecting your voice, but I would recommend standing or sitting on the table, because eye contact is good in intimate settings.

3. The material was communicated clearly and was easy to understand

Strongly Agree    

4. What was your comfort level with the topics covered prior to the workshop?

It varied.  I feel as though I'm a "Very Comfortable" on some of the more technical aspects of the topics and a "Somewhat Comfortable" on the political topics.   

5. What is your comfort level with the topics now?

On the more political topics, my comfort level has increased slightly.

6. How would you classify the material presented in this workshop?

Just Right

7. Do you find the online slide presentation useful?

Yes (I just checked them).  The info on the slides is fine.  My recommendation would be to consider the color scheme.  It's a bit too blue (a very calm and conservative color, which is good, but sometimes it may be too mellow when it's blue and white...especially if it's a morning presentation).   Sometimes a burgundy background can be nice, with white font.

8. What did you find the most beneficial from this workshop?

The discussion of new drugs available, Kaletra vs Sustiva and treatment interruptions.

9. Was there anything that you felt should have been covered that was not?

- Given the time restraints, no.  There is much more that could have been covered, but the objective was not to be comprehensive.  No suggestions here.

10. Do you have any suggestions for topics you would like to see covered in future workshops?

- Process of bringing a drug to market (and the dynamics as impacted by the major research univerisities, governments, drug companies, insurers, etc..)  There seems to be a lot of varying degrees of understanding of exactly how drugs are brought to market AND why they are priced at the level that they are.

- Challenges of maintenance of HIV infection and other diseases (HCV, HBV, etc..)

- New drug developments (and can someone explain to me why we don't have very many new nukes in the pipeline when those are the drugs people tend to have the most resistance issues with?)

- Smart+Strong and where Poz is headed post-merger (what's this new stuff Reagan mentioned was coming in one of her blogs?)

11. Any other comments?

- More Q&A time (partly out of your control, but something to consider nevertheless)
- Announce at the beginning of the program if questions are okay during the program or if you prefer that the audience save them for the end (if you go with the latter option remind people that they are note pads/pencils available to write their questions down).

[AlanBama]

Hi Tim.   here goes:

1. What aspects of this workshop were particularly beneficial to you? Please be specific.   The discussion about new drugs, particularly for those of us who have been on so many already.  Always helps to know what we have to look forward to, possibly.

2. What aspects of this workshop detracted from your learning experience? None really, it was all good.

3. The material was communicated clearly and was easy to understand

Strongly Agree   

4. What was your comfort level with the topics covered prior to the workshop?

Very Comfortable   - I've lived with HIV/AIDS for 20 years now, if I was uncomfortable about any discussion of it I'd be huge fool now wouldn't I?  LOL

5. What is your comfort level with the topics now?

Very Comfortable   -same answer as above

6. How would you classify the material presented in this workshop?

Just Right   

7. Do you find the online slide presentation useful?  Yes

8. What did you find the most beneficial from this workshop? The feeling that I was actually a part of and "belonged" at AIDSmeds and POZ.

9. Was there anything that you felt should have been covered that was not? A question and answer period would have been nice, I think.

10. Do you have any suggestions for topics you would like to see covered in future workshops?   More info on facial fillers/reconstructive procedures; that, in particular, is affecting me these days...my doctor actually conceded to write "Lipoatrophy" as part of my diagnosis last Friday, until now he has said "you look fine to me"....DUH.

11. Any other comments?   Thank you Tim for taking the time to come and make this presentation to all of us.   I certainly appreciated it.

Hugs,
Alan

[Robert]

Hi Tim

1.  What aspects of this workshop were particularly beneficial to you? Please be specific.

The fact that the workshop was presented by someone with HIV/AIDS who not only understand the in-depth science behind the virus but also the more subtle nuances that affects all of us. 

2. What aspects of this workshop detracted from your learning experience? 

I felt like we were rushed. 

3. The material was communicated clearly and was easy to understand

Strongly Agree   YES
Agree   
Disagree   
Strongly Disagree

4. What was your comfort level with the topics covered prior to the workshop?

Very Comfortable   XX
Somewhat Comfortable   
Not Comfortable At All

5. What is your comfort level with the topics now?

Very Comfortable   XX
Somewhat Comfortable   
Not Comfortable At All

6. How would you classify the material presented in this workshop?

Too Detailed   
Just Right   XX
Too Simplistic

7. Do you find the online slide presentation useful?

  Well, sort of.  I liked what I saw on line but I needed your explanation to go with the slides.  Next time I hope we can get the machine working.

8. What did you find the most beneficial from this workshop?

   Meeting you and having all of us in the room together to talk about this stuff.

9. Was there anything that you felt should have been covered that was not?

   Well I can't remember but did we talk much about current side effects like depression, ennui, lethergy, and how to combat them?    That might be for another presentation but I think it's something we should at least touch upon.  Also, it would be interesting to see who is on what meds and how their own experiences with them.
 
   Also, more time for questions and answers.

10. Do you have any suggestions for topics you would like to see covered in future workshops?  See number 9.

11. Any other comments?

Tim, you're top drawer.  Thanks for the wonderful presentation.

robert

[allanq]

Tim,

I didn't go to the Montreal gathering, but your slide presentation is a very clear overview of many important topics. Thanks very much for posting it.

Allan

[Jody]

1. What aspects of this workshop were particularly beneficial to you? Please be specific.

Any discussion of new meds coming down the pipeline and hope for the future as well as advocacy discussions we can contribute to as a group.

--------------------------------------------------------------------------------------------------- 
2. What aspects of this workshop detracted from your learning experience?

None
------------------------------------------------------------------------------------------------------
3. The material was communicated clearly and was easy to understand

Strongly Agree   x
Agree   
Disagree   
Strongly Disagree

4. What was your comfort level with the topics covered prior to the workshop?

Very Comfortable  x
Somewhat Comfortable   
Not Comfortable At All

5. What is your comfort level with the topics now?

Very Comfortable   x
Somewhat Comfortable   
Not Comfortable At All

6. How would you classify the material presented in this workshop?

Too Detailed   
Just Right   x
Too Simplistic

7. Do you find the online slide presentation useful?
Yes
---------------------------------------------------------------------------------------------
8. What did you find the most beneficial from this workshop? 
Just the general discussion to keep us all informed and our eye on the prize (goal) of eradicating HIV.
------------------------------------------------------------------------------------------------

9. Was there anything that you felt should have been covered that was not?
NO
--------------------------------------------------------------------------------------------------

10. Do you have any suggestions for topics you would like to see covered in future workshops?
It was well done, very prepared and informative.
-----------------------------------------------------------------------------------------------------

11. Any other comments?

Thanks to Tim and Andy for going to Toronto and bringing the conference to us in Montreal.

Jody