Forum Scorecard?

[Pete]

I have a suggestion for the forum admin.  How about a single source document with everyone's stats posted?  Could be a simple spreadsheet. Including such information as:

User Name
Brief Histology
geno type
Biopsy Score
Pre test labs
TX start date / Treatment Protocol
Side Effects
2 ,4, 8, 12 test results and post test results

I bring this up because I find it pretty tough sometimes (+time consuming) to follow how individual members here are doing. Folks may post results at times replying in the middle of a topic, or may start one of their own. 

While the personal stories add great value to the community here, sometimes results are buried in the middle of a long thread.  I'd like to be able to clink on a link and see the all results.  For example, can anyone tell me what the SVR % of forum members is?

Maybe it's to early to tell with such a new drug as Harvoni.  But overtime, that number could (and should) be tracked.  With over 2000 members here I would think these tallied results would give tremendous value to both this community and Health Care Professionals. I suppose one could argue its not really legit because anyone could join and post bogus numbers.  That would be really sad, but I guess there is that possibility.

I have noticed that many are posting key dates and stats at the bottom of their posts.  I will start doing the same. 

Just an idea, thought I'd mention it. 

Regards,
Pete

[charly8]

I find it helpful if everybody has their stats at the bottom of their signature like you mentioned. 

But it would be helpful to keep a running tally of SVR 12 and relapsers along with their stats for reference as a sticky.

[dragonslayer]

Charly.. I agree.. I almost think it should be mandatory for everybody to construct a forum profile Signature which features their key HCV stats...  People have a way of posting a milestone, which, without sufficient context, is all well and good to elicit a 'Congratulations' from the readership, but does very little to further anybody's knowledge... Its really crucial to have this data, and I think the Signature is an ideal way to do it; even better than a spreadsheet.. Why?   If someone posts 'my 8 wk test showed a viral load of 37', in order to find out what this really means in terms of treatment duration, their liver condition, applicability to others in treatment and to whom, etc, etc, youd have to leave the post, open up the spreadsheet, search for the post author, etc... However, with a good Signature entry, youd know right then and there what the post really means.

If we are going to be a more effective support and learning forum, we need people to enter their data in their signatures.. The mods have tried to get folks to do it, but they compliance is not great.

[Bituman]

Establishing a database is a super idea.  However I agree with Pete that it ought to be in one place.  That seems more effective than sifting through a bunch of signature lines. 

I'm one of the offending people that don't include stats in signature line.  I have periodically posted results as treatment progressed.  But I thought it would be better to post ALL my stats TOGETHER upon completion of treatment.  Perhaps I was wrong. I can't think of any down side to doing that.  Maybe I will try to get it done later today. 

Bob

[petra]

As a relatively rare genotype "2" I have found sifting through the forum, looking for information, very time consuming. I have taken the time and I have even tried to keep notes. Organizing the information on the forum would be so very helpful. I'm waiting for my 12 week end of treatment blood work results. I should have the results by the 14th of this month.

[Bituman]

Maybe I will try to get it done later today. 

See below (and above), got it done.  Bumped up against 500 character limit. 
Bob

[BubbaT]

Great idea guys!
Way to go bob you did it!     

[sapphire101]

Solid idea Pete.
The forum could put this information in  a separate spot and then is would be easy to see at a glance who was on what treatments and where they are in the time space continuum that is HCV treatment.


Weak attempt at a Forum Joke:
Question- How can you tell a newbie from a seasoned forum poster?
Answer- By the length of their signature!!
bwaawhahhahaha


My signature is growing week by week and I need to get in there and clean it up a bit . Put that on my 'to do' list.

[Mike]

While I think this information would be beneficial, it presents some logistical issues.

First, not every member is comfortable sharing medical information on the internet. If this became mandatory, it might discourage a number of people from joining the forum, which is something we don't want to do.

Second, to cull this information from posts would be a very time consuming venture to (a) obtain the information; (b) to organize it into a single document and; (c) to continually update the document.

Maybe we could start a new thread/post under the header: "Member Lab Results and Progress." Members could post results under the thread, and, since we can edit/modify our own posts, each member could add new results/update status within their individual post. This would be a rolling/living thread.

Any thoughts?

Let me know, Mike

[charly8]

I agree Mike.  I think the easiest thing is just to recommend that people put the relevant info in their signature, rather than trying to track down peoples information on some central list that needs updating.

I still think a sticky thread with SVR info / relapse info would be helpful.

Possibly like this:
SVR4 Not detected / detected (relapse)
SVR 12 pending
List of info

There are only a few of these people right now that could even give SVR4 or SVR12 info but very very soon in the next couple weeks we should get a flood of people getting their SVR4 test back and some their SVR12 back. 

I think some of the thinking that is coming from EASL is that the 8 week people may need longer duration if they are still detected at week 4 according to some readings.  If this turns out to be true, this may help some people request more tx from the doctor if we starting seeing more relapses than the initial trials suggest.

[dragonslayer]

I agree Mike.  I think the easiest thing is just to recommend that people put the relevant info in their signature, rather than trying to track down peoples information on some central list that needs updating.

I still think a sticky thread with SVR info / relapse info would be helpful.

Possibly like this:
SVR4 Not detected / detected (relapse)
SVR 12 pending
List of info

There are only a few of these people right now that could even give SVR4 or SVR12 info but very very soon in the next couple weeks we should get a flood of people getting their SVR4 test back and some their SVR12 back. 

I think some of the thinking that is coming from EASL is that the 8 week people may need longer duration if they are still detected at week 4 according to some readings.  If this turns out to be true, this may help some people request more tx from the doctor if we starting seeing more relapses than the initial trials suggest.

I like the idea of using the Sigs too for posting relevant case data; I like the idea that each person has control over his data, etc, etc.. There are a lot of people here who appear to have very little experience with forum protocol, and how it all works.. Its going to be a leap to get them to enter the relevant data and use the sig feature.. Still, I think its worth it..  Mike is right; my idea about making it mandatory was heavy handed and not the approach that should be taken....

Charly, please provide a link, if you can, about the EASL info relative to the 8 weekers.  Im surprised to hear that talk is picking up regarding Harvoni 'response guided treatment' which is what it would be if on treatment labs are going to be recommended, and action taken based on those labs.. Because that thinking has definitely not, in the means, been part of Harvoni treatment.  What new data regarding the 8 weekers is tilting this 'new' thinking?  Obviously, what we'd want to know is, on a global basis, is there an unexpected increase in 8 weekers relpase rates that isnt correlating well with the trial data, and is that the cause of this 'new' thinking?  ... A link would be real helpful.

Thanks much...

[charly8]

I like the idea of using the Sigs too for posting relevant case data; I like the idea that each person has control over his data, etc, etc.. There are a lot of people here who appear to have very little experience with forum protocol, and how it all works.. Its going to be a leap to get them to enter the relevant data and use the sig feature.. Still, I think its worth it..  Mike is right; my idea about making it mandatory was heavy handed and not the approach that should be taken....

Charly, please provide a link, if you can, about the EASL info relative to the 8 weekers.  Im surprised to hear that talk is picking up regarding Harvoni 'response guided treatment' which is what it would be if on treatment labs are going to be recommended, and action taken based on those labs.. Because that thinking has definitely not, in the means, been part of Harvoni treatment.  What new data regarding the 8 weekers is tilting this 'new' thinking?  Obviously, what we'd want to know is, on a global basis, is there an unexpected increase in 8 weekers relpase rates that isnt correlating well with the trial data, and is that the cause of this 'new' thinking?  ... A link would be real helpful.

Thanks much...

Paul, I also posted this in the News and Research forum:

http://investorshub.advfn.com/boards/read_msg.aspx?message_id=112590793

Take this with a grain or two of salt.  Right now all we have is a brief synopsis of the EASL discussions.  The commentary is from what appears to be a knowledgeable investor.

""""REAL-WORLD EFFECTIVENESS OF LEDIPASVIR/SOFOSBUVIR 8 WEEKS CHRONIC HEPATITIS C TREATMENT (GILD probably used the 8 week in negotiations with payors, but what if there is a small but meaningful difference in efficacy?)

RESPONSE GUIDED THERAPY IS NOT DEAD: LOW SUSTAINED VIROLOGIC RESPONSE (SVR) RATES IN PATIENTS WHO HAVE DETECTABLE HEPATITIS C VIRUS (HCV) AT WEEK 4 OF TREATMENT WITH SOFOSBUVIR (SOF) CONTAINING REGIMENS (will 8 week regimens get converted to 12 weeks? will insurance companies allow this?) """

"""ASSESSMENT OF BASELINE VIRAL LOAD CUT-OFF FOR SHORTENED LEDIPASVIR/SOFOSBUVIR THERAPY BY WIDELY USED HCV RNA ASSAYS
Conclusions: A baseline viral load below 6 million (6.8 log) IU/ml was present in 59% of patients in the ION-3 registration trial and 40% in the present study based on HPS/CTM. However, measurements with CAP/CTM and ART, two assays widely used in the real-world setting, revealed that 86% and 90% of patients tested were, in principle, eligible to receive an 8-week treatment regimen. A substantial proportion of patients had fluctuating VL levels below and above 6 million IU/ml at different screening time points according to CAP/CTM that could potentially impact treatment decisions. (This is why i wouldn't want 8 weeks of harvoni if i were a pt) """

You can read the abstracts here:

https://events.easl.eu/EventProgramme/ILC2015/POSTER.aspx

[Bituman]

Maybe we could start a new thread/post under the header: "Member Lab Results and Progress." Members could post results under the thread, and, since we can edit/modify our own posts, each member could add new results/update status within their individual post. This would be a rolling/living thread.

Any thoughts?

Do it.  A standardized format might be helpful.   
Bob

[Pete]

I do like your idea Mike, make it so!  I too had some concern regarding the logistics around the anonymity piece.  But a Section for results only, no replies just the stats as we all progress through tx might would be worthwhile.  The other forum areas could of course still be used for questions, concerns, and/or encouraging comments.  We all need that positive feedback for for sure!  Ok, here's my shot at my histology.  Took me a while to find the subscript button ;-

Regards,
Pete

<sub>62 y/o male HCV 1a Detected 2002
Biopsy Score 2006 - F3 / F3
Treatment Naive
Diagnosed with Compensated Cirrhosis - Jan 2105

Dec 2014 Pre TX Labs:
ALT-145
AST - 122
V/L 4.6 million

3/9//15 - Started Harvoni 12 weeks
2 week labs - ALT 14 / AST 20
4 week labs - ALT 12 / AST 18  V/L 20 IU/ml
8 week labs
12 week labs</sub>