Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

[kan]

I have been sending private messages to historical users of this forum with this text:

Hi (username)!

Have you filled out the survey designed by awor and axolotl about your experience with post-finasteride syndrome? We need at least 500 people to fill it out for it to have some relevance for medical research. Until now 120 people have finished it.

It will only take you 15-20 minutes and if you stop in the middle of the process it can be saved for later.

Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate General Discussion

Hello everyone, Please participate in a Post-Drug Syndrome Survey We are requesting the participation of patients who have suffered persistent health damage following use and discontinuation of certain drugs and substances with endocrine-disruptive properties (listed below). NOTE: Current results can be found HERE. Members can access their personal survey when logged in via the bar graph icon at the top right of the page when browsing on a desktop or laptop computer: [image] New members can…

Thanks in advance and sorry for any inconvenience.

Kan

The users that I have contacted are basically the ones that have had more activity in the past. I checked the user list (https://forum.propeciahelp.com/u?order=post_count&period=all) and ordered it from the people that have written more replies to the people that have written less replies, so the users that have been more active throughout the years appear on top of the list.

I have messaged the top repliers of all time until @braziliandude, except those who I know that have already filled out the survey. If anyone wants to continue from there, feel free to copy the text of the message. But in case someone continues sending messages to the next members of the list, make sure to let others know by replying this topic, just to avoid sending two messages to the same users.

[Greek]

That’s great @kan, it’s worth pointing out that everyone got an email when the survey went live so they should have been informed.

Soon, people who have taken the survey will have a badge on their profile, so we can easily see and ask people posting here who haven’t yet taken the survey to do so.

[tenacity]

Hey guys, sorry for disappearing. I finished the survey. Much love and I appreciate the reminders.

[Northern_Star]

Great, thank you, tenacity! Please, ask your fellow PSSD sufferers to participate as well. The more participants, the more powerful is our data.

Also, big thank you to all those who keep reminding people, keep bumping threads and help people on the way. It’s good to see that many are pulling in the same direction. Keep it up!

[kan]

@Greek

everyone got an email when the survey went live so they should have been informed.

I feel like through the years we are losing the connection with people that was very active in the past. And obviously it is very normal that they want to forget about many of the things they went through and “disappear”, but we need to find a way to make people available again when they are needed, even if it is only to complete a survey or to participate in something once a year or whenever is needed.

Regarding this, I think this community has always been scared of collecting some personal data (something which is logical bearing in mind what we are talking about in this forum), but if things are done correctly, there would be no need to worry about anything. For example, if we had phone numbers of the members this would facilitate things a lot. Many people (myself included) have had problems with e-mails and many don’t even log in the forum anymore.

I am not saying that introducing one’s phone number should be mandatory when registering to the forum but maybe an optional box to write the phone number could be an option.

Just an idea, maybe there are other ways to “improve user’s loyalty” that can help us. We are more than 5,000 people in this forum and less than 200 have filled out the survey. We need to find a way to improve new users “loyalty”, as it is not the same to have 200 people to count with to having 5,000. Any ideas?

[Greek]

@kan

I feel like through the years we are losing the connection with people that was very active in the past. And obviously it is very normal that they want to forget about many of the things they went through and “disappear”, but we need to find a way to make people available again when they are needed, even if it is only to complete a survey or to participate in something once a year or whenever is needed

Yes, I agree. I don’t think asking for a phone number up front would (as you say) help with registrations, but a sense of community responsibility would help immeasurably. I only posted because I wanted you to know that sending a pm, at best (if people have emails switched on) will generate an email that may or may not be read, much as the survey mail out will have done.

On topic, I cannot understand the attitude of people who get better and disappear, but it seems that I’m in a minority, as many people say that they would do that very thing.

[lakehouse]

can we tag once a week instead of 2 weeks? @Greek @pvdl

there’s no reason not to.

[pvdl]

@lakehouse

there’s no reason not to.

It is not effective and probably counterproductive.

[lakehouse]

we should test it out before making that assumption

A/B tesitng

[kan]

@Greek

I only posted because I wanted you to know that sending a pm, at best (if people have emails switched on) will generate an email that may or may not be read, much as the survey mail out will have done.

Yes, sending a pm was just a “semi-desperate” call to participate.

My previous message was more a general answer to the whole thread, just asking if someone had any idea in mind to try to get the most of this community of 5,000 people. The phone number collection was just one suggestion, I am sure others may have other ideas in mind to get people to participate.

[Greek]

I think once we’ve got our participant badges, it’ll be a lot easier to motivate those who haven’t taken the survey to do so.

[axolotl]

@Greek

I think once we’ve got our participant badges, it’ll be a lot easier to motivate those who haven’t taken the survey to do so.

Very much so. There will be a visible blue tick at the bottom of avatars. However, as a more easy reference, users will simply be able to view the following group (currently empty). Once this is operational, if a user isn’t in the group, it means they haven’t completed the survey. Easy.

https://forum.propeciahelp.com/g/Completionists

I spent the past weekend working very hard with a programmer, and in addition to completely refactoring the existing under-the-hood system to get ready for the therapeutic records and test result surveys, he’s devised a system to place all completed survey participants in this group. Unfortunately he and I are busy at the moment as is @awor, so we need to coordinate some time to get stuff implemented. This might be a couple of weeks but we are working on it.

Also FYI guys, from hereon out try and keep this thread focused on questions about the survey or the FAQ as it’s long enough as is. Ideas and motivation stuff can be put in a new or existing thread. Thanks, and thanks so much to those encouraging people to keep taking it - it makes a practical difference. People have thanked us (and community members) for reminders quite often. It helps!

[Alex_Jaramillo]

I just joined here is there a way for me to complete the Accutane survey yet or does my account need to be active for a few months?

[axolotl]

Hi @Alex_Jaramillo, thank you. Please see the following explanation:

Have you signed up to take the post drug syndrome survey? This topic is for you

Hello! If you wish to take our post drug symptom survey, we want to say that we are very pleased to have you take part in this extremely important piece of research. This is a very simple guide. You can find more info in the first post of this topic: https://forum.propeciahelp.com/t/post-drug-syndrome-survey-faq-survey-now-live-please-participate Step by step guide: Sign up for a forum account (please choose an avatar too!) Create and post a member story. Tell us how you got here. Click this…

[taco301]

Hello, may I please be invited to partake in the survey? Thank you very much!

[Knifli]

Hi, thanks for joining the forum.
Please check out this post.

Have you signed up to take the post drug syndrome survey? This topic is for you

Hello! If you wish to take our post drug symptom survey, we want to say that we are very pleased to have you take part in this extremely important piece of research. This is a very simple guide. You can find more info in the first post of this topic: https://forum.propeciahelp.com/t/post-drug-syndrome-survey-faq-survey-now-live-please-participate Step by step guide: Sign up for a forum account (please choose an avatar too!) Create and post a member story. Tell us how you got here. Click this…

[Trump_1776]

Just submitted my survey. Best of luck to everyone

[lakehouse]

@Greek @axolotl

along with the participation badge, i suggest a “pop-up” for users that have no completed the survey, along with some text that compels them to finish it.

It would serve as a reminder EVERYTIME they login, and it would take less effort than tagging them.

I also want to look into incentive’s to motivate participation from facebook groups. Ive already recommended like a $100 gift card to a random winner, but there are so many ideas we can come up with if that doesnt work— FYI however based on my research I see no conflict.

At the very least I do strongly recommend looking into a popup reminder for users that haven’t filled out the surveys. that would optimize out of the people we currently have.

[lakehouse]

can anyone comment on this post? @Dubya_B @awor @Northern_Star

sorry to bother you guys, i know how busy mods are, but i genuinely think my inputs should be considered to expedite our process.

[axolotl]

Hi @Lakehouse,

Firstly, thanks for the thoughts. Yes, sadly we’re always swamped…Hopefully I’ll have more goods to show for my relative quiet soon.

The development work has been extremely time consuming - thousands of hours - and we just don’t have the resources. The development has been undertaken by myself, @awor and a personal friend, and his expertise and expended effort would cost well into five digits. My friend is very busy with his work and more work is not really going to be feasible unless strictly necessary. They have had more work to do on the extra systems that are launching soon (later than planned) because additional development was required. To do this we would need money to pay another developer, and it would be hundreds at least.

As those who have completed the survey will have a small tick on the bottom corner of their avatar, it should be easy for the group to identify people who have not completed it and thus remind them. I would suggest users make a templated message to PM users with to save time.

Although it is only pilot data, such incentives could raise questions regarding the quality of the data and we cannot offer them. The benefits of standardised data and the volume of the dataset (which is already a large cohort) should be enough motivation, one would hope. I would additionally be concerned about patients offering them as considering it would not be solely to people already invited, and encompass people signing up, anyone signing up would have the offer of possible monetary recompense. This would raise a real risk of non-patients seeking inclusion, so any user-driven incentive would have to come up with a way for this to be limited to already registered users.