Let's help Dr. Wise and the Rutgers Team!

[Daveman]

Hi Nightingale,

I think for now, the quickest form to start gathering information is through the Polls section.

In a post I made, I mentioned how we should put some thought into the poll questions. Break a theme into several questions with clear and susinct answers. Try to focus the questions around what the research team would most like to know.

I'll try in the next little while to start some polls. But I am very, very busy, I'm not sure how I'm getting the time to even write this post.

I know one or two of our members have offered to write some code. But we have done that, and frankly with all the spammers and hackers, it's a pain in the butt trying to keep that results clean.

I'm sure technically oriented people could manage that, but it's time cosuming and for now I feel thepolls route is the fastest and cleanest.

[Nightingale]

Firstly, some of this data is obviously available on the forms from the 15 or so who applied into the study

I feel I need to explain better. The data from the forms is known, collected and definitely not lost. What is not known, and what is so important that I'm trying to spearhead action here is that the Rutger's team has never seen POIS. They don't know how it looks like over time. They have our list of symptoms, but when do they all start for everyone? And when do they end? Start all together? Not all together? Some immediately? Some later? They all end together? Or some before others?

These questions were not part of the forms. That's what I am trying to help Dr. Wise find, and I think it's a reasonable request. Nothing has been lost that we turned in. It was just communicated to me (understandably later than we were all assuming and hoping) that we would help the research team even more if we got this information together. Dr. Lakshimn left. Dr. Wise is new to the project, but she's absolutely determined to help. I've seen it. But there's a lot she is trying to catch up to. I'm sorry if I've made it seem like the team is incompetent or demanding. I just had an hour to talk to Dr. Wise and jumped into action.

Please ask if you have a concern, now is the time to bring it up. And I guarantee you, Dr. Wise will be upfront about it. She was nothing less when we spoke.

[demografx]

Nightingale, your dialogue with Dr Wise is really reassuring!

[BluesBrother]

I think for now, the quickest form to start gathering information is through the Polls section.

I'm sure technically oriented people could manage that, but it's time cosuming and for now I feel thepolls route is the fastest and cleanest.

Daveman, I understand your concerns, but I think we can manage to set up a form quickly. I looked into wufoo, a service to manage and set up online forms - I made some progress today and I am confident that we can have something up and running in a week from now. If you think we need it even faster, let me know. I think it is better if there is single form which users need to fill in, rather than several poll sections. When it comes to the spam issue: we could distribute the link to the form via email to the forum members - like that, spam should not be more of a problem than it is with polls.

[Daveman]

I think for now, the quickest form to start gathering information is through the Polls section.

I'm sure technically oriented people could manage that, but it's time cosuming and for now I feel thepolls route is the fastest and cleanest.

Daveman, I understand your concerns, but I think we can manage to set up a form quickly. I looked into wufoo, a service to manage and set up online forms - I made some progress today and I am confident that we can have something up and running in a week from now. If you think we need it even faster, let me know. I think it is better if there is single form which users need to fill in, rather than several poll sections. When it comes to the spam issue: we could distribute the link to the form via email to the forum members - like that, spam should not be more of a problem than it is with polls.

If we do it through Wufoo, one thing is absolutely essencial. that each and every question is directly derived by Dr. Wise and their need, and each and every answer needs to be received by them exactly as it came in, without catagorization or pre-screening or grouping.

We chose a NORD program because we want and need a fresh professional evaluation of POIS without the opinions and biases of the multiple scenarios that have come before, which has led our community round in circles for over 7 years.

What Dr. Wise needs are facts. We can talk about our beliefs here on the forum. And there are as many as there are individuals. Our individual  beliefs may help the Doctors understand how we feel, they may give insight into the disease, and we can share those as we like on this forum, but a form or survey is not the media through which one expresses their beliefs. (Not saying that this is your desire) Just that it will need to be one of the factors taken into account in any creation of any questionaire to be presented to Dr. Wise.

Before creating form content, lets look at specific unbiased formulation of the questions that Dr. Wise needs.

More important than the type of media or questionaire is it's content, and nobody has focused on assuring that this is what is needed.

[BluesBrother]

If we do it through Wufoo, one thing is absolutely essencial. that each and every question is directly derived by Dr. Wise and their need, and each and every answer needs to be received by them exactly as it came in, without catagorization or pre-screening or grouping.

We chose a NORD program because we want and need a fresh professional evaluation of POIS without the opinions and biases of the multiple scenarios that have come before, which has led our community round in circles for over 7 years.

What Dr. Wise needs are facts. We can talk about our beliefs here on the forum. And there are as many as there are individuals. Our individual  beliefs may help the Doctors understand how we feel, they may give insight into the disease, and we can share those as we like on this forum, but a form or survey is not the media through which one expresses their beliefs. (Not saying that this is your desire) Just that it will need to be one of the factors taken into account in any creation of any questionaire to be presented to Dr. Wise.

Before creating form content, lets look at specific unbiased formulation of the questions that Dr. Wise needs.

More important than the type of media or questionaire is it's content, and nobody has focused on assuring that this is what is needed.

I agree with what you are writing. Let me quote myself:

I think it would be good to set up a questionnaire, and do so in coordination with Dr. Wise / Prof. Komisaruk (would be a pity if we missed out on items they find very important).

I would like to stress again that it is my foremost intention to support the research at Rutgers - and I believe that by collecting information in a structured way, we can contribute to a better understanding of POIS, thereby supporting Dr. Wise and Prof. Komisaruk. I do not favor one theory of POIS over another and completely agree that questions should be formulated as neutrally as possible. How do we continue from here?

[BluesBrother]

I have created a dummy survey - just for demonstration puposes. For now, I have only included a couple of fields. Everything, including layout, choices, questions, entries can be discussed and coordinated with the research team (and the forum members). Concerning spam, I have included the forum nickname as a required field - and no duplicates are allowed for this field, which should largely address the spam issue. Moreover, the form can be password protected, and we could send out the password in the email.

Please check out the form here https://pois.wufoo.com/forms/pois-testsurvey/ and feel free to play with it.

[demografx]

I think for now, the quickest form to start gathering information is through the Polls section.

I'm sure technically oriented people could manage that, but it's time cosuming and for now I feel thepolls route is the fastest and cleanest.

Daveman, I understand your concerns, but I think we can manage to set up a form quickly. I looked into wufoo, a service to manage and set up online forms - I made some progress today and I am confident that we can have something up and running in a week from now. If you think we need it even faster, let me know. I think it is better if there is single form which users need to fill in, rather than several poll sections. When it comes to the spam issue: we could distribute the link to the form via email to the forum members - like that, spam should not be more of a problem than it is with polls.

If we do it through Wufoo, one thing is absolutely essencial. that each and every question is directly derived by Dr. Wise and their need, and each and every answer needs to be received by them exactly as it came in, without catagorization or pre-screening or grouping.

We chose a NORD program because we want and need a fresh professional evaluation of POIS without the opinions and biases of the multiple scenarios that have come before, which has led our community round in circles for over 7 years.

What Dr. Wise needs are facts. We can talk about our beliefs here on the forum. And there are as many as there are individuals. Our individual  beliefs may help the Doctors understand how we feel, they may give insight into the disease, and we can share those as we like on this forum, but a form or survey is not the media through which one expresses their beliefs. (Not saying that this is your desire) Just that it will need to be one of the factors taken into account in any creation of any questionaire to be presented to Dr. Wise.

Before creating form content, lets look at specific unbiased formulation of the questions that Dr. Wise needs.

More important than the type of media or questionaire is it's content, and nobody has focused on assuring that this is what is needed.

Thanks, Daveman!

[Nightingale]

I have created a dummy survey - just for demonstration puposes. For now, I have only included a couple of fields. Everything, including layout, choices, questions, entries can be discussed and coordinated with the research team (and the forum members). Concerning spam, I have included the forum nickname as a required field - and no duplicates are allowed for this field, which should largely address the spam issue. Moreover, the form can be password protected, and we could send out the password in the email.

Please check out the form here https://pois.wufoo.com/forms/pois-testsurvey/ and feel free to play with it.

This looks really great. The format is excellent, straightforward. I'm a big fan of Quantum's clusters. That would be where I will start.

How does Wufoo collect the info for sifting thru later? Would you be able to give Dr. Wise direct access to the Wufoo account you used to make this? She'd be able to see results directly, and live, right?

[BluesBrother]

This looks really great. The format is excellent, straightforward. I'm a big fan of Quantum's clusters. That would be where I will start.

Thanks, Nightingale!

How does Wufoo collect the info for sifting thru later? Would you be able to give Dr. Wise direct access to the Wufoo account you used to make this? She'd be able to see results directly, and live, right?

Yes, that will be possible!

[Daveman]

Well Wufoo it is then, although from all that I see, a simple polls thread would accomplish the same.

I suggest Quantums thread would be a good place to discuss details pertaining to the questionaire. Surveys, polls and questionaires often don't give much room to discuss details of an answer. So in the accompanying thread we can elaborate, potentially providing the opportunity to communicate nuances of any theme.

There we can potentially coordinate to generate pertinent questions or discuss areas we feel might be missing. We must remember what the primary goal is, to gather more extensive data over symptom onset and progression.

[BluesBrother]

Well Wufoo it is then, although from all that I see, a simple polls thread would accomplish the same.

The polls can only give sample averages (e.g. which fraction of people suffers from a certain cluster of symptoms). The form allows us to also investigate correlations (e.g. if a person suffers from one cluster of symptoms, what is the probability that he suffers also from a different cluster of symptoms). Moreover, the form allows us to discover whether there is a hierarchical structure of symptoms (e.g. symptom A implies that symptom B is also present, but not the other way around). Correlations between symptoms and hierarchies of symptoms may be very important to advance our understanding of POIS.

In addition, the form allows us to ask for background information such as age, age at the time at which the symptoms were first experienced. Also, we can include comment fields in which people can elucidate on their answers - and in contrast to the polls comment section, these comments can be linked to other answers in the form.

I suggest Quantums thread would be a good place to discuss details pertaining to the questionaire.

Good suggestion!

Surveys, polls and questionaires often don't give much room to discuss details of an answer. So in the accompanying thread we can elaborate, potentially providing the opportunity to communicate nuances of any theme.

Could you explain what exactly you mean here? When it comes to giving survey respondents space to explain their answers, we can accomplish this in the questionnaire by including comment fields. If your statement instead refers to the discussion about how to design the questionnaire, I agree.

There we can potentially coordinate to generate pertinent questions or discuss areas we feel might be missing. We must remember what the primary goal is, to gather more extensive data over symptom onset and progression.

Sounds good!

[demografx]

Dear Forum,

Dr Nan Wise here!

I am making significant progress interviewing some wonderful gentlemen who have already volunteered for the study.  These phone and SKYPE interviews have been giving the team lots of food for thought.  There is nothing like going into a deep, open-ended conversation to develop a more nuanced perspective on the syndrome.  Dr Barry and I have been discussing the information I have been gathering in these interviews--and how this relates to some of our ideas about the syndrome. 

The heart rate variability equipment has arrived. Dr Barry is becoming acquainted with the computer programs which analyze the output.  We should be ready by April to bring in some of the gentlemen who live locally to begin the lab-based part of the study.

Thank you for your patience.  I have tremendous respect for all of you and empathy for how much POIS affects your lives.

Warmly,
Dr Nan

Thank you, Dr. Wise!


     

[Quantum]

Well Wufoo it is then, although from all that I see, a simple polls thread would accomplish the same.

I suggest Quantums thread would be a good place to discuss details pertaining to the questionaire. Surveys, polls and questionaires often don't give much room to discuss details of an answer. So in the accompanying thread we can elaborate, potentially providing the opportunity to communicate nuances of any theme.

There we can potentially coordinate to generate pertinent questions or discuss areas we feel might be missing. We must remember what the primary goal is, to gather more extensive data over symptom onset and progression.

Hi Daveman, Nightingale, BluesBrother, and everyone,


Three weeks ago, I have created and posted 3 polls in order to gather data for Dr Wise and the research team.  I agree that there would have been some other way to get more details and more data, but currently, it looks like the POIS study has already begun, and that no other online survey or else seems to be worked on ( no post on the forum about this in the last 2 weeks, anyway).

On the other hand, my polls, already up and running, may not be perfect, but some interesting data is much better than no data at all.  And, after 3 weeks, only 17 members have been answering my 3 polls.  I am sure more members can take a few minutes and answer these 3 polls.

Unless someone tells me that an online survey or questionnaire is almost ready and will be up in running in the following weeks, I think the data will come a little late for the research team.  As I have perceived Dr Wise needs ( but I may be wrong), I feel it was about having some quick data to help the team getting to know POIS a little more before getting in more important parts of the study.   I think that the time needed to put something else up, and stimulate members after that, this information may come a bit late.

Even by using the polls already posted on the forum, if we judge by the current lack of participation, it may take several months before obtaining a large  and significant number of answers.

Does anybody know about the timeline Dr Wise had in mind when asking about symptoms survey, time of onset and duration, and about POIS patterns?  If this was in terms of a few months, and that already one month has passed, I suggest we go along with the polls I have created, and that we find a way to reach members and stimulate them to answer those 3 already existing polls.  Otherwise, we might miss the boat.

What is your opinion?

And, if you are ok with using the polls I have already posted on the forum, what are the possible options in order to reach members and encourage them to participate and answering the 3 polls?
 

[Colm]

Even by using the polls already posted on the forum, if we judge by the current lack of participation, it may take several months before obtaining a large  and significant number of answers.



What is your opinion?

And, if you are ok with using the polls I have already posted on the forum, what are the possible options in order to reach members and encourage them to participate and answering the 3 polls?

Hi Quantum,

One of the issues with the forum. I was pretty certain I read all new posts, but I have no memory of seeing your link to the new poll. I have looked back at your previous posts, and can't see anything either.

Could you re: post it or post the link here and I will certainly contribute.

[Quantum]

Even by using the polls already posted on the forum, if we judge by the current lack of participation, it may take several months before obtaining a large  and significant number of answers.

What is your opinion?

And, if you are ok with using the polls I have already posted on the forum, what are the possible options in order to reach members and encourage them to participate and answering the 3 polls?

Hi Quantum,

One of the issues with the forum. I was pretty certain I read all new posts, but I have no memory of seeing your link to the new poll. I have looked back at your previous posts, and can't see anything either.

Could you re: post it or post the link here and I will certainly contribute.

Hi, Colm

Thanks for pointing this out to me.  I did not realized how easy it could be to miss some posts on this forum.  Personnally, I have to use both the recent posts link ( http://poiscenter.com/forums/index.php/action=recent, which is not known by everyone, I suppose), and the RSS feed of this forum ( http://poiscenter.com/forums/?action=.xml;type=atom ), because the RSS feed shows only the last 5 posts ( I tried to increase this to maybe the last ten posts, but did not find how, it's maybe server side, I am not very knowledgeable about RSS feeds).


So, here are the links for those 3 polls:


Poll #1, about onset of symptoms: http://poiscenter.com/forums/index.php?topic=2033.0

Poll #2 , about duration of symptoms: http://poiscenter.com/forums/index.php?topic=2034.0

Poll #3 , a survey on POIS symptoms: http://poiscenter.com/forums/index.php?topic=2035.0



This will help you, and any other member, to get directly to the polls.

I think it may be a good idea to post these links in other forum sections as well, since this research section is not the most visited.

Thanks again!

 

[Nightingale]

Hi everyone,

I've got a special thing to show you all that BluesBrother and I have completed: https://pois.wufoo.com/forms/your-pois-history/

This is a test survey created using form #7a and #7b from the Rutgers application. I showed Dr. Wise on Wednesday and she was very excited and said she would be showing it to Dr. Komisaruk who she believed would be thrilled. I haven't heard back yet about word from Dr. K, but since Dr. Wise is very much in support of this being created I don't think we need to abandon this effort to get a data from a survey.

Wufoo, the website BluesBrother and I used to create this, is very streamlined and powerful. Go ahead and take a look. You can complete the survey if you want. It may change if Dr. K or Dr. Wise decide they want more questions to be added. At this point, I believe they should be the ones to decide which questions to add. This takes our opinions out of it and puts the control into the teams hands, as it should be.

On the matter of low numbers of people filling this out, I believe there are many reasons for this, but the main one is the difficult nature of finding things on this forum as well as the design does not lend itself well to surveys of the detail that we need. Wufoo is one link, and a powerful website that the team (who has an account to access or edit the survey) can directly access results from.

So, check it out. Daveman, if you are reading this, let me know about if we could send an email with this survey out to your collection of member emails. I'll PM you too

[Prancer]

Very nice! I like the survey, and I'll be filling it out sometime soon for sure. Thanks Nightingale!

[Quantum]

Thanks to Nightingale and BluesBrother for their work! 

I will wait to see if the Rutgers team asks for changes before answering the survey.

[Stef]

VERY NICE SURVEY, BluesBrother and Nightingale!! :-)

It will be interesting to hear the Rutgers team's thoughts about it. They might develop more questions as they progress with interviews and with the actual study.

It's obvious that you've given this a lot of thought while staying objective -- not an easy task.

Great job!


Best wishes,
Stef