[johnt]

In a recent post Rick wrote about his research:

What I really need to do is to put it out as a wiki but the learning curve is so great. Sigh.....

I think all us citizen scientists have similar problems at one time or another:
How do you create a website?
What's the easiest way to draw graphs?
How can I do a statistical analysis?

Many of our problems are IT related and not specific to Parkinson's so don't really fit into posting here. And even if we do post here, we are missing a huge pool of external expertese.

Perhaps, as a start we should post more to the Computers and Technology forum:
http://neurotalk.psychcentral.com/forum36.html

But, I suspect that citizen science needs the equivalent of the water cooler: somewhere to chat, somewhere to pass on what you know and what you want to know.

Do you see this need?

What other infrastructure would you like?

John

[Aunt Bean]

I would like to get together in a real place and meet real people . Why don't you all come to Bean Acres and spend a week and we'll solve a lot with our heads put together.
Necessity is definitely "The Mother Of Invention"

[reverett123]

John-
I like your thinking and would like to discuss it more. I have built the website from scratch three times, getting more elaborate each time. Unfortunately, a disk crash a couple of years ago caught me with my backups down and I now have a collection of parts. But I do remember that it was pretty easy to set up a forum such as this one at NeuroTalk. That could be done easily. As to the individual pages, you use an html editor which is also pretty easy to use if you resist the lure of the fancier stuff.

I also have a pretty good domain that could serve as an umbrella for a lot of different things - "www.parkinsonsonline.org"

Look it over. Rick

Originally Posted by johnt

In a recent post Rick wrote about his research:



I think all us citizen scientists have similar problems at one time or another:
How do you create a website?
What's the easiest way to draw graphs?
How can I do a statistical analysis?

Many of our problems are IT related and not specific to Parkinson's so don't really fit into posting here. And even if we do post here, we are missing a huge pool of external expertese.

Perhaps, as a start we should post more to the Computers and Technology forum:
http://neurotalk.psychcentral.com/forum36.html

But, I suspect that citizen science needs the equivalent of the water cooler: somewhere to chat, somewhere to pass on what you know and what you want to know.

Do you see this need?

What other infrastructure would you like?

John

[Conductor71]

Thanks Rick for your dedication and hard work; I know how it goes. I have wanted to start a blog for some time now but cannot commit to it knowing that it will largely go unnoticed. Why bother, right? Well, I think you are ahead of your time and the scientific world does not want to see there are potentially answers already out there for whatever reasons.

Johnt suggested just what I have been thinking. We do need a common space for patient led research and hypotheses/theories, but I think we could stick with blog format for now.

I am thinking maybe it is not so much content but that you need some self promotion and to try Youtube to attract followers. I noticed just yesterday that many of our posts here end up promoted on Youtube with a video that correlates. Turns out to be a totally automated program that uses tags generated at neurotalk to rank topics and queue up related videos. I am thinking it might broaden your readership base if you did something similar but handpicking or making your own short videos. Other ideas are to see if you can't scare up a mini interview with one of the author/researchers who are onto the fetal LPS scene? All they can do is say 'no'.

just a few thoughts....

Laura

[johnt]

Aunt Bean,

I'd like a "real" meeting too, but I don't think I'll be able to make Tennessee. (I will be in Ottawa at the start of August. Is there anyone from near there?)

Anyone living in or visiting the UK is most welcome to visit me in Stafford, 135 miles north west of London.

---------------

Rick,

You've got a great domain name in www.parkinsonsonline.org and excellent material. You just need to tidy it up.

---------------

Laura,

You're absolutely right about the need to promote our efforts. You'd make a great Director of Communications.

I like your idea of using YouTube. That's a whole new set of skills to be learn. Do we have someone who knows the technology involved?

I couldn't find a recent topic from this forum which had been mirrored on YouTube. Do you have an example?

John

[Conductor71]

Originally Posted by johnt

Aunt Bean,

I'd like a "real" meeting too, but I don't think I'll be able to make Tennessee. (I will be in Ottawa at the start of August. Is there anyone from near there?)

Anyone living in or visiting the UK is most welcome to visit me in Stafford, 135 miles north west of London.

---------------

Rick,

You've got a great domain name in www.parkinsonsonline.org and excellent material. You just need to tidy it up.

---------------

Laura,

You're absolutely right about the need to promote our efforts. You'd make a great Director of Communications.

I like your idea of using YouTube. That's a whole new set of skills to be learn. Do we have someone who knows the technology involved?

I couldn't find a recent topic from this forum which had been mirrored on YouTube. Do you have an example?

John

John,

Thanks, now that you mention I just signed on to be the PD "director" of a new non-profit that will focus on creating awareness on orphan diseases and neurological disorders in general. It will be unique because patients will do so by sharing their stories and the medium will be visual either through video or film. A lot of us make videos but they seldom are seen outside of the PD community; we need to start going viral. Honestly, this is what generated those promotional ideas, so not entirely original. If anyone wants to be added to our newsletter or volunteer to see this take off, please PM me.

As for the Neurotalk connection on Youtube, we essentially have our own channel - note it is for all of Psychcentral, but I was surprised that many are from the PD group. Here is a link to the whole list; scroll and you may just see one of your own posts.

http://www.youtube.com/blogs/neurotalk-psychcentral

Rick,

I am trying to figure out a way to blog all the research I have done as well. Another thought I have is that instead of presenting everything we have in one exhaustive collection; we need to break up all the info and present it in smaller, more digestible "chunks". People like to follow blogs and expect regular, brief entries. Let's face it, some of us have a near encyclopedic knowledge of this stuff. I preface some of my more science based posts in Facebook with my "Rain Man" warning. I think we lose people because we overwhelm them. I am thinking of making a story of what I want to present and then sharing tidbits of important stuff as if I were discovering as I go along. We did find our research gradually, but presenting it as a whole after the fact works against us. Putting all that we know out there makes us more a static repository, not a dynamic convo hub.

We need a compelling human story to go along with this to draw people in. I am thinking it might be fun to team up and tell our stories along with what we uncover. We need to be a little less cerebral and a lot more visceral and connect with others-make it more human interest, not a scholarly tome that people will look at 20 years later and think "wow" if only had someone bothered to read it. If you would like to collaborate (we could co-blog) it would give a great YO perspective and show how differently or alike PD can be by gender. Let me know what you think. If anyone else is game, please feel free reply here or contact me.

Thanks!

Laura

[Conductor71]

Originally Posted by Aunt Bean

I would like to get together in a real place and meet real people . Why don't you all come to Bean Acres and spend a week and we'll solve a lot with our heads put together.
Necessity is definitely "The Mother Of Invention"

This reminds me...who will be at the WPC in October? It is Montreal this time around. I would love to meet in person. I plan to go.

Laura

[girija]

John, Rick, Laura et al.,

FYI. pcori might fund a virtual or real meeting for citizen scientists. I might be able to join you/help with this, depending on my health.
Girija
News Room Blog
June 17, 2013

We're pleased to introduce PCORI's Engagement Awards program, an important new funding initiative designed to grow a national community of patients, clinicians, researchers and other healthcare stakeholders who will help advance patient-centered outcomes research.



Our Engagement Awards will offer targeted funding to dozens of groups of patients, clinicians and other front-line caregivers, and others across the healthcare community who are interested in facilitating patient-centered outcomes research, or PCOR, but who traditionally have not been engaged in such research efforts. The program will support projects to enhance knowledge of PCOR and its benefits; training to foster partnerships between patients, other healthcare stakeholders, and scientists that can lead to research projects; and efforts to implement results of the research in clinical practice.



We got the idea for the Engagement Awards during our first patient engagement workshop, where we heard participants convey their desire for a clear path and support by which they could become real partners in the expansion and implementation of PCOR. The new program is a key way to encourage and tap into the passion and efforts of patients, family caregivers, advocacy groups, clinicians, and many others eager to see more research focused on answering the questions of most concern to them, and to determine the best ways to use PCOR to improve healthcare practice.



As the first step in the Engagement Awards initiative, we are investing up to $1.2 million for a training program to build research capacity and fund a series of Pipeline to Proposal Awards. The initial Pipeline to Proposal Awards of up to $15,000 each will help patients and other non-researchers begin to form groups capable of partnering with clinicians, researchers, and other healthcare stakeholders.



We've issued a Request for Quotes (RFQ) to identify five organizations with the experience and skills to serve as "Intermediate Funders" that will distribute Pipeline to Proposal Award funds and manage these awards. The deadline for interested parties to submit quotes is July 15.



You can read more about the Engagement Awards program and the RFQ in a new blog post by PCORI Chief Officer for Engagement Anne Beal, MD, MPH.

Upcoming Events
Board of Governors Meeting
Join us online for a special Board of Governors teleconference/webinar tomorrow, June 18 from 12-12:30 pm ET on Uterine Fibroids and Asthma Funding Announcements.



AcademyHealth Annual Research Meeting

This year's AcademyHealth Annual Research Meeting June 23-25 features several sessions on patient-centered outcomes research presented by PCORI leaders and staff. See the presentation schedule and come see us at Booth #207.
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June 19:
Letters of Intent Due for Data Network Initiative

Deadlines are 5:00 p.m. ET
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[johnt]

Girija,

Thanks for your post.

I've assumed that "patient-centered outcomes research" was about patients playing a part in the management of the research. A great aim.

Does PCORI's remit include helping to enable patients to DO research in addition to the existing scientists?

I would expect most of the work done by citizen researchers to be computer based and, in effect, free. But some work does involve costs. For instance:
- better access to academic journals;
- levodopa measurement;
- symptom measurement kits;
etc..

A nice consequence of getting a grant is that the official recognition might open some doors.

John

[Tupelo3]

Originally Posted by Conductor71

If anyone else is game, please feel free reply here or contact me.

Thanks!

Laura

This all sounds very interesting, and if done right, can be very helpful. I would be happty to help out if needed.

Gary