PLAID: A New Open-Access Diabetes Journal Weaves in Patient Voices

http://type2diabetestreatment.net/diabetes-mellitus/plaid-a-new-open-access-diabetes-journal-weaves-in-patient-voices/

There"s a new diabetes journal on the block, but this one is much different from all the others out there.

While it is focused on research, the new PLAID Journal brings a fresh perspective not found in any traditional diabetes medical journals: real stories from people with diabetes (PWDs). Launched early this year, PLAID stands for People Living with And Inspired by Diabetes. And the man behind it is D-peep Martin Wood, a medical library director by trade who"s been type 1 for over 30 years, and many may recognize from his "Diabetically Speaking" blog in the Diabetes Online Community (DOC).

We are all about open-source, so are delighted to see this approach being embraced in the world of research journals, too! We talked with Martin recently about his own diabetes story and how it led to this new PLAID publication...

Q&A with Martin Wood on PLAID Journal

DM) Thanks for talking with us, Martin! First, can you briefly tell us how you personally got started with diabetes?

MW) I was diagnosed in May 1981, so it"s been more than three decades and we"ve changed everything about diabetes since then. The way we managed it back then was with meal plans, and this idea that everything you did should stay in a rut -- life was prescribed and there was no deviation. Now, life with diabetes is a lot more flexible. In many ways that"s an improvement, but it brings up new challenges. Those challenges that we all live with are why we created PLAID.

How did PLAID come to be?

Being the director of the medical library here at Florida State, I"m very aware of what"s being talked about in the diabetes academic journals. I"m looking at what"s being researched on a regular basis. What was bugging me was that I didn"t see in those journals the real things I was living with and that affect me and my friends with diabetes. That reality wasn"t represented in the academic literature, and I really wanted to see our stories being showcased -- our needs being addressed. The things that are important to us, the real people in the Diabetes Community, need to be represented in academic research.

So what do you do when you look around and can"t find what you"re seeking? You go off and create it yourself, of course!

How exactly is the format different from other diabetes journals?

This isn"t just a research journal. It"s putting research into perspective, including and encouraging that rich dialogue between healthcare professionals and people with diabetes. We work to include personal insights from individuals -- family, friends, colleagues, co-workers, advocates, healthcare professionals and researchers. It"s about creating solutions to the problems we see in our diabetes worlds.

For example in the first 56-page journal, PLAID included "audience perspectives" relating personal stories from PWDs, D-parents, and healthcare professionals about their views on communication and diabetes. That section features three research articles on the topic, including the patient and provider perspectives, and also a list of other research and articles on the same topic in order to move the conversation forward. We also include helpful quick-guides and Q&As that patients can use in talking about diabetes with providers.

That"s PLAID. It"s the only journal I"ve come across that really embraces both the research and patient perspectives in one place.

Is it print or online, or both?

The PLAID Journal is predominantly an electronic journal, and it"s available in multiple digital formats. My favorite way to read it is on the PLAID website. We"re also on Facebook. We also publish a limited print run of each issue, which is used to help us market the journal and feature it at conferences and other face-to-face opportunities that we have to reach people. We will be at the ADA Scientific Sessions in New Orleans this coming June.

What went into naming this journal... (was it your fondness for wearing plaid, by chance)?

That"s how I became known in the Diabetes Community. Fellow blogger Scott Strange (from Strangely Diabetic) and I always got busted wearing plaid shirts. And it just became a kind of shtick, honestly. Every time I was in a picture or somewhere diabetes-related, I happened to be wearing plaid. So, it kind of appealed to me and that"s the kind of personal stamp I wanted to put on this journal.

But when I was building this journal and working on a name, my team and I were really talking about the meaning of colors. In different industries, you have the red journal, the blue, green, grey... so many of these journals are referred to by their slang color. The Annals of Internal Medicine is well-known, and that"s referred to by internists as the "green journal." So, I wanted to play off it. That"s an easy way for people to remember something. We settled on the PLAID journal because there isn"t one already. And we made an acronym out of it, to associate something positive with PLAID and know what it"s about -- for and by people with diabetes, and especially those who are inspired by diabetes.

Are you doing this on your own time or as part of your job at Florida State?

My blog Diabetically Speaking was something I"d been doing on my own time. That has evolved into this. I am editor-in-chief of this journal and it"s now part of my job duties here at Florida State University. It is sponsored by the university, specifically the FSU College of Medicine and our Charlotte Edwards Maguire Medical Library where we"re publishing. I"ve been able to shape it so it"s part of my job. We have four people on the editorial team, and 10 on the editorial board -- including well-known people in the DOC like Korey Hood, Nicole Johnson, Kerri Sparling, and Joe Solowiejczyk. At present, four of our board members have T1D -- including one endo with type 1, and one researcher with T2D.

The mission of our college is to provide care to the underprivileged and underserved, and I can"t think of an audience more in need of that service than those of us with chronic conditions -- diabetes included. We"re so often overlooked and blamed for our condition, that we"re forced to go without the things we truly need to live well. I have to applaud our college of medicine here for making that part of the mission statement, and PLAID fits right into that mission. It"s a big reason why it became part of my job, because it"s such a public way to acknowledge that mission statement.

Do you charge any subscription fees?

We are peer-reviewed at the same level as every other leading academic and scientific journal. The only differences being: We are open access, so we do not charge ANY subscription fees, and never will, because it’s most important that all people in our target audience have access to the research being published. And because we have such a strict peer-review policy and want the best research that appeals to our target audiences, we do not charge author fees for original research accepted for publication.

It"s not easy, because these journals have to make money to survive. You"ve got to make money to continue producing content. We are very fortunate being part of Florida State, a research institution that is willing to support the publication.

Besides not charging fees, what do you mean specifically by "open-access journal"?

Open access started out as this movement to, in effect, stick it to the publishers who were charging way too much money for access to research articles. That"s well and good, but the way we choose to make PLAID open-access is more focused on breaking down barriers to the information. I don"t want researchers at other universities, hospitals or clinics who need this information to not be able to get it because of some silly subscription fee. I also didn"t want those of us living with diabetes, who mostly are not connected with research institutions, to have those barriers to the information either. I wanted all of us to be able to have the same conversations.

I really look forward to the day that a person with diabetes, or a mom or dad, can go to their physician and say, "Doc, I found this in the PLAID Journal." And the doctor will respond with, "That"s a good find," and they can talk about it. And not say, as so many doctors do today, with "Oh, shame on you for finding that on the Internet."

Quality and peer-review is very important to us, and we want the kind of prestige that other journals have, but I don"t want the exclusivity that means barriers to the information that would-be readers often run into.

What challenges have you faced with this?

One challenge we’ve had, being a new journal, is getting on the radar of researchers so that they think of PLAID when they are evaluating peer-reviewed journals to submit their research to for publication. We have a fully respectable "double-blind" peer review process, and it"s something we want researchers to know about.

Each issue hones in on a particular theme or topic, right?

Yes, we do have themes. Our very first issue in the Spring was about communication, really all about how we talk about diabetes. And our Fall issue that we"re working on is about pregnancy, family planning and diabetes.

Then our next Spring (2016) issue will be about Insurance, healthcare policies, and the costs of living with diabetes. The next Fall issue will be about technology and diabetes -- and we really hope to focus on the research involved with closed-loop systems. We are really trying to focus on the things that you, me and our patient peers are talking and thinking about.

So you only publish twice a year?

Yes, right now as a startup journal, we are publishing twice a year. Eventually we"d like to be quarterly. We"ve had one issue issue already, our Spring Edition, and our upcoming Fall issue planned for December.

We want to make this relevant, so I don"t mind that we don"t publish every month. I want folks to be able to pick up a copy of this journal, and get a feel for a certain topic or theme that people are talking about and what"s going on in that area. So not every issue will appeal to the same group of people in the Diabetes Community. But the idea is that anyone can pick this up and find something relevant.

Of course, we welcome submissions. All the information on that can be found at our website.

What"s the reaction been so far?

So far, extremely positive. We"ve heard that a lot of people appreciate the patient perspectives alongside the research, and I think that"s something that really does come from my blogging about diabetes. In the first issue, people told us that helped "color the research" and give them more perspective on what was being reported. To me, that"s good news. That means our voices are being heard and they"re connecting the dots.

Research articles are hard to read, let"s be honest. They are often written at a graduate or doctorate reading level, and they use and structure words that are different from how we talk. For the average person, they"re tough to digest. So I think what the PLAID Journal is doing, is it"s providing something for everyone. It"s presenting information that the layperson can understand, but also providing something for clinician and researcher at a level they can understand. We"re connecting those dots.

It"s fascinating to patients like yourself using their professional roles to really highlight the voices of those living with medical conditions...

Yes! There are more and more of us who were diagnosed with type 1 as kids, and now we"re getting into professional positions where we can influence what is being said about diabetes and what we want to see happen in the world. It"s encouraging to see these new ideas of creating something from nothing in so many ways. You can attribute some of that to social media and our online connections, but really I chalk it up to just good old-fashioned ingenuity, creativity and imagination -- people who are just willing to say, "You know what? There"s something I need and it doesn"t exist, so I"m going to create it." I really do applaud our Diabetes Community for taking that on, and having the courage to put new ideas out there.

Thanks for what you"re doing, Martin! We love the idea of PLAID and can"t wait to see the next issues once they"re ready for prime time.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn"t adhere to Healthline"s editorial guidelines. For more information about Healthline"s partnership with Diabetes Mine, please click here.

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