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research

From elsewhere: Patient-Centered Outcomes Research Institute to Invest Up to $68 Million to Develop a National Patient-Centered Clinical Research Network | Patient-Centered Outcomes Research Institute

Today, in an open, live-streamed webinar, PCORI —the Patient-Centered Outcomes Research Institute —made a big announcement. Executive Director Joe Selby, MD started with a reflective observation:We went in thinking this would be about clinical research. We came out realizing it was about patient networks. 

I've been calling 2013 the year of the ePatient and I'd say today's announcement from PCORI further validates the assertion.

This funding and focus paves the way for online communities, ePatient groups, disease-specific groups, healthcare providers and even payors to gain funding to for their own evidence-based research. That is, in turn, critical in validating some of the intrinsic and immediately observable benefits of patient communities and patient-identified therapies.

From PCORI:

 

Two innovative features of this initiative are

PCORI’s expectation that health systems, clinicians and patients will play key roles in governing the direction and uses of the networks that this funding will support, and that the interests of patients will be central to decision-making about the network’s structure, function, and uses.

 

 

via Patient-Centered Outcomes Research Institute to Invest Up to $68 Million to Develop a National Patient-Centered Clinical Research Network | Patient-Centered Outcomes Research Institute.

More on glycerine and psoriasis

\Last week, I wrote about my experience treating psoriasis with inexpensive vegetable glycerine. I want to briefly follow up on things I’ve since learned, some comments and some questions.

The Research

The folks on the Inspire forum are amazingly helpful (a hallmark of any ePatient community!). I’ve was pointed to BrianFH who is believed to be the progenitor on the topic.

In this post, BrianFH lays forth his hypothesis on why glycerin is effective in treating psoriasis.

Many of the early posts on Inspire related to glycerin point to a few key journal articles and news sources.

News Sources

Academic Articles

Most of the research in the field seems to come from Wendy Bollag, PhD, a cell physicist at the University of Georgia.

Dr. Bollag has published several articles on glycerin and skin, including a few in which she speculates on its success in treating psoriasis.

  • Qin H, Zheng X, Zhong X, Shetty AK, Elias PM, Bollag WB. Aquaporin–3 in keratinocytes and skin: Its role and interaction with phospholipase D2. Arch Biochem Biophys. 2011 Jan 26.
  • A potential role for the phospholipase D2-aquaporin–3 signaling module in early keratinocyte differentiation: production of a phosphatidylglycerol signaling lipid. Bollag WB, Xie D, Zheng X, Zhong X. J Invest Dermatol. 2007 Dec;127(12):2823–31. Epub 2007 Jun 28.

Why is this information so hard to find?

This is still the most disconcerting part for me. In fact, I’m writing these posts largely as an attempt to increase awareness for others who may be searching for low-cost, low-risk, effective psorasis treatments.

The lack of a real, reputable study on the use of glycerin to treat psoriasis was discussed on Inspire. The thread’s author reports on an email exchange with Dr. Bollag.

“We are in the process of preparing a manuscript for submission on some additional research on this project but it probably won’t be out for many months still (depending on how kind or unkind the reviewers are). In the meantime, we published a review article discussing the evidence for the importance of glycerol, and more particularly its transporter aquaporin–3, in healthy and diseased skin. Anecdotally, I have heard from several individuals of the benefits of glycerol, which can be obtained from a pharmacy or from a crafts store like Michael’s (glycerol, otherwise known as glycerin, is an ingredient in cake icing). Thank you for letting me know about this thread–I will go take a look. Interestingly, I have applied several times to NPF to study this idea and have always been declined for funding.”

That last sentence gives many, including me, heartburn.

Placebo Effect

Without a reputable, reproducible study in a peer-reviewed journal, any success with glycerine and psoriasis is simply a placebo effect. Or at least that’s how it will be received by naysayers and skeptics. Even worse, it will not make its way in front of doctors.

In healthcare, physicians and wonky administrative types (like me) tend to favor evidence based medicine —doing what reproducible, peer-reviewed literature shows to be effective. That’s why we need a study for this $4 internet cure.

Follow the funding?

I’m pretty cynical. But I’m not sure I totally buy the notion research goes unfunded because there’s no money in the cure. Regardless, I wonder if this is a case where the community should crowdsource the trial.

More on glycerin and psoriasis

Last week, I wrote about my experience treating psoriasis with inexpensive vegetable glycerine. I want to briefly follow up on things I’ve since learned, some comments and some questions.

The Research

The folks on the Inspire forum are amazingly helpful (a hallmark of any ePatient community!). I’ve was pointed to BrianFH who is believed to be the progenitor on the topic.

In this post, BrianFH lays forth his hypothesis on why glycerin is effective in treating psoriasis.

Many of the early posts on Inspire related to glycerin point to a few key journal articles and news sources.

News Sources

Academic Articles

Most of the research in the field seems to come from Wendy Bollag, PhD, a cell physicist at the University of Georgia.

Dr. Bollag has published several articles on glycerin and skin, including a few in which she speculates on its success in treating psoriasis.

  • Qin H, Zheng X, Zhong X, Shetty AK, Elias PM, Bollag WB. Aquaporin–3 in keratinocytes and skin: Its role and interaction with phospholipase D2. Arch Biochem Biophys. 2011 Jan 26.
  • A potential role for the phospholipase D2-aquaporin–3 signaling module in early keratinocyte differentiation: production of a phosphatidylglycerol signaling lipid. Bollag WB, Xie D, Zheng X, Zhong X. J Invest Dermatol. 2007 Dec;127(12):2823–31. Epub 2007 Jun 28.

Why is this information so hard to find?

This is still the most disconcerting part for me. In fact, I’m writing these posts largely as an attempt to increase awareness for others who may be searching for low-cost, low-risk, effective psorasis treatments.

The lack of a real, reputable study on the use of glycerin to treat psoriasis was discussed on Inspire. The thread’s author reports on an email exchange with Dr. Bollag.

“We are in the process of preparing a manuscript for submission on some additional research on this project but it probably won’t be out for many months still (depending on how kind or unkind the reviewers are). In the meantime, we published a review article discussing the evidence for the importance of glycerol, and more particularly its transporter aquaporin–3, in healthy and diseased skin. Anecdotally, I have heard from several individuals of the benefits of glycerol, which can be obtained from a pharmacy or from a crafts store like Michael’s (glycerol, otherwise known as glycerin, is an ingredient in cake icing). Thank you for letting me know about this thread–I will go take a look. Interestingly, I have applied several times to NPF to study this idea and have always been declined for funding.”

That last sentence gives many, including me, heartburn.

Placebo Effect

Without a reputable, reproducible study in a peer-reviewed journal, any success with glycerine and psoriasis is simply a placebo effect. Or at least that’s how it will be received by naysayers and skeptics. Even worse, it will not make its way in front of doctors.

In healthcare, physicians and wonky administrative types (like me) tend to favor evidence based medicine —doing what reproducible, peer-reviewed literature shows to be effective. That’s why we need a study for this $4 internet cure.

Follow the funding?

I’m pretty cynical. But I’m not sure I totally buy the notion research goes unfunded because there’s no money in the cure. Regardless, I wonder if this is a case where the community should crowdsource the trial.