The Vasculitis Patient Powered Research Network

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I met with the Vasculitis Patient Powered Research Network group I was assigned to yesterday which was our third meeting of the Vasculitis Patient Advisory Council or V-PAC. We essentially are given the task of adding a patient-centric spin on what the other working groups come up with, we make the website and process of getting this research done easier for other patients. Why am I talking about this you ask? Simple to promote registration in the V-PPRN and Patient registry with the VCRC or Vasculitis Clinical Research Consortium once our website is released.  The V-PPRN is a collaboration between the VCRC and the VF or Vasculitis Foundation. Here I’d like to discuss the V-PPRN and why it’s absolutely crucial that as many of us vasculitis patients and caregivers register as possible.

The V-PPRN gives a unique opportunity to add your personal information to a widespread collection of vasculitis patient data allowing emerging researchers to look for trends in a huge sample of data. The more of us that participate the more successful the research will be and therefore the sooner we as patients will be able to procure medications specific to vasculitis and NOT repurposed epilepsy medication etc. I don’t know about you but personally I feel insignificant when a medication is repurposed it shows me the medical world doesn’t care enough to create a new compound specific to my issue. I have a dream of several vasculitis medications coming into existence since we need options in case someone is allergic to one of them, but these medications would absolutely be better than the repurposed ones currently in use. I’d like to see an infusion similar to chemotherapy but as harmless as Rituxan can be, which is essentially inactive when it comes to having side effects since it isn’t well known for them. That’s the type of infusion I care for, one geared specifically towards diseases like Wegener’s and Churg Strauss Syndrome or Eosinophilic Granulomatosis. Lastly we need to have something developed that’s mean, a true vasculitis obliteration medication, even if it is as hard on the body as a max dose of cytoxan those of us that would need this treatment have already been through all of the “worst” meds and would benefit. Either way a patient in my situation has nothing to lose, we really only have time to gain by taking new medications or testing out ground breaking procedures. My point is this research will change our world as vasculitis patients and should eventually increase the average lifespan after diagnosis at least we hope that’s what will result from all this tedious work.

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Let’s also discuss how the V-PPRN could make itself more widely known and more likely for patients to join. My recommendation is colorful and interesting non-scientific language via infographics with fun looking pie charts and colorful drawn in characters showing common symptoms would be effective. These can be had for a cheap price and one can get quality work for just a few dollars if looking in the right places. I’d be happy to produce an example to the V-PPRN Steering committee who our committee reports to. I also believe we should have a social media team which I’d absolutely volunteer to work with. I have well over a years experience promoting my blog articles to different communities and both were in the scientific realm I’d wager if I can report on astrophysics I can do vasculitis as well. In my opinion we should operate on 3 social media platforms to start I’d say Facebook, Twitter, and Instagram as we don’t want to be spread too thin and we want to model our responses after @MountSinaiNYC on twitter which is Mount Sinai Hospital in New York City. They’re quick to respond and that’s what users will want an interactive experience with a V-PPRN team that can act as a living FAQ of sorts rather than just publishing articles on a blog or a news page then simply copying it to social media. That just looks messy and gives people the idea that the organization isn’t too tech savvy and doesn’t care about patient interaction.

I’d also like to see us doing webinars for the public to draw in new members perhaps Dr Merkel, our principal investigator, can do a “State of the V-PPRN “ type update every quarter or so, I find people like to know the progress of activities with this type of organization to be sure their data is being used to meet their expectations. I sure hope Kalen Young sees this as she’s the one running my committee, her and Dianna Shaw have done a heck of a lot for our community and we should all be very thankful, I sure am. Let me also share the idea of working with companies like WEGO Health to get the word out as well as Health Central. I know both of these companies and many similar ones would likely be interested in at the very least reporting on the matter of the V-PPRN becoming open to registry for patients. WEGO Health also support advocates so we could ask them to contact those with Vasculitis and autoimmune diseases to blog and report about this. Using their already large database of health advocates would bring our cause to many different communities. I am not saying this as someone who works with WEGO Health but as someone who knows the benefit of companies who work with them. This connection would also provide the Vasculitis Foundation and VCRC with many more educated patient speakers for events which is just a bonus to our cause. Lastly I’d like to share one more idea on how to get the word out about V-PPRN. That’s creating a “street team” or “ambassadors program” either of these options would ensure we could utilize patients to recruit others. In return we’d send flyers and brochures for them to leave in rheumatology offices, vasculitis centers, in general practitioners offices, and to leave at local businesses around the community. These should have a QR code to scan which would sure help patients get to the website easily and the font should be large so that the elderly can read it as many patients are over 45 years of age. Other than that my only other idea at the moment is to create a phone application with Como which would cost us a mere $750 or so for a lifetime membership otherwise known as a diamond membership. Then we could create a phone application showing our recent articles, a contact form, our website, our FAQ, our store if we create items to support our cause like wristbands and t-shirts, and it could explain our cause in a simple about us page. These are just a few ideas I had floating about my mind and I wanted to know what the patients think about this or if you might have any suggestions on the topic.

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After our meeting yesterday I feel absolutely integral to this cause and will do everything in my power to make this a comfortable experience for vasculitis patients everywhere. It is astounding what we’re achieving with such a small group of people working on this unique project. I feel quite attached to it now and feel I am partially responsible for whether this research network is a great success or a failure. I sure don’t want to see something I’ve worked so hard to become a part of fail! However I don’t think that’s the case with such a dedicated group of people I cannot imagine this being anything but a huge success. As I told Kalen and Dianne last night I will not leave the V-PPRN until I am asked to leave, it closes down, we become unnecessary, or I am really dying and completely unable to perform my duties. Thank you for paying attention and even if you don’t have vasculitis if you’re one of my migraine readers or someone with cluster headache or neuropathy I can sympathize with you too I share that disease, but please share this with anyone you know who might know or care for someone with vasculitis. This is a huge project within our community and will likely change the way we think about vasculitis forever once it gets going. I am honored to be a part of this project and I promise to do my duty to our rare disease community. I truly hope that when the V-PPRN gets on it’s feet we will be an enormous success and we will carry the vasculitis community to a new era of discoveries and learning. Thank you for your time and please consider circulating this article as it will save lives if more people join this network which is scheduled for a November release.

2 thoughts on “The Vasculitis Patient Powered Research Network

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