Crowdfunding is
certainly a trendy, hot topic right now. However, more important, it should never be forgotten that the wisdom of the
crowd can do great things. For example, thanks to introductions and
partnerships through crowdfunding platform MedStartr, I am now able to relaunch
my EndoGoddess Diabetes App Clinical Trial fundraiser for $5,000 rather than $25,000. The
incredible price drop is due to a partnership with the social clinical research
platform, Genomera.
Genomera is a
Silicon-Valley startup founded by Internet and health veterans, who have
created a platform that brings the crowd to research. Users, or potential
research participants, log in and find ongoing studies that they would like to
participate in. By filling out surveys and self-reported health data at various
intervals with small gift certificate incentives, recruitment and data collection can
transpire without the need for hiring nurse coordinators. Furthermore, the
platform allows for a wider geographical sampling of app users and a richer, more 'real-life' data set.
Please consider
supporting the EndoGoddess App crowdfunding clinical trial if this is a trend
that you would like to see as one option to reduce rising healthcare costs and to improve healthcare quality by the efficient study of mobile health options like the EndoGoddess App: http://www.medstartr.com/projects/19-endogoddess-diabetes-app-clinical-trial-fundraiser
The EndoGoddess recently won a gold medal this past weekend. Well, not exactly a gold medal, but rather a golden moment at last weekend's American Association of Diabetes Educators (AADE) Annual Meeting in Indianapolis. In a popular session on the power of social media for diabetes educators called "Power Your Practice In Our Socially Networked World' advocates Hope Warshaw, Manny Hernandez, David Edelman, and Amy Tenderich, the EndoGoddess App was mentioned as a great source for helping patients (and diabetes educators) navigate how to get involved in social media.
In the above app screenshot, upon opening the medical content button on the bottom toolbar, the 'Get Involved' tab gives instruction on how to participate in weekly twitter chats such as #dsma as well as listing several popular diabetes blogs and online communities. The session and the meeting are nicely summarized here with a few notable tweets as follows:
I am proud that the EndoGoddess App offers value to certified diabetes educators (CDEs) who can provide the app as resource to their patients which then opens the door to them and the healing that can come from connecting with those in the DOC (diabetes online community). Perhaps the 'nervousness' noted by diabetes educators (CDEs) about social media for diabetes will improve to empowerment!
I recently returned home from several fun-filled days at the Roche Diabetes Social Media Summit in Indianapolis. Roche pioneered the idea of an open exchange between pharma and patient advocates first in 2009. Roche is a company that knows the power of dialogue with customers and strives to make it happen with the now 4th Annual Roche Social Media Summit. While this effort obviously benefits Roche's bottom line, it also benefits patients in getting products that are needed and wanted in order to live a vibrant and 'vogue-filled' life with diabetes (as in the picture above).
Here are a few highlights:
We started out by sharing fellowship and fun with friends and other diabetes warriors like Kerri Sparling of the popular blog sixuntilme.com.
We were then inspired by Josh Bliell, spokesperson for the Indianapolis Colts, who shared his story of recovery from a double amputation while in combat in Iraq. His recover was difficult, but utimately he found the inspiration to take his first steps toward walking...and healing. "I met celebrities and politicians while hospitalized but it was another solider with the same injury that inspired me to take my first step". He concluded with a message that our voices as diabetes advocates are powerful for such healing.
We then toured Roche headquarters in Indianapolis where we saw the process involved in Accu-check glucose strip manufacturing and product testing. We also got to speak with Roche executives as to the future of diabetes technology and innovations. Some of the things that we got to see were proprietary so I cannot write about the specifics. However, it was clear from the discussion that data integration between devices is a common goal for the future shared by both advocates and pharma executives. As an app developer and technology entrepreneur focused on the initial steps to glucose meter and app data integration within the Endo App Products (stay tuned for new launch details in the coming months), I was happy to hear that we are all on the same page. This makes the goal of data integration which is VERY much needed now VERY much possible.
We then attended the Indianapolis Indians baseball game where the mascot (a bear I think) was very friendly! I am wearing one of my Camp Sweeney diabetes camp tshirts, easily one of the most influential experiences in my diabetes education. In fact, camp was my first exposure to the power and healing that comes from interacting with the diabetes community. I guess you can say that camp is the original offline version of the DOC (diabetes online community)! Tales of diabetes camp were discussed often throughout the event by both patient advocates and Roche employees.
While at the baseball game, we all got to experience a first with friend and diabetes advocate, Kelly Kunik, as noted in the above video: her first tasting of cotton candy! She blogged about how dispelling myths about diabetes by eating cotton candy and doing so with other advocates without having to worry about ignorance or judgement was a special experience in itself: http://diabetesaliciousness.blogspot.com/2012/08/the-cotton-candy-experience.html
On the last day, we got to meet Steve Richert. Steve was diagnosed with type 1 diabetes when he was 16 years old but never let it stop him from doing the things he loves, such as mountain climbing. Living Vertical is a fundraising project and documentary that he started earlier this year to raise awareness for living life with diabetes without boundaries. It is his dream to one day be a guide for those with diabetes that desires to climb mountains. "Climbing mountains is do-able for anyone, the limitations are only in your head, it can be done." He left us with the message that in mountain climbing and in diabetes, nothing is impossible.
In conclusion, while initially the summit inspired listening by a pharma company to patient advocates, I learned that pharma needs patient advocates to listen to their concerns too in order for us both to achieve our common goal of making life with diabetes easier. Roche executives we met agreed with patient advocates that the rate of technology progress is too slow in the United States as compared to Europe where products are released 4 years earlier due to less regulation hurdles. Pharma needs the patient voice and their concerns to not only circulate via social media but to also enter the communitcation channels used by the regulatory bodies that impede diabetes innovation while also maintaining safety. Suggestions for action to be done by advocates: FDA consumer comment submission, participation, attendance, and joining forces with diabetes advocacy organizations already working on technology advocacy. It was unanimous amongst the group that next year's summit be in Washington DC and related to furthering this 'advocacy and democracy' mission...translating the "D" in diabetes, the DOC, and DSMA to democracy for patients! Many thanks to Roche for being a partner with patients. :)
A complete list of the diabetes patient advocates in attendance at Roche Diabetes Social Media Summit 2012 with their twitter handles and blogs is as follows:
(*Disclaimer: Roche paid for my travel expenses to this event as a diabetes patient advocate for which I am very grateful. All opinions are my own. As I am not currently active in clinical practice at this time, there are no related practitioner policy violations.)
