Crock of ...

Soup. Crock pots of soup. What were you thinking?

We had a soup and snack sale over the weekend to support theBetesNOW. It was a great success. Thanks to everyone who donated a soup, chili or stew. How many you ask? Well here is my crock drying table after I hand washed them all. (hello dish pan hands.)




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More Cake

While I was testing cupcakes Blair made this for a pre-movie party.


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Cupcake

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YDMV Writes Stuffy

I'm in a grad school class and this week the task was in part a discussion of social media and Roch's social media guidelines.  Awesome - I get to write stuffy prose and to stick friend in footnotes. That's just strange. Here's a draft.

“Like a 7th grade dance.”

Individuals comparing the aches and pains of health experiences surely goes back prior to recorded history. In that sense the use of social media for health care dialogs is an extension of long common conversations into new technology. As Boulos et al more formally state, “Web 2.0 and its conceptual underpinnings do not indicate a sharp break with the old but, rather, the gradual emergence of a new type of practice that is evolution rather than revolution.”1 Roche’s guidelines for social media reflect this stating that social media’s, “basic aspect remains constant and is similar to traditional ways of communication: to engage in dialogue, provide and exchange information, and build understanding.”

Roche published their guidelines in August 2010. By that time Roche had sponsored two summits directly engaging health care social media writers. I was a participant at both events. Todd Siesky, Roche Public Relations Manager presented a case study on those summits at the Healthcare Social Communication Leadership Forum September 23, 2010. On a presentation slide titled “Your gonna need a bigger boat,” he states that the June 2010 event generated 50,000 Impressions with a reach of 1.25 million readers.2

To achieve those results Roche practiced some of the key behaviors they later codified in their guidelines. Among this was a long term approach. Their guidelines state, “Engaging in social media is not a one-off activity.”3 and “commit to follow-up over a longer period of time.” At the first event the initial interaction of social media and Roche was described by Dan Kane, Roche VP Marketing as being, “Like a 7th grade dance with the boys and girls awkwardly sitting on opposite sides of the room.”4 Before Roche could earn the impressions and readers that Siesky wrote of they needed to earn the trust of social media participants. In part this has been accomplished by investing time to stay engaged. For example Roche host quarterly phone calls with the summit participants.

Siesky’s presentation at the Healthcare Social Communication Leadership Forum lists the lesson Roche learned at the first summit including:
• Enter with valuable information
• Don’t only talk about yourself
• Be transparent and honest
• Keep it real
• Actively advocate for the patient community
• Help the community amplify its voice

A weekly Twitter chat for people living with diabetes takes place under the hash tag #dsma for Diabetes Social Media. The chat averages 100 participant weekly, a few of who were attendees of the Roche Summits. A recent chat focused on pharma participation in social media. Participants stressed that pharma needs to approach social media as a two way process, to listen and and respond not simply push product. Roche was repeatedly cited as a company who was participating in social media the right way. Said one post, “I've learned from Roche, and I know they've learned from us. I respect their efforts.”5

Beyond the the summits Roche has stayed engaged with social media. In doing so they found opportunities to work with the patient community. A specific case in point is the Big Blue Test video at http://www.youtube.com/watch?v=nkLHgK94Z0E. It was produced by Manny Hernandez of the Diabetes Hands Foundation, David Edelman of DiabetesDaily.com and Riva Greenberg, from DiabetesStories.com and Huffington Post. All attendees at the Roche summits.

Greenburg wrote, “For every view the video receives Roche is making a donation to assist the Life for a Child program and Insulin for Life. With 100,000 views, Roche will give the Foundation its largest donation - $75,000.”6 The video received over 100,000 views by the deadline adding to the impressions and reach Siesky cited above. 

In “The ROI of Social Media Is Still Zero,” Augustine Fou says,”Social media is not media - people’s conversations cannot be purchases, nor should they be purchases.”7 That is a issue for participant at the Roche summits who are deeply concerned about being seen as selling out. Most feel that being transparent is a key part of maintaining credibility. A Google search of Roche Social Media Summit returns 75,000 pages. The first dozen pages of the google search are dominated with blog entries about the summit in part to provide that transparency and in doing so providing reach and credibility to Roche’s efforts.

I suspect that as the dance between social media writers and pharma continues Fou will be proven wrong about the ROI of Social Media. It is not zero.

Full disclosure: I participate in Roche’s Social Media Summits. I join their quarterly Social Media calls. I actively supporte the Big Blue Video campaign with twitter messages and Blog post at http://www.ydmv.net/2010/11/watch-this-agian-and-again-and.html and here http://www.ydmv.net/2010/11/big-blue-backstory.html.

1 Kamel Boulos, M. N. and Wheeler, S. (2007), The emerging Web 2.0 social software: an enabling suite of sociable technologies in health and health care education. Health Information & Libraries Journal, 24: 2–23. doi: 10.1111/j.1471-1842.2007.00701.x
2 Siesky, Todd A. "Healthcare Social Communications Leadership Forum." Web. 17 Nov. 2010. http://www.cvent.com/EVENTS/Info/Summary.aspx?e=5e195e94-a185-436e-8b46-247cfc26b809.
3 "Roche and Social Media." Roche - We Innovate Healthcare. Aug. 2010. Web. 17 Nov. 2010. http://www.roche.com/about_roche/at_a_glance/socialmedia.htm.
4 Mendosa, David. "Roche’s Social Media Summit." Diabetes Developments. 24 July 2009. Web. 17 Nov. 2010. http://www.mendosa.com/blog/?p=448.
5 Thill, Lee Ann, “#DSAM Chat November 4” Twitter Web.  http://wthashtag.com/transcript.php?page_id=16526&start_date=2010-11-04&end_date=2010-11-04
6 Greenburg, Riva. “Save a Child in Less Than Two Minutes.” the Huffington Post. 3 November 2010. Web. 3 November 2010.  http://www.huffingtonpost.com/riva-greenberg/save-a-childs-life-now_b_777992.html
7 Fou, Augustine. “The ROI of Social Media Is Still Zero.” ClikZ 14 October 2010, Web. 14 November 2010 http://www.clickz.com/clickz/column/1742180/roi-social-media-zero

FTNW: JDRF IDDP with Amylin Pharmaceuticals

Good friend of the Blog Scott Strumello brought this to my attention. I think it is worthy of a From The New Wire post so thanks Scott for the heads up:

From Amylin's site:  

Clinical proof-of-concept study will also evaluate whether metreleptin can reduce the amount of insulin needed by patients with type 1 diabetes

NEW YORK and SAN DIEGO, Nov. 16, 2010 /PRNewswire-USNewswire/ -- The Juvenile Diabetes Research Foundation (JDRF) and Amylin Pharmaceuticals, Inc. (Nasdaq: AMLN) announced today that they entered into a research collaboration agreement to provide financial support for a clinical proof-of-concept study to investigate the effects of metreleptin, an analog of the human hormone leptin, in patients with type 1 diabetes. Researchers at The University of Texas (UT) Southwestern Medical Center will conduct the study.

I wish JDRF were a little more forth coming in these releases like what level of funding is involved in the IDDP from Both the JDRF and Amylin. What are the milestones envisioned. Stuff like that. I would think that JDRF has a transparency responsibility to all those who support it and that Amylin would have similar a fiduciary information reporting roll. Well at least in the next 10K/Q presuming the matter is material and given it is worthy of a press release I assume it is material.

World Diabetes Day Detour

We spent World Diabetes Day packing meals at a StopHungerNow.org event sponsored by New Church Live and the boys high school, the Academy of the New Church. A great time was had by all as the little clip shows. It was all about food and there is a glancing view of a pump. That counts as diabetes related right?

Of course one of the points I try to make here at YDMV is to make the diabetes management second so doing stuff like this can be first once and a while.



Thanks to the folks at NCL and ANC who organized this. I wonder how many carbs are in 30,000 meals? ...no I don't.

Remote Reply

I received a reply to my letter about One Touch Ping remotes and the possibility of confusion when two are used in close proximity.

What is important is this: Yes there is a way to put a legible name into the pump that appears on the remote that controls it. 


It is a very nice reply. They didn't call me any of the nasty names I probably deserve.

The instructions make it clear that, “Note: The custom Name appears on the Meter. It does not appear on the pump.” and it can only be 7 characters long, less than good old fashioned pre Windows 95 DOS but hey it is something.

The instructions are here: http://www.docstoc.com/docs/61132161/Ping-Meter-Customization

Sorry for the ugly ads and stuff. When I work out a better host location I'll move the link. I think it should be on an Animas / OneTouch site. It isn't, at least yet. 


Y’all can feel free to stop reading now because the rest is my very wordy commentary on customer service. YDMV errr.. YCSMV.



I don’t know if it is significant or not but the letter I sent was to One Touch but the reply came on Animas Corporation stationary. I also had the pleasure of speaking with Animas folks on the phone. Over the years I have found that I genuinely like the people I have met from Animas.  So it isn't surprising that the people I have met over the phone in this case are genuinely likable.

The letter said (I apologize for any typos and or egregious spelling, I am sure they are far more literate than I and such mistakes are my responsibility):

Thank you for contacting us about your recent experience with your children's One Touch Ping glucose management systems.

We appreciate the confidence in our company that prompted you to bring this matter to our attention. We at Animas Corporation have worked hard to meet the needs of our customers with innovative and high quality products. We believe that every letter from a customer offers useful insight into our business.

For that reason, we take every complaint and concern seriously. Your specific concerns regarding the One Touch Ping Glucose Management system have been reviewed thoroughly by the customer Support Department and escalated to the Complaint Management team. Complaints (the actual complaint numbers have been redacted because I don’t see value in putting them in the public domain.) entered (on) your children’s behalf are currently under review.

Additionally, you requested instructions to personalize your children’s meter. Those instructions have been included with this letter.

Again, we appreciate the time you have taken to contact us. It’s only through feedback like yours that we can continue to improve our products.

Sincerely,
Manager of Customer Support.

I have some experience in the craft of writing these kind of replies. I did it for a big bank for a few years. From that background I can make some semi informed comments on the letter (and realistically regular YDMV readers know that ‘semi informed’ is a significantly higher intellectual quality than most of the comments I make here.)

The response is both professionally and nicely written. For the most part it doesn’t say very much at all other than “Thanks. We got your letter. We’ll think about it.” That is actually just fine with me other than that part shouldn’t take a month.

It should be out the door the next day. In fact I’m willing to bet cash money that whole sections of the letter are boiler plate and if they aren’t the should be. Specifically the first three and last paragraphs. That fourth paragraph was the hard part.

My two cents is it would be better customer service to send the the other four paragraphs right away and a comment that the instructions will be sent as soon as they can be written and tested, with an expectation of how long that will take. But hey that is me.

I was on a time clock to reply to executive level letters within fixed time frames and those time frames were at the longest three business days, unless the letter was from a regulatory or political office holder in which case a response had to go out the day was received in kind (call for call, letter for letter etc.) and followed up by a letter in the mail the next day if the original was not a letter.

As for the instructions on how to customize the pump/meter. I haven't tried them yet they are four pages long and I need the pump and old PC running a legacy operating system like XP to do it*. I have up loaded scans of the instructions for the benefit of others who may wish to take advantage of theses instructions. I understand if nobody else is into four pages of crappy scans of instructions. I will comment on the actual experience after I try it.

I reached out to Animas and asked if they would like to provide a clean pdf file. They being a highly regulated business need to go back to the chain of command, a.k.a. Compliance, to see if that is OK.
To be precise they provided me personalized clearer instructions on cusyomizing a pump name because I pushed for them. Knowing I intend to share them with other parents, they will not provide a clean electronic copy, at least yet.  They put it in the context of wanting further review, like the sidelines tossing a red flag at an NFL game.  I have no idea how long that will take, but while the ref is under the hood,  kids still have diabetes to manage.

I am from Philly. Eagles fans boo bad calls, we even boo good calls we don't like. I'm not sure which one this is.

If, upon further review, I get a better pdf, I’ll post it.



* Insert my typical rant about diabetes devices not keeping up with computer operating systems technology aka current Windows & and Snow Leopard. I have a few readers who are even more rabid about it than I. I bow to their expertise and acknowledge their contributions through comments here at YDMV. Which is my boiler plate for “Way to keep me honest dudes.”

For Anonymous - ANC Sigma Telegrams.

Some anonymous soul (and this is YDMV, I can understand the desire NOT to associate one's name with it) commented on the Mark Fox clip about another of my videos on Vimeo. A clip of kids singing. Here's more and the back-story.



For those of my YDMV friends that aren't alumni of the Academy of the New Church and I expect that is most YDMV readers, it is a private, church (no kidding it is in the name) school in Bryn Athyn PA. It is at times a very impressive place and no time more than when the kid's clubs send each other singing telegrams. There are four clubs, two boys, two girls, one dorm kids one local kids of each. Twice a year the clubs have banquets and send each other telegrams.

That a school of maybe 200-ish kids can find four groups of kids with the ambition and talent like this year in and year out in impressive. No it is not a dedicated preforming arts school. These telegrams have been going on since way back when dinosaurs roamed the earth (and I was in high school) and even earlier. I that think speaks a lot about a culture that the creates opportunities for kids to diversify and explore interest. www.ANCSS.org

Connor joined his club's (Sigma!) telegram troupe this year. I shot some video so Kelley up at NYU could see him. Well some alert YDMV reader (and yes I consider that an oxymoron) somehow spotted that clip on theBetesNOW's Vimeo channel. I was very embarrassed, the quick post edit work was beyond pitiful but I found this and at least the kids heads aren't cut out of frame.

Reece is the Sigma President, a fine football player and sings the opening solo. Behind him is a guy with a triangle, Greg. He is the song leader and worked out the arrangements. Greg can do things with a fiddle that brings a tear to the eye. The soloist in the second song has committed to serve our nation in the military. Great kids, mine's  OK too. So there are some very diverse interest pooling their talents.

As an ANC alumni, Sigma member and dad I'm proud of these kids for a lot more reasons than you can see but all the ones you can see on the clip too.

Enjoy.

Big Blue Backstory

Manny has some of the back story on people in the Big Blue video. Good read, particularly if you have a girl interested in dance.

http://www.tudiabetes.org/profiles/b...stories-behind

Oh and just under 10k views left to go. Don't stop playing again and again.

Ya Oughta Know This

 If you live with diabetes you are the primary care giver. If you are a parent your job is to pass that  on and that is harder than taking the responsibility on the the first place.

Here is my good friend Mark, who was the hero of one of my earliest YDMV posts, with 24/7 on the matter:



The plan for d-blog day is six things I want people to know. Six is a lot. I find most folks don't have that much of an attention span. So if y'all get this Primary Care idea - I'm good with that.