Every year, since 2009 Roche has been organizing a Diabetes Social Media Summit. I have blogged about a couple of times before:
A comment from my friend Mike Hoskins (who now serves as Managing Editor at DiabetesMine.com), made me think that this year's summit which is scheduled to take place at the end of July in Indianapolis, right before the AADE Conference in the same city, is a great opportunity to open up the summit to the entire community.
What would you like us to ask Roche at the 2012 Diabetes Social Media Summit? Please post your questions here and we will make sure to raise your concerns, issues, thoughts, and anything you would like to have brought up.
I use the Roche Accu-Chek Spirit Combo pump and remote.. It is new but already feels dated, I would like to know what new pumps they are working on etc and what they have in the pipeline for the next 3-4 years.. CGM functionality as with the Vibe etc?
I would also like to know if they would consider using smartphone to function as the bluetooth remote, as I am all for having to carry around less gadgets!
I'd like to know why +/- 20%, or 15%, is still acceptable. I don't care what the FDA says is acceptable. I want to know why meters can't be more accurate and why test strips still are so hideously expensive.
Ditto on the expense. Given the astronomical number of strips they sell (and the quantity I go thru every week), I do NOT see why they have to cost upwards of $1 per test (which they do, whether you are paying for them or your insurance is).
Here are my suggestions:
Ask Roche to become of model of ethical behavior, particularly as it relates to societal and patient interests.
As to Roche's glucose meter business, I agree that we strongly urge Roche to take the lead in increasing the accuracy of their meters, but I'd also ask that they take more of a lead (with other companies) in developing open interoperability standards for the exchange of test data between other applications.
I'd also urge them to consider the focused development of products that would aide in the diagnosis of Monogenic Diabetes (or Maturity Onset Diabetes of the Young (MODY)). Only 1-2% of diabetics are currently diagnosed with MODY at this time, but some speculate that as many as 10-15% of diabetics have the condition and are improperly diagnosed and treated. There is a great need for affordable and effective diagnosis of MODY and current technologies should enable this to be a reality.
I especially like the MODY suggestion. It just breaks my heart every time I read about improper diagnoses with some PWDs going years struggling with the wrong therapy (not to mention what that does to their life expectancy).
bsc - I heartily endorse your request that Roche take an industry lead in moving toward an open interoperability standard for diabetes hardware data. I produce voluminous data from an insulin pump, a CGM, and a fingerstick meter. I also track exercise duration and intensity as well as carbohydrate consumption. The only way to distill analysis from these various data sources is to integrate it in one place so that meaningful reports can inform and guide my daily decisions.
I resent corporate strategies that place their parochial interests above mine if they seek to limit their data collection and subsequent analysis to their and allied companies' data environments.
An open standard will create more overall use and demand such that it will benefit everyone more.
I really like the Diasend functionality but since my switch from the Ping to the Omnipod I can no longer upload insulin pump data. Diasend, however, falls short since it doesn't collect carb and exercise info.
I would like to see Roche vastly improve their SW for managing boluses, corrections, IOB and how "events" get recorded. For example, every Sunday that I have a late breakfast, I can't record that as "Breakfast" on their SW. Similarly, because IOB is figured on a "flat line" basis, I have overcorrected or under-bolused. The end result, is I have given up on the SW and having a somewhat integrated solution where the meter and pump "talk".
Probably along the same lines, would be making the data open-standard.
I found that the new Walmart meter is produced by Arkray USA and the going rate for Glucocard test strips is about $14/50 (28 cents). It was already pretty cheap before Walmart rebranded it.
What Terry said, Many times over.
I'm interested in how user feedback is incorporated into the design process for a product like an insulin pump. I often observe what I consider product obvious deficiencies that could have been resolved with a robust user study but are not caught. I've worn 24/7 various brands of insulin pumps for 25 years and hold definite opinions about how they perform in the real world.
From my limited perspective, it appears that many enhancements and outright mistakes could be pre-empted if seasoned users' experience could be adopted late enough in the process to make a difference. I would be very interested in a detailed description of how companies like Roche incorporate users' studies to inform design, software, and engineering decisions before the FDA cement hardens! I would love to participate in a user study but have never been asked.
Okay. Based on the feedback shared, here are the questions I will be making sure to present to Roche in the next 1.5 days with them at the Diabetes Social Media Summit:
1) What is Roche doing (or planning to do) as it relates to becoming a model of ethical behavior in connection to public health and patient interests?
2) How does Roche handle payments and gifts made to health care professionals?
FDA Approvals and Product Launches
3) When is the Solo micropump launching in the US?
4) When is the Combo pump is going to be available in the US?
5) Why +/- 20%, or 15%, is still acceptable, regardless of what the FDA says? Why meters can't be more accurate?
6) What is Roche doing to take the lead in developing open interoperability standards for the exchange of test data between other applications?
7) What steps is Roche taking to develop a more accurate meter?
8) What is Roche's reaction to Walmart making test strips available for 18 cents a strip?
9) What is Roche doing to make test strips more affordable?
10) What new pumps is Roche working on? What do they have in the pipeline for the next 3-4 years? (CGM functionality as with the Animas Vibe, for example)?
11) Is smartphone integration being considered to function as the bluetooth remote, to reduce the number of gadgets being carried around?
12) Can you describe the process for incorporating user feedback into the design process for a product like an insulin pump?
13) Is Roche considering the focused development of products that would aide in the diagnosis of Monogenic Diabetes (or Maturity Onset Diabetes of the Young (MODY))?