Mark S. King has a video about e-Patients on his blog My Fabulous Disease. In it Mark shares patient values across heath concerns. I hope in doing so he helps all see beyond our unique conditions to shared roles as patients. Maybe it is gifts are what make us unique not our heath.
I may have ranted a bit at times about diabetes data. My new pal e-Patient Dave sent me this little link. It aint just us diabetes folks who want our data and this is a lot more fun than reading my stuff.
I was part of a conversation on e-patient rights sponsored by Klick Pharma (from who I swiped the photo), HealthCentral and the Digital Health Coalition. About two dozen patient social media writers with diverse histories with a variety of conditions shared experiences and hopes about health. I think we were trying to talk about digital health issues but just as often spoke about empowered patient concerns. I am still not sure what e-patient means but I found the conversation fascinating non the less for a number of reasons.
While we were, at least in on the basis of the invitation, talking about an e-patients bill of rights I think Mark King made a particularly good point about our responsibilities, not that I think he meant it that way. He said he was hopeful, happy and a handful. I found that particularly good as a guiding principal for a social media writer.
I want help make life better so I should try to be hopeful. Happiness is a choice that can be made over anger and it probably facilitates hopeful participation. I sometime fail to find happiness and I think that is probably a shortcoming I can work on. Finally I as a social media writer I need to be a handful. I need to become informed, share and motivate from my individual perspectives and at times, happily and hopefully pursue interests in cases where patient health perspectives need a voice. Thanks for that Mark.
Kelly Young made maybe the most profound comment of the day regarding the device and medication trials and approval process. She simply said that nobody asked her what she as patient wants. From that flows a similar observation about what the patient’s definition of successful treatment is. Maybe asking the patient is success should be part of the larger process. Thanks for that Kelly.
As we got down to conversations about digital medical issues I found that my new friends, with a variety of medical problems, shared similar concerns with what I hear from my old online friends in diabetes community. Notably, patients want access to the information about their condition, the data. We would like to have access to our information in a not too overly clumsy way, preferably electronically.
This leads to the cold fact there there is no simple, not too overly clumsy, standardized electronic means of patients accessing their own medical information. So as a health consumers I should advocate for patient input into the creation of such standards. I should do so hopefully and happily. I know that nobody is asking what patients want so I may need to be a handful to the health industrial complex in offering up my two cents.
Some smart YDMV readers may ask, “Hey isn’t that what SmartCell’s SmartInsulin does?”
Yes, yes it is.
So you may wonder why JDRF would be looking for chemist to reinvent the proverbial wheel. I know I did. Particularly in light of JDRF funding SmartCells via an IDDP.
Scott Strummelo and I joined JDRF on a conference call on that very issue. JDRF’s reply, as I understood it, was that while they have confidence in SmartInsulin other means of achieving the same end would be great for a variety of reasons. Different glucose responsive insulins would provide patients options to see which works best for their them - your diabetes may vary and so might your response to an ‘intelligent’ insulin. Competition in the market place can have an effect on price that is good for consumers. The drug approval process is a long and risky process, given the potential value of a glucose responsive insulin, more “at bats.” is a good thing.
Better is better and I am all for seeing if some smart chemist can bring their skills to solving the science of another way to prevent infused insulin from causing hypos.
Honestly, looking in the light of blue candles, I can't think of much that is more important.
It take them too darn long to approve better stuff for diabetes care. Someone should do something about that...
... and there is an opportunity to do something right now. The FDA docket on Low Glucose Suspend (LGS) is open for just a few more weeks. Take advantage of this chance to share your views with the regulators and congress.
You may feel that you are not qualified. You may fear that you do not know all the ins and outs of medical studies and that is what this seems to be about.
I think this is about more than ins and outs of studies. This is about timely approval of devices that can help manage diabetes. You may not use a CGM, you may not pump, you may have doubts about artificial pancreas but if you live with diabetes regulatory delay puts you at risk.
I think we should have an expectation that the FDA will preform their regulatory duties with alacrity. That doesn’t seem to be the case with LGS. Here is a product that is in use in 40 different countries and the FDA still doesn’t have a process for considering applications to approve it here. That is more than a little late to the party.
If nothing else the FDA should hear from people with diabetes saying that devices should not come to the US market years after they are approve else where. The FDA needs to do its thing in a timely, citizen friendly and focused manner.
I think LGS can save lives. Particularly lives lost to sever overnight lows. I
That could mean fewer blue candles on Facebook. There are few things I hate seeing more than that symbol of grief and remembrance of a life lost to diabetes. Further delay moving forward on devices to that may keep kids alive is unacceptable.
LGS is not a magic bullet. It is no cure.
It does offer a means of lowering potentially tragic risks. What there is NOT is a means of the FDA will considering these and other pump / sensor advances as they are created.
Please comment on the Docket. I view it is one way of avoiding blue candles. I hope it is only ONE of MANY ways of avoiding blue candles. We need all the ways we can get to keep them out. The FDA should be our ally not an impediment in those efforts.
Comment to the FDA and share those thoughts with your member of Congress. Be someone who does something. As it says in the first amendment, “petition the government for a redress of grievances.”