Wow, most of that post header came out like some kind of pet command. Sorry. I’m just excited, I suppose, to have been contacted by the renown innovation research firm Cambridge Consultants on this project: they’re looking into combination products* for the diabetes community and would like to ask all of us to complete a brief survey, to give real and actual patient perspectives on how we choose our devices and how we feel about them.
*They’re defining “combination products” as things that combine drugs or biological products with a specific device used for administration of the drug (injection pens, pumps, inhalers or medication patches).
“The intent of the survey is to uncover information about the extent to which
patient requirements and usability factors are taken into account in the development and prescribing of combination product devices.” Hmmm, I’m sure we all have a few opinions there…
Another version of the survey will be filled out by doctors who prescribe these devices, and also by device manufacturers who develop them. In other words, all the so-called “stakeholders” get their say!
What’s it all for?
The collective findings will be presented at a March 3 panel event for the Massachusetts Medical Device Industry Council (MassMEDIC). This organization is a powerful force in the medical device industry. They “advocate industry positions at the federal and state government levels” and also have close contact with the FDA. The panel is about “maximizing the potential of combination products,” which sounds very profit-driven, I’ll admit, but here’s the thing:
I’ve long been complaining that there are no established Best Practices for achieving patient involvement in the design process of products for chronic illness care. Typically companies create something very clinical or engineering-driven, and then pay lots of money to set up “focus groups” where they fill a room with patients (i.e. customers), give ‘em the gadget, and just watch to see what buttons they push… That’s a crappy way to go about it, IMHO. Patients need to be involved in conceptualizing their own new tools! This is of course the whole drive behind the DiabetesMine Design Challenge crowdsourcing competition.
The point being: I think it behooves us to talk to the medical device industry when they finally ask us point-blank.
So please help out by filling out the survey HERE.
The survey results will also be available publicly via the MassMEDIC website following the panel in early March — we’ll direct you there when the time comes.
Thank you All, and thanks also to the med device innovators at Cambridge Consultants.
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Hey! I just tried to take the survey. was asked if I use “an injection device” to delivery my medication. Wasn’t sure how to reply since I wear a pump, which I don’t consider to be an INJECTION device, but rather an INFUSION device. I replied “no” and then was told I couldn’t continue with the survey.
Can the survey be changed to clarify what they consider to be an injection device AND can I be “reset” to be allowed to take the survey again? Cambridge Consultants, interested in your reply!
Thanks,
Kristin
Oops! Thank you, Kristin. I just spoke with the Cambridge folks, and they are going to make that change: adding “or infusion device.” They are also going to make a reset so that you can go back in and participate.
Thanks for your enthusiasm!
AT
I just took the survey and have a couple of comments. One is the question “8. When you were prescribed the medication, were you given a choice of devices.” Note that when many patients were prescribed medication, there was no choice of devices (i.e. syringes). I still answered though.
The other comment is that it was making an assumption that the user might only find it difficult or easy. It should be noted that “easy” or “difficult” are rather subjective terms. For me convenience is a huge factor – which includes features that a pump may or may not have.
For example, I have features on my pump, which are in fact make it easy to use, but still drive me crazy when the pump won’t let me do something I want to do, or burp up a useless report that I cannot manipulate because of proprietary software. I have gone to lengths to enter my data in an iphone app, and customized it to work for me, and can download data that I can manipulate. I shouldn’t need to go to such lengths to get something that should be easily available to me.
Now I sound negative about my pump, but without it, I’m sure I wouldn’t be here today, and for that very reason, I love my device! (it just could be better!)
Agree with Jamie on the easy vs difficult thing. There are some features which are too buried in menus or require too many button presses to be able to use conveniently. I equated this as “difficulty in using,” not because it is really difficult in the sense that I might not be able to do it if I tried, but because it is inconvenient and an obstacle.
Would be nice to see what kind of results are generaetd from this survey, if the company can share – at least how many people participated, if they are T1 or T2, etc.
Good luck!
Kristin
The “when you were prescribed” wording was strange. Because I was first prescribed insulin long before pumps were available. Better wording might be “when you started on your current device, were you given choices”.
There seems to be a focus on ease of use. This is important, but not as important to me as delivery options. The Cozmo is extremely configurable, which I like, but not as easy to use. I don’t mind the latter because of the configuration options.
I agree with the general consensus that the wording in the survey is unclear and not patient-friendly. Yet, I respect that they are including us in their assessment. Posted it on my site to spread the word.
My thought was there should’ve been a section for comments. On the question “Have you asked if you can use a different device?” I put No because I’m still in my 4 year warrenty period with my pump. My insurance will not cover a new pump until the current warrenty has expired. Therefore it doesn’t make sense for me to ask my Dr about other pumps at this time.
It would’ve also made more sense to have us rank order the decision factors. 1-Insurance Coverage, 2-Cost, 3-Ease of Use, 4-Portability etc. I may like a different product, but if my insurance doesn’t cover it, then I’m not going to persue it.
I agree with the previous comments that the survey was awkward. I finished it feeling that my answers meant very little and did not express anything of my opinions of using syringes then a pump. Like others I was diagnosed long before anything but syringes were an option. I did not feel that I expressed any opinions on what I would like/need for my continuing journey using medical devices for my Type 1 diabetes. Just a bad survey IMO.
Well, darn it. I think that’s at the core of the problem here. When research DOES include patients, the surveys often don’t ask us the right questions!! Although the Cambridge folks did say they’d included a section for comments…?
Have to agree, awkward questions plus I saw no section for comments.
Of course, for me when I “chose” my device (pump), the key was having a back-up that I could use when the primary failed. Almost all other considerations were immaterial given that I was traveling to places not well-served by Fedex and their ilk.
Fair Winds,
Mike
Changing a survey while responses are being collected, even if it’s just to clarify a question, invalidates all of the data collected so far. They’re either not trying to collect actual data (but just input), or they’re doing it completely wrong.
Which leads me to your comment, “I’ve long been complaining that there are no established Best Practices for achieving patient involvement in the design process of products for chronic illness care.”
I’m sorry to say that you don’t really seem to know what you’re talking about. I’ve been involved in several studies with design agencies (with Frog and IDEO, both local to SF) working on insulin pump devices. I’m a type 1 diabetic and happen to be a product designer with over a dozen years of experience, but I was just one of a several dozen people meeting with the agency during their work. I admire the passion you bring to the design competition you run each year, but blaming the lack of innovation in the industry on weak design process is ludicrous. Concern for patient safety and the byzantine regulatory system at the FDA clearly delay innovation and product iteration, not to mention profitability, to a large extent. Patients / users clearly do need to be involved in the product design process at many steps in the process, but assuming that that involvement trumps the hundreds of other factors that need considering doesn’t represent reality.
@Phil – there’s nothing wrong with clarifying the wording in a survey instrument by adding a few words of explanation in parentheses.
Of course design firms like IDEO and Frog are doing great things. But lots of other organizations haven’t caught on to how to work with patients yet. In fact, I’m working with IDEO to put together a Diabetes Innovation Summit event next Fall that will help bring together patient advocates and medical device designers.
Of course, there are plenty of other issues in the mix, like regulatory constraints! No one is brushing those aside.
Chill, Phil.