This is a no brainer. This website has been most helpful to me because it is about sharing personal experience and knowledge. Everybody who writes in is making a contribution of sorts. We will benefit even more by hearing from company reps who may have access to a broader knowledge base and could offer solutions to problems that keep appearing repeatedly on this website. Great idea, keep it transparent.
If its full disclosure of who they represent in their name/title, and you explicitly limit to clinicians and explictly exclude sales/marketing reps, then clearly it can only help content here. (Admins can monitor them as well.)
Sometimes I see folks disscusing things not addressed in company literature, but which a company rep could EASILY answer based on say company trials (eg will the omnipod pump work if worn “upside down”)
As far as it stopping user complaints/comments, I doubt it.
Lets face it, users here WANT reps to listen and improve their products using this feedback. Its a WIN-WIN!!!
I am for it, but maybe with a twist. I feel that having a corner in our little community will have advantages. It is a tribute to the size of our little neighborhood, because we are growing and improving as a site. I suggest, this be allowed, provided the company financially support the community. I suggest that they be allowed to have a paid for corner, one that they monitor and support, but also one with fences around it so that they have to satay within.
For this privilege, I suggest they financially support our community with a donation of $15,000 - $20,000 per year. We saw that our fund raising fell short. I suggest we we require a contribution which would also be 510c3 eligible for not less than $15,000 per year. I suggest a 2 or 3 year contract, with the stipulation that other manufacturers will also pay, wiht the same restrictions.
rick phillips
The risk with allowing some company reps in promoting their companies products is that if you let one group in, it becomes hard to exclude the rest. That includes the sellers of sleazy “cures” and supplements. I don’t believe you can have a policy that says, “We allow commercial posts from companies we personally like and bar those we don’t.”
Have you run this past your legal advisors? The nonprofit board I was associated with years ago was very shy of doing anything that might look like it was promoting any commercial product out of fear of jeapardizing its nonprofit status. That was what they’d been told to do by their legal advisor.
Bayer once had a “Clinical Support Position” open and I interviewed w/ a pretty high up person in the company. I have a MS in Biology w/ 15 years clinical care experience. When I interviewed I was told, even though the ad said they needed clinical support (someone to train/support all the “non-science staff” AKA business/sales) person…it was a “sales position”. The salary was directly linked to the sales of the sales force the position managed. He even said it was not important that I had a background in science and medical care…that they could send someone to “biochemistry training” in Texas somewhere, for 2 weeks! So, don’t be fooled that they have some privileged background in science to inform you. You can try to control what they provide to the community…, but know, that the ultimate purpose is to sell you something…an idea, a product, something. Maybe if you specifically asked certain researchers to post here…that may work. They value their reputations enough to not say something just to support the company. As far as complaining…I do not understand. We share real life experiences…a negative experience is just that…as helpful as a positive one. It helps us all get better care quicker if we have a sense of where the road is headed. I have found sharing on use of pumps and sensors, invaluable! May not sell XYZ’s pump…but, that is not why we are all here. Didn’t mean to unload on you Mark, but you just happened to be one of the last posts bringing up some of these things:) I hope there is a way to allow them to participate (because I think they are already here) but, we must be honest about what value they bring or not bring to the community.
There’s a degree to which this bridge was burned when we partnered with J&J (what was it, a year ago?) – and there are definitely legal issues to consider. One method of having a “bar” to keep out “sleazy ‘cures’ and supplements” would be to have a medical review board to OK who gets to have a “help corner” and who does not – but I think that would expose us to even more legally liability, not just for keeping out the “cantaloupe seed extract cures T1” guys but also both short- and long-term suits regarding whether or not we let in, say, GSK reps talking about Avandia (to use an example that has been in the news fairly recently).
There’s also a big difference between “promoting” and “supporting”. Telling people they should buy my (fictional) Aura-meter Glucometer which determines your current blood glucose readings by your “aura” is one thing, and telling folk who have purchased this (fictional, fictionally-approved-by-FDA) meter that they “need to use it in private in an area away from fluroescent lights that might interfere with the reading” is another. The gray area is when a company is trying to drop support for an older product and force people into purchasing a newer product that requires a different line of consumables than the one the customer/patient is using (e.g. Freestyle Flash/Mini/Papillon versus Freestyle Lite glucometers).
There may be less liability if we limit this sort of customer service/gripeline to devices (meters, pumps, CGMs) and software rather than medications (insulin, oral medications, Byetta, Symlin, etc.) – again, ask-the-legal-folk-first.
This all said and done, there already is a lot of give-and-take between corporate reps and patient-members in this community; sellers of snakeoil tend to be removed fairly quickly; and there is no way to completely ban everyone with a commercial interest in “the diabetes industry” from participation if we are open to all people with diabetes, who are family caregivers for people with diabetes, and/or who are otherwise “Touched By Diabetes”. (Let’s face it: if you work in the diabetes industry, you are by definition “touched by diabetes”.)
What we need to do is recognize reality: we cannot keep these folk out. Our liability lies in being able to limit any legal liabilities DHF might incur due to their participation. We may be able to do this by something as simple as updating or amending our Terms of Service (requiring full disclosure at sign-up) and having staff members assigned to watch/moderate the known industry contacts.
I think it would be fine as long as they identify themselves as an employee of their company. I don’t think anyone should be excluded, as long as they don’t cause problems for those who enjoy being here.
Not sure if I agree with this. If they want to donate, fine, but if it is required, I think that would sound like corporate sponsorship.
I guess I do not see legality as an issue. This site is controlled by a volunteer board. Members of that board decide content. As a rule we have no more or less legal issue with disbanding a corporate sponsorship as with a flaming post. I sense that building a fence around the corporate corner is the right thing to do. But this site has value, and it is fair for the dhf, to be compensated. Here is m sense, of it. Content is regulated by the board, and as such the board can decide to allow corporate connections or not. Sometimes, what is confused is legality and politics. In a local 501 c 3 the issue is mostly local politics. If vendor A is allowed to advertise than how can we keep out vendor b. Well in this context we have very few of these political issues. If vendor c is angry, well ok, vendor c did not pass what ever standard is established. It is not an indictment of vendor c and really vendor c really has no political pressure to put on the board. What will vendor c start a competing board? Nothing is stopping them from doing so now.
My point is that local not for profits are very different that this not for profit. My sense is that if an attorney is consulted, they will say look there is no legal restriction in allowing some and not others. I am not a not for profit attorney, but my guess is that if consulted, we will not have an issue. As far as requiring a sponsorship fee for having a corporate corner, my sense is that a fee be it $1.00 or $100,000 is as good a filter as there is. Set the fee high enough and the corporate sponsors who can support the fee, will be the ones that are needed.
just my thoughts.
rick philips
I agree there are pros and cons, but if we share our experiences with these companies it puts them in a better position to understand our true concerns and frustrations. Which can lead to better products and support. So I’m for it as long as it is very transparent. Vickie
I would think the person my be bias. I use this site to get “real person” experiences.
This is an interesting question. As I look at TuDiabetes where does this fit?
It doesn’t stand right out for me. I am sure there is a reason why the companies mentioned earlier don’t have open forums on their sites.
There would have to be something to completely separate this type of support. Do we really want to have selected clinical product support as a part of TuDiabetes? I think that should be for the companies to provide. Not to mention the legal issues if the information is taken the wrong way. I believe that is what the 1-800 numbers are for. I think there needs to be a line.
Anna said earlier in this post that she comes to TuDiabetes to get real person experiences, I do as well.
When I think of TuDiabetes I don’t think of company product support. Does it have a need? Sure it does, but where? Here? Maybe…
Nothing wrong with capitalism, and I hope you agree. Manufactures/marketers need to make money to stay in business, lets be honest.
If company clinicians disclose themselves as such, not sure how their more informed opinion could make the commetary here worse, really. In fact it would make it better and more informed on certain topics, even if slanted to the manufacturer’s view.
If we knew the members that are manufacturer/Marketer reps, the reader could draw their own opinion on the feedback posted.
Your personal interview feedbback aside, not sure how “clinical” based input could hurt the discussion here
I’m not convinced that a for-profit company will add all that much to the conversation, even with full disclosure and rules. As Jenny stated already, once you do it for one, its tough to keep the door closed on other companies and doing so could potentially open the TuDiabetes community to lawsuits. But beyond the legal consideration, we don’t join a community like this to necessarily get FDA-sanctioned recommendations or advice (or that from a doctor), but advice from people who have actually walked the walk and have real experience. I have little doubt that Pharma and medical device companies are looking lustfully at the social media forums and want to figure out how to penetrate them, but I don’t see this as a great help, frankly.
Isn’t technical assistance available to pumper uses through pump company sites & 800 numbers?
I think this is one of those slippery slope situations.
By having pump company representation, the scales are tipped in that company’s favor. Their precence is encouraging of their product, even with transparency, full disclosure & guidelines. Maybe I’ll get X pump because I see them on TuD. Of course, other pump manufacturers will approach you as well. If pump companies have a separate forum, what about pharm & CGMS experts to answer questions about their products? My feeling is that this opens the door to all companies & changes the essence of our community.
Agree that companies check out sites/blogs, which is a good thing.
So long as these company reps are transparent about their affiliation, and are on board for support services, as opposed to sales, I think it’s a fabulous idea.
It is actually a good idea to have vendors involved in the forums, as long as they can be spotted… I wouldn’t refrain from commenting/complaining on issues with the product, AND it can be used as a way to salvage a bad customer service experience on the phone, and make things right.
I wouldnt worry too much about marketing as long as these people realize we can complain about them to Tudiabetes and have them removed if they become a problem…
Iv already had experience running into representatives from Roche and Wavesense on the forums and it actually was a very value-added proposition (at least to ME, to the extent of encouraging me to do buisness with these companies because someone is hearing my feedback and listening).
Encouraging someone with knows Diabetics and their issues, even if they work for a vendor, is still knowledge for diabetecs…
as a reporter i fully support freedom of expression. but … i worry that people might censor or trim their words because they know a company man/woman is an acknowledged participant. (and yes, i know company types can sign up individually and with near anonymity right now. i also know that allowing them to join with full disclosure is a major improvement. and yes, i’ve been having a furious argument with myself about this.)
still, it’s worth considering creating a separate and distinct category for D-related vendors. It could be call Product Advice/Update or something like that. That way the companies would have a place to post (hell, they could even advertise there) and the rest of us would still have our old playground. It’s not much different than the wall separating editorial and advertising at newspapers.
it might be unworkable. but we should give it some thought.
The problem is I see segregation can be a bad thing… Theres times I can see a vendor (say a CDE), might have advice on something OTHER than their product or some insight and being relegated to only those forums with their own area could actually be a detriment since they wouln’t be able to respond freely,
Encouraging a type of q and a in their own set of forums would be fine, but allowing suitable non-advertising responses or feedback on all forums… Pushing them to stay in their own area would be a losing proposition.
As long as the provide factual info on resources and their product w/o a sales pitch and clearly ID them as company reps. with a co logo as someone suggested. It would be nice to see info, real facts, about product sometimes rather than the across the board info that come only from the TuD family. Tanspanancy is the key.