5 Responses

  1. Carmen Gonzalez
    Carmen Gonzalez March 16, 2012 at 4:32 pm | | Reply

    Thoughtful as usual, Allison. If there are ever to be true advances in medicine, an open dialog between pharma and patients must take place. Patients know what they need and if pharma truly listens, it is a precious opportunity to transform clinical research and product development. Cheers to you for raising the most important ingredient of all: respect for each other’s humanity. Let our compassion guide our approach and priorities.

  2. Manny Hernandez
    Manny Hernandez March 16, 2012 at 9:09 pm | | Reply

    Great post, u guys! Know if the session was archived?

    This post has a couple of links to interviews where we discussed our thoughts on best practices with regards to this topic:
    http://www.diabeteshandsfoundation.org/2011/11/two-interviews-with-dhf-president-manny-hernandez/

    One new thing I would add:
    Pharma’s regulation and restrictions (per FDA, etc.) is Pharma’s to deal with. They need to weigh in to what extent the interaction with patients is going to remain natura and conversationall. If disclaimers are bound to take over human communication in interactions with patients, it is best to not engage. It will likely backfire and become a waste of resources and everyone’s time.

  3. Scott E
    Scott E March 17, 2012 at 6:12 pm | | Reply

    I think the key word in your quick poll is “interact”. That word, by definition, implies a two-way conversation. Contribute, but also listen. Consider refining your products or services based on our feedback. Convince us that you, as a pump manufacturer (for instance) understand the bigger picture by engaging in conversations about MDI.

    As for Manny’s above comment, I agree that we shouldn’t live in a word of disclaimers. But, as far as I’m concerned, there are disclaimers and disclosures. A casual blogger who receives free products for evaluation (and possible discussion) can be protected by a disclaimer. A trained professional acting on behalf of a business should reveal themselves as such via a disclosure, and is not entitled to the same protections as the schooled-by-experience blogger.

  4. Marilyn Mann
    Marilyn Mann March 17, 2012 at 6:34 pm | | Reply

    Thanks for mentioning me Allison. I actually wasn’t the one who started the Familial Hypercholesterolemia (FH) Discussion Group on Facebook. It was a British FH patient who started it. I am an administrator of the group, though. We have members from all over the world, including several people with homozygous FH, the most severe form of FH that occurs in 1/million people. Heterozygous FH, which is what my daughter has, occurs in 1/500 people. Cheers, Marilyn

  5. Emily KG
    Emily KG March 20, 2012 at 1:45 pm | | Reply

    While I’m not your typical diabetes patient, I do technically fall under that broad category given that I have Cystic Fibrosis-related Diabetes as well as Cystic Fibrosis, of course. Anyway, I’d like to throw another option into the mix:

    I encourage pharma to interact with patients and families via social media and otherwise provided that they do so transparently and are completely forthright and honest about their editorial control and financial relationships.

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