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Attention Tim MRF!!!

Forums General Melanoma Community Attention Tim MRF!!!

  • Post
    jag
    Participant

    I have noticed quite a few questions on here lately about navigating the social security/medicare quagmire.  I have luckily never experienced it.

    Is there anyway we can get a FAQ area for this topic?  

    I have noticed quite a few questions on here lately about navigating the social security/medicare quagmire.  I have luckily never experienced it.

    Is there anyway we can get a FAQ area for this topic?  

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  • Replies
      Tim–MRF
      Guest

      An FAQ on this is a great idea.  Let me see what we can do on that.

      In the meantime, we have a toll-free Help Line:  1 (877) 673-6460. 

      This Help Line is staffed by trained oncology social workers.  They have a lot of experience in dealing with social security and medicare issues, and the calls are free and completely confidential.

      Hopefully we can pull something together in the next few days as a new FAQ.

       

      Tim–MRF

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      Tim–MRF
      Guest

      An FAQ on this is a great idea.  Let me see what we can do on that.

      In the meantime, we have a toll-free Help Line:  1 (877) 673-6460. 

      This Help Line is staffed by trained oncology social workers.  They have a lot of experience in dealing with social security and medicare issues, and the calls are free and completely confidential.

      Hopefully we can pull something together in the next few days as a new FAQ.

       

      Tim–MRF

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        Sherron
        Participant

        Great Idea!   Thanks.

        Take Care,

        Sherron, wife to Jim

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        Sherron
        Participant

        Great Idea!   Thanks.

        Take Care,

        Sherron, wife to Jim

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        jag
        Participant

        Any reason there is not an obvious link explaining what the help line is for?

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        bcl
        Participant

        nothing is obvious around here 

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        jag
        Participant

        It certainly isn't.

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        jag
        Participant

        It certainly isn't.

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        bcl
        Participant

        nothing is obvious around here 

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        Tim–MRF
        Guest

        Probably a non-obvious reason.  We implemented the Help Line a few months ago and wanted to start slow before promoting it strongly, just to be sure the bugs were worked out.

        Then it was a matter of bandwidth–not enough staff time to get everything done.  I know it seems simple, but we had some staff transition, etc., etc. 

        I recently hired a a great new person–Shelby–who is trained as a health educator.  She has been swamped with our grant process for the past month, but is now digging out and trying to improve everything we do related to patient education.  (It was her idea to ask people about have one or two topical chat sessions a month.  I thought it would be a good idea to get a leading researcher on to interact with patients, or an expert on lymphedema, or someone who has gone through IL-2, etc.  Shelby's view was that before we roll out a program we should first get feedback.)

        One of the many items on Shelby's "to do" list is to find a way of promoting the Help Line better.  We announced it in the print newsletter this spring, and for about a month promoted it in a text box at the of all our letters going out.  But today when I replied to your post I had trouble even finding it on our web site.  That's not acceptable. 

        Shelby has bumped up the profile a bit, but we have more work to do.

        One thing I hope to implement soon is a screening tool for clinical trials.  The tool would allow people to input information about their diagnosis and treatment to date, then would provide a personalized list of active trials for which they are eligible. 

        We envision having this on the left side of the bulletin board screen, and I am thinking we should put in the Help Line number there as well.

        Please keep the suggestions coming.  We won't be able to implement everything, but will do as much as time and money allow.

        Tim–MRF

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        Tim–MRF
        Guest

        Probably a non-obvious reason.  We implemented the Help Line a few months ago and wanted to start slow before promoting it strongly, just to be sure the bugs were worked out.

        Then it was a matter of bandwidth–not enough staff time to get everything done.  I know it seems simple, but we had some staff transition, etc., etc. 

        I recently hired a a great new person–Shelby–who is trained as a health educator.  She has been swamped with our grant process for the past month, but is now digging out and trying to improve everything we do related to patient education.  (It was her idea to ask people about have one or two topical chat sessions a month.  I thought it would be a good idea to get a leading researcher on to interact with patients, or an expert on lymphedema, or someone who has gone through IL-2, etc.  Shelby's view was that before we roll out a program we should first get feedback.)

        One of the many items on Shelby's "to do" list is to find a way of promoting the Help Line better.  We announced it in the print newsletter this spring, and for about a month promoted it in a text box at the of all our letters going out.  But today when I replied to your post I had trouble even finding it on our web site.  That's not acceptable. 

        Shelby has bumped up the profile a bit, but we have more work to do.

        One thing I hope to implement soon is a screening tool for clinical trials.  The tool would allow people to input information about their diagnosis and treatment to date, then would provide a personalized list of active trials for which they are eligible. 

        We envision having this on the left side of the bulletin board screen, and I am thinking we should put in the Help Line number there as well.

        Please keep the suggestions coming.  We won't be able to implement everything, but will do as much as time and money allow.

        Tim–MRF

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        jag
        Participant

        Any reason there is not an obvious link explaining what the help line is for?

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        jag
        Participant

        Oh yeah, I would also reccomend part of a person's profile have the doctor who treated them in it.  I know this website is afraid of being sued for slander if people were to trash doctors.  If you could look at how someone is doing with a particular doctor, then over time, the good doctors should speak for themselves-people would be less likely to pick doctors that didn't followup well. .  We should also have an anonymous rating system for  treatment centers, and doctors.    

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        jag
        Participant

        Oh yeah, I would also reccomend part of a person's profile have the doctor who treated them in it.  I know this website is afraid of being sued for slander if people were to trash doctors.  If you could look at how someone is doing with a particular doctor, then over time, the good doctors should speak for themselves-people would be less likely to pick doctors that didn't followup well. .  We should also have an anonymous rating system for  treatment centers, and doctors.    

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