Participating ina Panel on Cancer Care - Share your thoughts!

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Nel138281
Nel138281 Member Posts: 2,124
edited October 2015 in Advocacy

I have been asked to be part of a panel on Friday at the Center for Future Technologies for Cancer Care at Boston University. They are hosting a "hack-a-thon". Participants include students, engineers, scientists, industry and clinicians (and this year patients) The goal is to bring together individuals to get together and exchange ideas to hack together innovations for cancer care. Includes but is not limited to - Idea creation, prototype devices and mobile apps Questions I will be asked to address---

What has been the most difficult problem faced as a patient?

What has been the biggest technical problem?

What breaks most often in care? Hardware? Software? Communication?

Please share your thoughts - the more input,the better!


Thank you for your ideas!!!

Nel

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited September 2015

    bump

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  • lisa-e
    lisa-e Member Posts: 819
    edited September 2015

    From a patient's point of view I suspect paying for treatment would be most difficult problem. After that I suspect dealing with the side effects of treatment. From my sceptic's point of view, I suspect this panel will not address those issues, because they are not amenable to being solved by an app.

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  • rainnyc
    rainnyc Member Posts: 1,289
    edited September 2015

    Insurance. It's so necessary, and so quixotic in terms of how the plan you have determines the care you'll get.

    As we head into open enrollment, and as I am forced to shop for a new plan because the insurance company I have has gone out of business, I need to sort through myriad options for myself, DH, and DS. We are self-employed and make a decent living, but the options available to us are A. bewildering B. not great C. have gotten much more complicated now that I have been diagnosed with BC (which was not the case last fall during open enrollment). I did an enormous amount of research last fall, and now it's even harder.

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  • DayLily15
    DayLily15 Member Posts: 144
    edited September 2015

    hi nel, your meeting sounds very interesting.

    besides loss of scheduling my own life to the cancer care schedule.

    i have noticed that i have lots and lots of pamphlets that repeat and repeat the same knowledge. and only parts of each apply to me. some of the knowledge is from 2004 for example, so the info is dated and repeated. i have piles of papers and booklets. it would be nice to have an app that each doctor and nurse or pharmasist can check i have what i need to know, and up date it directly for me. not my results per se but tell me what i need to know about breast reconsruction only if im doing that surgery, and make sure i know about neulasta if thats on the schedule. wading through general info has been exhausting and DrGoogle is a ghoul.

    good luck with the conference.:)

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited September 2015

    1. Lack of any type of emotional or psychological support. I think that has changed a bit since I was diagnosed in that oncs need to address it now.

    2. If your diagnosis process does not fit the standard pattern you get lost in the shuffle with zero support. Need something to catch the outliers.

    3. Communication - absolutely positively.


    Thanks Nel!

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited October 2015

    Thank you, many heads are better than one! I am looking forward to it, a different type of event. I will let everyone know how it goes!

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  • Larkspur
    Larkspur Member Posts: 88
    edited October 2015

    Really glad to see that your opinions are being sought here, Nel, and taken seriously, one hopes. Here are a few of my thoughts, for whatever they're worth:


    What has been the most difficult problem faced as a patient?

    Getting straight answers!--especially from my breast surgeon, for whom vagueness seems to be a default. I'm still trying to understand the connection between the low-grade DCIS with which I was initially diagnosed and the invasive cancer that was discovered the day before my scheduled lumpectomy for the DCIS. How exactly were the two related, if at all? Did the IDC develop from the DCIS? The best I could get out of her was, "um, they were proximate." I had more questions along these lines for her at my last follow-up visit, but she was already backing out of the room as I was reaching for my notebook.
    I've decided that if she pulls that routine again with me, I'll get into my most teacher-ish mode, address her by her first name (she's twenty to thirty years younger than I am), and tell her that it's OK to say "I don't know."

    What has been the biggest technical problem?

    Having an MRI postponed twice because the machine was "down." That was at an "imaging center;" I switched to having all such testing done at a hospital, with no further problems, at least so far.

    What breaks most often in care? Hardware? Software? Communication?

    Communication, definitely. See above! I would prefer my doctors to be candid and admit ignorance to their being vague, or to resorting to condescension, something I think we've all experienced.



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