Healthcare providers surveyed about which data to use

cstehansen
cstehansen Posts: 1,984 Member
http://catalyst.nejm.org/effectiveness-healthcare-data-survey-analysis/?utm_campaign=Connect Weekly&utm_source=hs_email&utm_medium=email&utm_content=45387194&_hsenc=p2ANqtz-8x-qFEa0h5-O1h9P6TV8bxN8TXD45oiXPl1N9hiVXqrvqMYCdj8KQznc6iOyHB5BRxG2dtt55QyyUrX9r1GXdvshtzKg&_hsmi=45387194

This is a recent article from the New England Journal of Medicine online. It asked those in the industry where they currently see getting reliable data and where they expect to get it in 5 years.

I see the good and bad in this, but I am choosing to focus on the good. In my opinion, the fact that they see a significant rise in the importance of patient generated data along with a decrease in pharmaceutical data indicates more of a willingness to utilize what actually works and not just what the visiting pharma reps are selling them.

Maybe I am too optimistic, but a guy can dream, can't he?

To make this work, we as patients need to be honest with doctors about things like our WOE so they can see with their own eyes the correlation between this WOE and improved health.

Replies

  • baconslave
    baconslave Posts: 7,018 Member
    bump
  • KnitOrMiss
    KnitOrMiss Posts: 10,103 Member
    edited March 2017
    cstehansen wrote: »
    http://catalyst.nejm.org/effectiveness-healthcare-data-survey-analysis/?utm_campaign=Connect Weekly&utm_source=hs_email&utm_medium=email&utm_content=45387194&_hsenc=p2ANqtz-8x-qFEa0h5-O1h9P6TV8bxN8TXD45oiXPl1N9hiVXqrvqMYCdj8KQznc6iOyHB5BRxG2dtt55QyyUrX9r1GXdvshtzKg&_hsmi=45387194

    This is a recent article from the New England Journal of Medicine online. It asked those in the industry where they currently see getting reliable data and where they expect to get it in 5 years.

    I see the good and bad in this, but I am choosing to focus on the good. In my opinion, the fact that they see a significant rise in the importance of patient generated data along with a decrease in pharmaceutical data indicates more of a willingness to utilize what actually works and not just what the visiting pharma reps are selling them.

    Maybe I am too optimistic, but a guy can dream, can't he?

    To make this work, we as patients need to be honest with doctors about things like our WOE so they can see with their own eyes the correlation between this WOE and improved health.

    Luckily, I have a good Endocrinologist, and my soon to be former PCP is a low carb fan, in fact it is the two of them who pushed me toward exploring this WOE. I'm going to have to find a new, local PCP since I moved, and I've been putting it off for AGES!

    EDITED TO ADD: In fact, my Endo has taken some of my experimenting with timing of meds, and supplements added to advise other patients who'd had similar issues to mine... He LOVES crowdsourcing info and treating to symptoms, since he knows not everything is clear in lab results.
  • RalfLott
    RalfLott Posts: 5,036 Member
    I doubt I'm alone in having been through n=1 trials from which I've drawn conclusions that later proved heinously irreproducible. If I can't even generalize my conclusions to me, I can see some difficulty in trying to apply patient data to other people. :/

    But it's almost impossible to avoid relying on data generated with the help of interested funding. Apart from the pharmaceutical companies' own research, the studies led or funded by "charities" and colleges aren't uniformly reliable, as they're often dependent on outside funding as well.

    Personally, I'd rather donate to a kickstarter campaign for NIH's independent funding of clinical trials than give a plugged nickel to the ADA.

    -->> rant warning <<--

    The ADA is practically a vacuum for spare change from industry and advertisers. Just looking at a single year's (2014) IRS informational return for the largest of the various ADA organizations, it pulled in $4.5 million in "booth rentals" and another $5.5 million in advertising (possibly including its partnership with Coca-Cola...),* and research sponsored by the ADA is often "co-funded" by such philanthropic institutions as the Beef, Egg, Drug & Dairy League. The ADA's figures aren't typical, of course, though they're surely the envy of many a charity exec.
    ______
    * http://990s.foundationcenter.org/990_pdf_archive/131/131623888/131623888_201412_990.pdf
    In the ADA's summary of its advocacy efforts, prevention gets a short mention, though the word "cure" does not appear.

    "The American Diabetes Association's advocacy efforts and achievements are at the core of creating effective and lasting change for people living with, and at risk for, diabetes. The Association's advocacy efforts give people with diabetes, their families, and health care professionals the power to influence public policy issues that affect people with diabetes at the local, state, and national levels.

    From Capitol Hill to state houses to courthouses across the country, the Association's Diabetes Advocates continue to drive momentum in the ongoing fight to Stop Diabetes.
    The primary goals of the American Diabetes Associations Government Affairs and Advocacy effort are:
    • To increase federal and state funding for diabetes prevention, treatment and research
    • Prevent diabetes through advocacy of increased funding and raising awareness on national, state and local levels
    • Improve the availability of accessible, adequate and affordable health care
    • End the discrimination people with diabetes face at school, work and elsewhere in their lives."
  • WG_Keto
    WG_Keto Posts: 33 Member
    I work in Helath Information Management, definitely an interesting read....
    It's an ever changing field. Unfortunately they are limited by willingness to participate, and truthfulness as far as Patient generated data.
    Also because so much is done online/on computers/e-charts and many of the age ranges of people who are willing to participate aren't the most computer literate.

    I know younger people especially men aren't going to go to the Dr. as often, even if needed and they are gonna play down anything going on with them health/diet etc.
  • cstehansen
    cstehansen Posts: 1,984 Member
    RalfLott wrote: »
    I doubt I'm alone in having been through n=1 trials from which I've drawn conclusions that later proved heinously irreproducible. If I can't even generalize my conclusions to me, I can see some difficulty in trying to apply patient data to other people. :/

    But it's almost impossible to avoid relying on data generated with the help of interested funding. Apart from the pharmaceutical companies' own research, the studies led or funded by "charities" and colleges aren't uniformly reliable, as they're often dependent on outside funding as well.

    Personally, I'd rather donate to a kickstarter campaign for NIH's independent funding of clinical trials than give a plugged nickel to the ADA.

    -->> rant warning <<--

    The ADA is practically a vacuum for spare change from industry and advertisers. Just looking at a single year's (2014) IRS informational return for the largest of the various ADA organizations, it pulled in $4.5 million in "booth rentals" and another $5.5 million in advertising (possibly including its partnership with Coca-Cola...),* and research sponsored by the ADA is often "co-funded" by such philanthropic institutions as the Beef, Egg, Drug & Dairy League. The ADA's figures aren't typical, of course, though they're surely the envy of many a charity exec.
    ______
    * http://990s.foundationcenter.org/990_pdf_archive/131/131623888/131623888_201412_990.pdf
    In the ADA's summary of its advocacy efforts, prevention gets a short mention, though the word "cure" does not appear.

    "The American Diabetes Association's advocacy efforts and achievements are at the core of creating effective and lasting change for people living with, and at risk for, diabetes. The Association's advocacy efforts give people with diabetes, their families, and health care professionals the power to influence public policy issues that affect people with diabetes at the local, state, and national levels.

    From Capitol Hill to state houses to courthouses across the country, the Association's Diabetes Advocates continue to drive momentum in the ongoing fight to Stop Diabetes.
    The primary goals of the American Diabetes Associations Government Affairs and Advocacy effort are:
    • To increase federal and state funding for diabetes prevention, treatment and research
    • Prevent diabetes through advocacy of increased funding and raising awareness on national, state and local levels
    • Improve the availability of accessible, adequate and affordable health care
    • End the discrimination people with diabetes face at school, work and elsewhere in their lives."

    One of the questions on the the ADA tax forms (question 6 on part IV) is "Did the organization maintain any donor advised funds or any similar funds or accounts for which donors have the
    right to provide advice on the distribution or investment of amounts in such funds or accounts?" to which they answered "yes." Makes you wonder who provided the funding and how it was spent....hmmmm.

    As for income, I think the bulk of concern is in the $58 million from fundraising events. You know how these events always have their corporate donors. That makes up nearly 30% of all their revenue. Many of those fundraising events wouldn't even happen or wouldn't be worth the time of the organization if it were not for the corporate sponsorship.

    Don't get me wrong. I think corporate philanthropy is good. However, given the advice given by the ADA and the companies with whom they associate, I think there is at least reason to raise an eyebrow at quid pro quo especially given the answer to question 6 in part IV.