Electronic records

daisy366
daisy366 Member Posts: 1,458 Member
edited March 2014 in Uterine Cancer #1
Several months ago I remember a segment on NPR about this new technology which is being piloted at Geisinger in PA where Linda is getting treatment- and maybe other locations.

Linda, you might want to inquire about this. With this we are supposed to be able to access our medical records online anytime. This would certainly help us look up things, save paper. I don't know how they will handle giving us "not so nice news". But it should prove interesting.

Linda, maybe you can be the pioneer for us here with this new technology. have they mentioned this to you at all?

Mary Ann

Comments

  • Songflower
    Songflower Member Posts: 608
    We use EMR
    I work for Sentara a big medical group. We use electronic medical records and patients can access alot of their labs. There are certain things you cannot access: tumor markers, scan reports, etc. I think it is best to get that information when you are with your Doctor and have support for bad news. I believe that is the reason our group limited it. I am an NP and can access all my tests. Sometmes it's hard; I do not look at my scans; I wait until I have my Doctor around as I know I need the support. With my breast tumor makers I didn't peak; I just asked him if they were OK and he would say no trends. I have accessed my CA 125 and can't decide if I should really do this anymore. I think it would be very hard to get bad news when you are alone at home at the computer.

    Diane
  • Gunhild
    Gunhild Member Posts: 36
    Privacy
    My biggest concern with electronic records is the privacy issue. I was part of a task force working on electronic record keeping in NYS quite a few years ago. This is a big issue. As far as accessing my own records I don't think I would do that. I have a pretty good background to enable me to put things together but much prefer clarifying my impressions with someone else who has even more knowledge than I do. It is too easy to jump to conclusions especially from lab tests. That's why we pay the MD's the big bucks so they can interpret the lab and other tests in terms of the individual patient. There is no one size fits all in medicine.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Gunhild said:

    Privacy
    My biggest concern with electronic records is the privacy issue. I was part of a task force working on electronic record keeping in NYS quite a few years ago. This is a big issue. As far as accessing my own records I don't think I would do that. I have a pretty good background to enable me to put things together but much prefer clarifying my impressions with someone else who has even more knowledge than I do. It is too easy to jump to conclusions especially from lab tests. That's why we pay the MD's the big bucks so they can interpret the lab and other tests in terms of the individual patient. There is no one size fits all in medicine.

    I do use MyGeisinger, their online patient record system.
    I am unable to access my scans online, but I can get my detailed blood work and CA125s, etc. The research they are doing at Geisinger will have a control group that gets the information I can access online, compared against a test group that will have access to all physician NOTES and all diagnostic imaging, everything. The experiment is to see if that wide-open transparency makes patients feel empowered, or scares them with too much information, and if it improves the patient/doctor relationship and ultimately better health outcomes. I hope that I am chosen to be included in the study, in the 'wide open access' group. I'm not sure they have secured grant funding yet to start this project. I was encouraged to interview to be possibly be the grantwriter for that research project, but I didn't apply as I don't usually take research fundraising assignments because of the steep learning curve for each proposal.
  • california_artist
    california_artist Member Posts: 816 Member

    I do use MyGeisinger, their online patient record system.
    I am unable to access my scans online, but I can get my detailed blood work and CA125s, etc. The research they are doing at Geisinger will have a control group that gets the information I can access online, compared against a test group that will have access to all physician NOTES and all diagnostic imaging, everything. The experiment is to see if that wide-open transparency makes patients feel empowered, or scares them with too much information, and if it improves the patient/doctor relationship and ultimately better health outcomes. I hope that I am chosen to be included in the study, in the 'wide open access' group. I'm not sure they have secured grant funding yet to start this project. I was encouraged to interview to be possibly be the grantwriter for that research project, but I didn't apply as I don't usually take research fundraising assignments because of the steep learning curve for each proposal.

    I love going to the hospital and getting all my results as soon
    as they're ready. Waiting for an appointment to go over them just doesn't give me enough time to be completely sure of what is being said, or to go online and research and think about things. I need time to know what I need to get the answers to. I would much rather get any shock by myself. If I get in the doctor's office, i pretty much don't hear much after that initial shock. I found about the UPSC diagnosis at the three week checkup after surgery. In the hospital I was told everything should be fine as it was only uterine and hadn't gone thru the myometrium or whatever it's called. That's why they didn't remove any lymph nodes. So I was happy as could be when I walked into the office. Had told my family they could all relax and save their money, as they had all offered to fund any chemo as I didn't have money. Anyway, that blindside was the worst day of my life, well not the worst, there have been much worse days than that. But it was way up there. My doctor told me I would die without chemo cause it was pap serous and the tumor was big. I hate that guy. He didn't have any information on how well the chemo worked for the women who did take it. How can you be an oncologist, treat women with chemo all the time and not know how well it's working. How can you improve anything that way????

    Sorry, I digressed AGAIN! I vote for open access, if that's what the patient would want. It would give access to those that want it, and those that didn't want it could wait til their appointments.
  • kkstef
    kkstef Member Posts: 688

    I love going to the hospital and getting all my results as soon
    as they're ready. Waiting for an appointment to go over them just doesn't give me enough time to be completely sure of what is being said, or to go online and research and think about things. I need time to know what I need to get the answers to. I would much rather get any shock by myself. If I get in the doctor's office, i pretty much don't hear much after that initial shock. I found about the UPSC diagnosis at the three week checkup after surgery. In the hospital I was told everything should be fine as it was only uterine and hadn't gone thru the myometrium or whatever it's called. That's why they didn't remove any lymph nodes. So I was happy as could be when I walked into the office. Had told my family they could all relax and save their money, as they had all offered to fund any chemo as I didn't have money. Anyway, that blindside was the worst day of my life, well not the worst, there have been much worse days than that. But it was way up there. My doctor told me I would die without chemo cause it was pap serous and the tumor was big. I hate that guy. He didn't have any information on how well the chemo worked for the women who did take it. How can you be an oncologist, treat women with chemo all the time and not know how well it's working. How can you improve anything that way????

    Sorry, I digressed AGAIN! I vote for open access, if that's what the patient would want. It would give access to those that want it, and those that didn't want it could wait til their appointments.

    Voting for Wide Open Transparency
    Claudia....I am with you on this one! I go right to the hospital to get all of my reports. They are almost always available the next day (although the drs. office always indicates it will be at least a week!!!). I too, like to know IN ADVANCE... It is also interesting to read different physician's History and Physicals. Am not sure WHERE they got some of the info on MY H&P that is NOT correct!!! Makes me want to get out my red pen and make corrections. Generally it has not been anything that makes a difference in my treatment, but nonetheless, if anyone ever compared them they would think I was a poor historian!!

    Karen