Attending Partnering with Patients…as a Patient

Posted March 14th, 2013 by

Last Friday we heard from PatientsLikeMe Head of Community Liz Morgan about her experiences at the Institute of Medicine’s Partnering with Patients workshop.  Today we hear from multiple sclerosis (MS) patient Laura Phillips, a PatientsLikeMe member who spoke at the event. 

As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director, invited me to speak for the patients of PatientsLikeMe as her co-presenter.

IOM Workshop - LadyMac

I had everything worked out to exactly what I wanted to say and right in front of me so I wouldn’t forget, but I couldn’t tell you what I even said. LOL.  I know I didn’t want to look down and read, it needed to come from the heart and what I could remember.  I thought I’d freeze and not be able to say a word, but after introducing myself I felt really comfortable with looking at the audience and speaking.  Even with Liz Morgan, Head of Community at PatientsLikeMe, taking pictures, I was able to talk.

There was a large, diverse group of people attending and presenting. I wish I could do a better job of portraying the event, but it was large. Healthcare, patients and families were the subjects of the workshop. Lots of ideas were put forth on everything from how to improve the healthcare system to how to make patient records available to the patients electronically, such as recording doctor visits and putting them on a CD for the patient to keep and play for other family or friends who were not at the appointment.

Recording doctor visits is something I’d love to see. How many times have you left the doctor’s office and each person present remembers the visit differently? Or you can’t remember if you discussed a particular test or not?  I did push the importance of the patient keeping hard copies of ALL tests, doctors’ notes, you name it, get a copy.  I would love to see the ability of viewing my records electronically so I could view my results quicker, make notes to ask the doctor, etc. There was also talk of submitting questions for the doctor in advance for the doctor to review and be more prepared for the visit. Also, the staff would print a copy of your submitted questions so you would have it in hand and remember what to talk about.

There was way too much to compress into a brief review of the event, but there were a lot of really good, logical ideas presented.  How many of the things discussed will eventually become a reality? Only time will tell. Privacy will be a major roadblock I fear.  Everyone that I heard talk did agree that collecting data from the patients themselves was important, and PatientsLikeMe was mentioned more than once by others there.

IOM Workshop - Sally and LadyMac Closer

Sally and Liz were a delight to meet and spend time with, as we are all passionate about PatientsLikeMe and how it has helped many of us through the years.   Really had a great time, and I wish I could have spent more time with Sally and Liz, but the time we did spend talking was productive and invaluable.


3 Comments

  1. FMS needs to stop being a orphan disease and the Syndrome needs to be changed to Auto Immune. There also needs to be a more thorough disclosure on the drugs we are placed on. Weird side effects are cropping up, that is nearly impossible to report to the NON-HUMAN assisted FDA bad drug hot line. Most of the drugs like Lyrica, kill your sex drive, as does Cymbalta, not to mention the Pea SOUP brain fog they create.

  2. Interesting. I have a nice, large print out for my PCP of “no-no” meds and a monograph about Myasthenia gravis. He’s very knowledgeable, and when I come in with my iPhone full of questions, blood tests I’d like added(they hadn’t given me the full report. They do now), they are most happy to do.
    On the other hand, I was sent to a cardiac testing center, where, in spite of being told REPEATEDLY, that I had MG, it seemed to be shrugged off, except for the man who was actually inserting the IV. He explained what he was doing and why, and seemed to understand my concern. I was given the chemical test and isotope IV(and no one said a word about IVs before this) for CT scan before and after. I still thought I would be doing treadmill until something else was injected after the first CT scan. Everything started to go limp, but yes, did recover. As they were an hour late even starting with me, I missed a neuro visit I had scheduled(5 hours should have been enough time, yes?)as I was beginning to feel weaker.
    It was the next day that was the problem. I lost the use of my left leg and fell 3 times in an hour. The last one was by the house and I had to crab walk backwards to the sofa so I could pull myself off the floor. I got in to the neuro immediately, and fell on him too. Immediately put on Imuran which is sorta helping, but it takes time to kick in.
    I’m off the walker now, and motivate for most of the day around the house on my own, with a lot of sitting down. Outside I use a cane. Shopping, a rollator so I can sit when my leg muscles tire, or an electric cart if the store has one. Plus a handicapped sticker for my truck. I will probably never ride my pony again, but at least he drives, and with help harnessing him and hitching him, can at least do that. My neuro basically told me my old life is over, get used to it.
    My beef: doctors who can’t admit (or don’t care?) they don’t know and carry on anyway like they do. This man knew *nothing* (or didn’t care) about MG and if he would be exacerbating things. I’m a big believer in being involved in my own care. I was a vet nurse, Lisenced by NY State so that may have something to so with it. Yet, I let myself down by not asking questions, not acting on my doubts about these people. Now I have a ton of information that I will demand doctors read, and printouts to give them regarding medications. Wish there was more up to date than 2007 though.
    And that’s my rant for today. Thank you for listening.

  3. I have been a member of Patients Like Me for a little over 4 years now. I can’t begin to tell you how much I have learned from the other members.

    It has definitely altered the way that I treat my MS, from the Neuro that I use to the OTC meds that I take.

    The questions that I ask when I have my visits with the MS Neuro are a lot more in depth and personal because of the knowledge that I have gained.

    I also have a greater relationship with my GP because of the things that I have learned on here. He is my go to Dr.when I don’t need my Neuro, and I have been able to take a lot of information to him and he has been able to help me and learn what helps ME and my MS because I can go in to him with knowledge.

    I don’t even bother going to other sites for information. I just stay with PLM.

    – Jan (aka GramaJan)

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