PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange

Back in March last year, we shared on the blog about a new grant from the Robert Wood Johnson Foundation that would help support two patient-led projects on our Open Research Exchange (ORE) , a platform that brings patients and researchers together to develop the most effective tools for measuring disease. We were overwhelmed by the response from the community, and we’re excited to share that one of those projects is very close to being completed.

Tam is living with multiple sclerosis (MS), and she’s been a PatientsLikeMe member for more than 4 years. After her diagnosis and experiences with her doctors not “getting” what pain means to her, Tam decided to create a new tool for anyone who might be experiencing chronic pain. Her idea is to build a measure that can help doctors better understand and communicate with patients about pain.

Watch her video above to learn about her journey and listen to her explain her inspiration behind the new ORE project.

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14 thoughts on “PatientsLikeMe member Tam builds first-ever ‘by patients, for patients’ health measure on the Open Research Exchange”

  1. Tam, i’m so glad you are doing this. i’ve had chronic pain for 50 years and the pain scale, in my opinion, has never been a helpful way to gauge the experience patients are having with pain. i actually talked with a pain specialist who also defined “10” as walking down the street with a crown of thorns on your head while dragging an enormous cross, as a way to help his patients put things in perspective. but even if patients use that as a gauge, the scale does not realistically measure what it is meant to measure. i would love to review your proposed measure if it’s something you can share.

  2. I am looking forward to using the new tool you have put together. It sounds like it would explain our pain levels better. The 1-10 scale that is used now doesn’t really cover us very well. We all feel that but thank you for coming up with a new scale. Can’t wait to use it!
    Thanks, Sandy Jones

  3. I would like to know what Tam has to say about pain. As my computer has no sound is it possible to get a written text? Thank you, Steve Grier (piñata)

  4. Wow! I really like what you are saying here in your video. I totally agree that the current pain rating system is not very effective in relating to a health care person the pain I feel. It is so hard to accurately convey to another person what my chronic pain feels like and how it can change from day to day. I am excited to see the results of your work!

  5. What a great idea. I have Rheumatoid Arthritis – I just want the energy to get to work on time. I want to be pain free at least two days a week. I don’t want to be worn out just getting dressed and ready to go to work. I want a cure and a treatment that gives me back my life.

  6. I think this is a great idea. I have always found the pain scale 1-10 very hard as Tam says where do you start with what is the worse pain mine was child birth but now is fibromylgia pain why because of its Continueation with child birth it finishes and is not forgotten but when you are given you baby it’s has a perpus and it’s not as bad. Where with fibromylgia is concent and no reward at the end as there is no end. It is horrible. I’m sure this is the same for other chronic pain conditions. That’s why I think this new chart that Tam has designed will help. I just hope it makes it to the UK.

  7. As a nurse almost daily I would explain to patients the 0-10 pain scale. Patients have a hard time rating their pain this way. The face pain charts are a little easier. On a personal level I would never say my pain is a 10. In my mind pain at a 10 level would belong to a cancer patient. I have neuropathy, fibromyalgia as psoriatic arthritis. The pain that I experience I have no relief from. Patients do need a relatable way to express their pain.

  8. I want to thank you for coming up with such a brilliant idea. I can hardly wait to find this site I can immediately start using it. The pain scale of 1-10 was not worth the paper it was written on. Even medical professionals had a difficulty describing its meaning. For instance some would try to explain level 10 as pain so intense you practically were passing out. Others would describe it as the worst pain you’ve ever experienced. This is not an acceptable plan as it meant different things to different people. Your idea seems much better and less confusing to either party concerned. Once again thanks so much for the no nonsense plan of explaining pain levels.

  9. Thank you Tam, I hope that it works… it will certainly be better than the current 1-10 scale.

  10. You have no idea how wonderful it is to actually (and finally) be able to put a voice to your lovey face! What a great presentation and I loved seeing you “in person”. Thank you so much for doing this; giving us a peek into your real life and for caring so much about all of us. You’re the best!

  11. I have lower back pain and recently had a MRI done on the lumbar area of my back. The results showed really nothing to be alarmed about. I have my left arm, from elbow down to my hand feels cold at times with numbness. My left leg has pain sometimes, not all the time, but the left side of my foot with my pinky toe and the two in middle are numb. My doctor has set up a appointment with a neurologist to have some test done, I think it’s the same thing that they did to my hands when they were checking for carpal tunnel. It’s where they stick you with needles, yep I had both hands done years ago. Tam, I listened to your video, and my symptoms sound a lot like yours, my appointment is not until March 9th, I was wondering did they give you a MRI of your brain too? Any information that you can share about your experience is much appreciated. Thank you

  12. Tam, Thank you for taking your idea and moving forward with it. I don’t know why something hasn’t been developed ages ago by someone in the medical field!! As seen here by the comments, not one person who has been asked to rate their pain using the 0 -10 scale (but with no guidelines as to what that means, except our own interpretation) feels this is a valid or concrete way to collect their pain level information.
    You are so right, the pain level is not just about the pain we feel but how it affects our lives. I am looking forward to seeing what the final tool looks like and even more, being able to use it.

  13. As the mom of a kid with a bleeding disorder, we often have to remind him that the scale is designed such that zero stands for no pain. In his mind, and in his world, 0= ignorable levels of pain. Our favorite doctors and nurses are the ones that stop and listen, when he tries to explain to them how they need to think about pain for somebody like him. For the rest, we just have to hope that, whatever’s going on that day, he has the resources to translate his experience into their paradigm.

    If you’d like some help from a teenager, let me know! I’m sure he’d be delighted to offer feedback.

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