What Drives Patients to Get Engaged in Healthcare?
Did you ever forget what you were about to say? Last year when I testified at an FDA advisory hearing, I couldn’t even remember my name. I swear I could feel my heart leaping six inches in front of me. It was unexpected because I’d recited my five-minute speech dozens of times from memory. How else could I fit so many important details into such a short time?
When I finished, I wanted to hide under a rock. On the other hand, I wanted to get back up there and do it right for the disinterested committee. After all the FDA “Arthritis Advisory Committee” only scheduled 20 minutes of the one-hour public comment period. A friend texted me: “You did ok” and “You’re dealing with the Feds. What did you expect?” I still haven’t been able to bring myself to watch that video.
But I have spoken in public several times since then. And made a lot more sense I think.
Last month I spoke at the Institute of Medicine at a workshop “Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement.” I was honored to be there – enough to make me more nervous than usual. Murphy made the clicker fail half the time and my voice was awful… But I remembered at least 90 percent of what I wanted to say.
I was asked to talk about what drives patients to get engaged in learning about their conditions and sharing in healthcare decisions. Lots of the topics will be familiar to you. From my concluding slide, patients need and deserve:
- Evidence that’s relevant & reliable
- Engagement that’s real & respectful
- Encounters that are responsive & result-oriented
You can watch the Q & A here at this link.
Postblog: My friend Leslie was my traveling aide this trip – lucky, happy me. Hopefully, she’ll have a guest post for you with some of the insights she’s gained traveling with me. We spent a day and a half on Capitol Hill again so there’s plenty coming up to discuss about our how we can all make a difference on that front.
Edit: 12/6/13: Final IOM project from workshop: URL iom.edu/partneringwithpatients
Recommended reading
- Attending an FDA Hearing for Pfizer’s JAK: Tofacitinib CP-690550
- Lessons from a Dumb Phone & a Disabled Computer
- Rheumatoid Arthritis Help with Bags and Books
- Mind-boggling! – Aftermath of Tofacitinib FDA Hearing Part 2
I forget the words for what I want to say all the time (is it the methotrexate?) and public speaking requires courage and calm! I’m sure you did fine. Sometimes good enough is good enough. We do our best everyday. Some days are better than others. You do a yoeman’s job for us – thank you. This helps me. http://youtu.be/j-cVn_8MY0g
Just so readers know – this is a different Leslie! But one I’m getting to know pretty well here. The youtube video you left was a nice way to wake up. Thanks!
I was wondering why it sounded like you didn’t see my video here on the post – then I got on the computer & saw it missing. It was here at 2am when I last saw it. Dunno what happened after that – but I just re-added it here. 😛
LOVE this….Thank you for your fight! You did a great job!!!!!
“I was asked to talk about what drives patients to get engaged in learning about their conditions and sharing in healthcare decisions.”
Why would they even ask such a question? I can’t imagine not wanting to know about my health conditions, and not having a very real voice in how I am treated. I’m the one who gains all the benefits and assumes all the risks of any treatment. I’m the one who pays for it. The days of “doctor knows best” are long gone.
You were much more articulate than you give yourself credit for. I hope they realize that there are many more people out there who share your desire for a partnership rather than a dictatorship!
Great job! I am so glad you are OUR voice. You honestly did a great job, I don’t think I could have done that with out bursting into tears because this disease is so devastating and no one understands that other than those who live with RA. Thank you
You did a great job. I have to thank you for keeping me sane. I have developed so many other problem with mt feet and skin and my doctor just shakes his head and says I don’t see it. I never know what area it will attack next. When I read your blog it helps me to know Im not crazy.
Great job!
Thank you Kelly. I really didn’t expect it, but that really moved me and made me cry! You were up there speaking for ME and all of us with RA who have no voice. I can’t even stand up for myself in a doctors office. Excellent job. Thank you!
It’s much harder in a doctor’s office. I have a hard time too. Somehow they make people feel powerless – even fellow doctors experience that when they become patients.
I’m sorry you cried, but thank you for sharing the kind words.
Kelly,
You are such a brave and strong woman — not to mention an incredible voice for RA. I know when I talk about my disease, I get chocked up, but you did such a phenomenal job of remaining calm, compassionate, clear, informative, and direct in the need for more awareness. I can’t tell you how MUCH I’ve learned from your blog and facebook page.
Those who struggle every day like you are so lucky to have you as an advocate.
Hanna
Kelly,
I agree with the other comments. You did a GREAT job representing us and telling the story of the patient experience. I hope you have the comfort of knowing the tremendous
impact you are having on people with RA, the medical community, legislators, regulators, and the public. I am so very thankful you and rawarrior exist in my lifetime or I have no idea how I would face this disease. Well done !!!
You did a wonderful job, Kelly. We are so grateful for your tireless and generous efforts on our parts. There are no words to express my gratitude, please know the tremendous effect you have had on the ra community.
Kelly, this was wonderful and very informative. You did an amazing job and we “Warriors”, couldn’t ask for a better voice. Thank you!
that’s very kind, Rachel. I got so tense it didn’t seem like me when I watched it. All I can do is my best & it helps to know you think I did ok anyway.
For me, becoming an engaged patient was less a conscious decision on my part and more a part of the person I was raised to be. When I was dx’d w/JRA in 1984 at the age of 7, my Mom was dealing w/her own health problems in the form of polymyositis, Reynaud’s, OA, GERD, etc. At one point, I recall hearing one dr describe polymyositis by saying what amounted to, “What RA is to the joints, polymyositis is to the muscles.” I think he was discussing how both are autoimmune diseases, how similar they are, etc.
After my dx, Mom refused to allow my dr to hide things from me, although he, like most drs, did NOT address the cardiovascular problems or life-span issues. My mom felt was that it was my body, I was the one who was going to live in my body, not her, and so I deserved to know all that I wanted to know. I was free to say when I’d heard enough or felt worried, scared, etc. She wanted me to be part of discussions about my symptoms, hear lab and x-ray results, and be part of the decision-making process. My doctor must have agreed with her because I remember hearing lab reports discussed and seeing x-rays. It got to a point where he almost made a game of “spot the joint damage” on the x-ray.
We also had a bit of a routine that began when some of the student doctors were unable to answer an extremely easy question and I easily blurted out the answer to it and other questions. The students had looks of shock, curiosity, and even puzzlement on their faces. They wondered how a 10 year old was able to answer my dr as quickly as I could. But, they did not realize how much my doctor encouraged me to learn, not in an in my face way, but in a way that just gave me the same feeling say a report card with all A’s would give a kid who likes doing well in school. And to be honest, even the 10 yr old me could see it was funny to see the shock on the faces of the med students.
In all seriousness, my mom and doctor took the approach that it was my body, I’d be living with the ways JRA affected me for life, so I’d better know about it. I was a reader, from the early age of 3 and up. I spent many hours in the library reference dept while Mom was in their computer room. One day when I was somewhere between 7 and 12, I’d grabbed a nursing textbook and was looking up something my rheumy told me (the fact my problems w/me often losing my voice are related to my JRA, which I have since confirmed & know now that is called cricoarytenoid RA) but I got distracted when I read about how autoimmune (AI) diseases such as RA, JRA, and Polymyositis, and other AI types of arthritis could shorten a patient’s lifespan by an average of 10 yrs. Of course, now that number is less because we know so much more about these diseases, although I’ve read it’s shorter by anywhere from 2-10 yrs, so there doesn’t seem to be a solid consensus. I recall reading that the cardiovascular connection was briefly mentioned, but at the printing of the text, they did not know what we know nearly 20 years later. I was a bit shocked. I don’t remember whether I said anything to my Mom or not, but I think I asked my rheumy about it. I’ve long forgotten his reply, if I did mention it. What does stick with me is that I do remember asking my mom if she knew that because, I seem to remember thinking if polymyositis was as the one dr described it, then she was also at risk. I don’t think she seemed too worried, although I do know that she was already at risk for cardiovascular issues because of family history, which puts me at risk as well.
As I got into my teens, I went into remission according to the ped RD who replaced the ped RD who dx’d me. I’d been told it was very possible. And because my first ped RD wanted me to know the worst case scenario and warned me that JRA could leave me on meds the rest of my life, unable to work, marry, or have and care for children, and then the last possibility was that by the time I was 16, I’d be unlikely to walk again and would rely on a wheelchair. Despite this, I made the decision to stop meds when I was 12 or 13.To be clear though, it is NOT as if I were on anything stronger than an NSAID at anytime. When I was first dx’d, I was put on what was then a study drug for children.We later found out that the drug I was on was ibuprofen, I later tried a second study drug, naproxen that time.That made me so very ill. I could NOT stand the nausea and vomiting. I also had an odd reaction where, when I took any NSAID long-term, I’d end up not being myself. I was more tired, grumpier, and just not myself. I was nearly 14 to 15 when this became a big problem for me.I was alienating all but my closest friends and in general, just very unhappy. My Mom listened to my complaints, and while she did not like that I wanted to stop my meds, she had also raised me to think for myself and not to make snap decisions. She felt I was mature for my age (a chronic illness does have a way of maturing a kid a bit faster than many other kids their age) and supported me in my decision to stop my meds, but said if I worsened, then I would have to start taking them again. Since I was only on an NSAID, it was not a problem. Had I been on a DMARD, I may not have been so quick to make the decision to stop meds. But because my JRA was determined to be “mild” and not moderate or serious and at that time, they were not as quick to treat a young child with the stronger medications.
It was not until I was 25 after the birth of my son when I went into a massive flare that I was finally put on a DMARD. When I was around 14 or so and the dr said I was in remission, they stopped mentioning meds. When I saw an adult rheumy, he was somewhat useless to me. He acted almost as if he didn’t think I had pain or disabling issues from the years of damage I had from not being treated. I do NOT blame my ped RD for my lack of aggressive treatment. At the time, it was believed that I had only mild JRA. So in light of that and how strong the medications were considered, it’s no wonder they were not willing to put me on a DMARD. They did what they could with the knowledge they had at the time. It’s just the cards I was dealt and I play the best I can with these cards.
I was in high school when I found an online email support group. I learned a bit about how to find quality information from reputable sources. I was taken under the wing of a woman who did a lot of advocacy. She taught me a lot and ended up asking me to work with her in the group as a moderator, helping approve posts from new members etc. Eventually, I started working with her on a newsletter focused on autoimmune and chronic diseases.
I also began working on other pieces like the one I wrote titled “What RA is Like: A Letter for Family & Friends”. I’ve had people tell me it is a great picture of life with RA and others who have said it is way too dark and rude, almost too in your face. I was also told that I must be a miserable person to write so negative a piece. But in reality, I’m relatively happy. I have an excellent support circle. My husband, son and roommate are all very understanding of my limits. My Mom understands as well because in addition to the polymyositis, OA, GERD, and Reynaud’s, she has also been diagnosed as having RA as well. My bestest friend has RA, in fact, when she really started having trouble, I kept telling her that what she complained of sounded too familiar to me. She was originally told that because her labs were not positive for Rheumatoid Factor, she did not have RA. I got mad then. I told her that was crap and any doc telling her that was either flat-out lying to her or they knew nothing about RA. I kept on her because she continued to hurt, have swelling, and just showed signs of things not being right. It turned out I was unfortunately right. It was one time I wished I had been wrong. Later, she was diagnosed with scleroderma as well. Her dx of RA was about 15 years ago and because she has never really had aggressive treatment, she has already had 4 major joint surgeries: MCP and DIP joints (I think) bilaterally as well as having bilateral wrist fusions and thumb work. They did her right hand one year and the next year did the left hand. The third year, she had surgery on her right foot to straighten out her toes and give her less pain. The fourth year, she had her left foot done. I spent the past week with her and saw how much of a difference her foot surgeries have made for her. I wrote my piece titled “What RA is Like” from the viewpoint of those who do not have the friendships and support network that I have. I took the things people commented on that they wished others would understand and wrote about them.
My forced time off while I was in the hospital and nursing home kept me from being much of an engaged patient during the time I was out of it. But once I was more myself, I was involved in my care and making the decisions needed to do what had to be done. I ended up getting involved with the resident council at the nursing home where the residents met to discuss any issues that affected residents and their lives. I learned that the rights of residents are taken seriously and most of the staff do their best to make sure that those rights are enforced even when no one would know they weren’t properly enforced. Since I got home, I’ve not been as active as I used to be but, I am also dealing with a lot of adjustments and my life gets in the way at times…as does the fact my attention span has suffered a bit since the long sleep, or coma-like state or whatever it was. But I do still encourage others I know to be engaged in their healthcare and to know all they can about their diagnosis.