The Powerful Health Care Role No One Really Wants: Being a Patient
The valuable knowledge of patients with diseases like RA
Today, Katie Beth and I flew home from San Francisco where I spoke three times this week: There was a presentation about the value of patient input with chronic conditions like rheumatoid disease, a panel discussion about e-patients and e-docs at Digital Pharma West, and an informal address about RA to the leadership and staff of Crescendo Bioscience.
In front of a few friends and lots of total strangers, I shared experiences about RA and explained specific ways that direct patient input could improve every aspect of health care, from research to diagnosis to treatment delivery. Patients have such a rich bank of knowledge by the sheer fact that they live with conditions 24/7/365 without a day off.
Being a person living with a chronic disease is the last thing I expected in my life. This week, I attempted to help others know what that’s like. I busted some myths about RA and helped the audience to see that anyone could become a patient themselves at any time, especially with diseases like RA where there is not anything people can do to prevent being affected. The message was very well received. We spread plenty of RA awareness and built a lot of goodwill for our community.
No one wants to be a patient
About a week before the conference, I saw a Tweet saying patients want to be “health care consumers” as opposed to “patients” and I responded (see image below) that I didn’t necessarily agree. What patients want is to be healthy. No one wants to be a patient or to consume health care services / products. I suspect that’s unanimous in the RA Warrior community: none of us want to have Rheumatoid disease, to use the most expensive class of drugs in the world, or to need health care attention.
AND, being sick, we would rather not call attention to it either. It will probably be criticized, but I wish I did not need to advocate for better tests, treatments, and improved care. AND, while I’m privileged to speak for other patients, I would like to have a day off from being sick once in a while. Even felons get time off for good behavior – but patients with a chronic disease do not.
The incoming tide of a patient-centered future
There are naysayers who say patients don’t have any business having input in health care standards, policy, research, or marketing. The reality that is obvious from Wednesday’s panel with Dr. Mike Sevilla, e-patient Sean Ahrens, and me, moderated by Bob Brooks of WEGO Health was that changes are already happening even while some say they are too thorny to pursue.
Patient input will continue to increase like a tide that’s coming in. The obvious fact is that patients have the most at stake and in many cases have the broadest base of knowledge about health conditions. Patients will continue to claim more significant seats at the table.
Note: Thanks to What’s Your Digital iQ who has already published a review of my Digital Pharma West presentation “Gaining Insights from the Patient Experience” which paraphrases some of the topics in the talk about increasing the influence of patients.
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17 thoughts on “The Powerful Health Care Role No One Really Wants: Being a Patient”
Kelly — Thanks so much for visiting with us at Crescendo Bioscience. I’ve had numerous people express their thanks for having you visit and share your thoughts with everyone. It is important for us to hear from patients, both to understand their needs and to be re-energized in our mission to do everything we can to improve the lives for patients living with rheumatoid disease. — Alex
Thank you for being an advocate. I know that sometimes just getting through a “normal” day is hard enough without the stress and physical taxation of travel, public speaking, and all the preparation for and recovery from the same. Thank you.
Thank you, Dianne. It means a lot to know I’m not alone.
Can’t really complain since it might sound like whining, but it’s much harder than I can explain. Horror stories of a 30 minute trip to the bathroom at the back of the plane etc.
Hard to believe that these people still feel the need to discuss whether patient input is beneficial. I’ve long felt like patients are just the fodder that keep the healthcare machine churning.
I have no desire to be a “healthcare consumer.” I’d be happiest if the next doctor I saw was the one who signed my death certificate, the day after my 105th birthday. With the hand I’ve been dealt that’s not possible.
Please don’t tell me that the drug I’m on only causes nausea, so the heartburn I get from it isn’t real. My money, and the money of every other patient, pays your salary, whether you are an M.D., the person in the denials department at the insurance company, or a sales rep for the pharmaceutical industry. If you don’t value our input, who do you think you are working to benefit?
Anne, you sound like me – I always say I want to become like an elephant – very wrinkled & gray. And then one day get hit by a bus. It means I won. RA did not kill me.
And, yes, I know there can be some severe side effects that are just denied or ignored. Who does that help? Patients just end up giving up on meds…
You are doing a great job. It can be really tough sometimes, as all of us know.
Kelly, feel free to complain!! We all have to have someone to tell our stories to, and most of us don’t want to overburden our friends and families with all our tales of woe. I would be happy to listen to your stories and misadventures, and I promise you that no matter how big or small, I won’t look at it as whining, but just as healthy ventilation.
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Thanks for doing this work! I know it must have taken weeks of prep and you will have weeks of recovery. But I’ve learned that sometimes what is accomplished in a few hours can be more important than what I do for the rest of the month. I went on a trip with my family 2 weeks ago…it was priceless but I’m going to spend the next 4-8 weeks recuperating.
This is exactly right. Understood like only a fellow patient can!! Thank you for helping me feel understood!
Not too long ago, I told a lady from the insurance, that I had chosen to take a certain medicine because of the toxic effects on the liver over another preferred(by ins.) medicine. Her reply to me was, “You dont just tell someone what you take. Like, you dont just go to the doctor and tell them whats wrong with you. You tell them how you feel, and they will tell you whats wrong.”. I dont know what universe she lived in, but obviously not the same as mine. In RA, the patient must be a part of the process. Ive never met a doctor or Rheumatologist who knows even half what I do about RA or a third of whats on your blog. I know Im not exactly on target, but with this disease and its dicoveries moving so fast, it truly takes a team of people working in order to crawl the ladder of progress.
Also, a few months back, I noticed you used a pic of my hand(s) in an email. Wow! That pic was before I got the disease under control. I was going to mostly regular doctors and getting shots and pain pills bi monthly. The shots of prednisone and Decadron would cause a yo yo effect with nightmarish pain and swelling. Id almost forgotten the individual episodes and probably lost a hundred pictures. Thanks for reminding me, it makes me even more determined.
thanks for this Wesley. Great insights. And reality that needs to be known before it can be changed. I’m so glad you’re finding control of your disease now. Just spoke with a man on Twitter who seems pretty hopeless (no treatment working yet & can only see the dr once per year in his country). We tell them to hope that relief will happen for them too so it’s very helpful to have posts like yours here that show it’s possible!
I have the knowledge and documentation of my own self, of the way my body reacted the last time something happened, to the point I can eat right, take medicine, and do just enough to keep in the best shape someone in my condition could have. I have more control than I used to. There are many reasons; diet, the right medications for me, (exercise as to say of such), and keeping a positive attitude. But you got to have a plan. If not, you can find yourself in trouble. I just got bitten by a tick and had erlichiosis. Thats the second time. I was taking Plaquenil. Apparently the anti pathogenic effect causes succeptibility. I was very sick. Both times in two years. I had to take heavy antibiotic doxycycline hydrochloride. It seemed to help with the rheumatoid. I want to look and see if its similar to the antibiotic in sulfasalizine. Ive heard antibiotic therapy works for a while. Im only 38. Have been in a wheelchair, but able to stand most the day now.
Excellent presentation, as always! I just have one thing to say, which is that, though we don’t -want- to be health care consumers, we are, and we have to behave as consumers, by choosing health care providers based on the quality of their care, rather than on the fact that they just happened to have graduated with a medical degree. Yes, I want to be healthy, but the fact of the matter is that I am a consumer, and the power of the consumer in this economy is pretty strong, if we push it.
I do get so angry about people who talk about “anecdotal evidence” being, well, anecdotal, rather than scientific, but I’ve always argued that anecdotal IS scientific, as observed from our very scientifically described 5 senses. I am super glad that you are on our side and out there doing what you do. So many times I see you and ache, because I see your pain, and feel it, but you just keep going like a steam train. You rock. 🙂
As a sufferer from another condition, I know that I am the specialist through experience and I feel very angry if someone decides on my care without consulting with me. I hate to be a consumer of the health care industry, but unfortunately I am always looking for something that can give me a better quality of life and that makes me the consumer that I do not wish to be. I wish I could put all my medications in the bin and just enjoy life like I see others do and save some money as well!
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