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 at 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.
Recommended reading
- Mission Impossible: Crowd Management with RA
- Behind the Scenes Video: Patient at a Social Media Conference
- Hey Superman! Does Accepting Limitations Make Us Weaker?
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