Not too long ago, Maya Said from Outcomes4Me.com approached me about speaking on a panel at the upcoming HLTH Conference in Las Vegas. The theme of the panel, at a conference that hasn’t historically been very open/welcoming to patient involvement/input, is “Will the pace of cancer innovation lead to poorer outcomes?” Maya, the founder of Outcomes4Me, recruited myself, Kimberly Richardson, and Dr. Shikha Jain to speak on this panel. She posted this announcement on LinkedIn:
We were only given 30 minutes to discuss a topic that should probably have hours and hours just to scratch the surface and I heard from my fellow panelists how tiring it is to continue to advocate for changes to a system that is often unwieldy. I am reminded of a blog post I wrote not too long ago, Patient Centric, where I pointed out how I’ve never really been treated by a system that is centered on me, the patient. While I do think that the Mayo Clinic, where I get some of my care now, has gotten a lot right, there is still so much that is harmful, even abusive to patients.
The sad fact of the matter is that our medical system has become (or maybe always was) focused on things other than health, other than the best interests of the patient. There are so many competing values and stressors on clinicians and health care workers that take their focus off of what they were trained to and likely want to do. Sure, there will always be bad actors and checks and balances are necessary to measure and achieve desired outcomes; at the same time, as a consumer of the health care system at least weekly, many times multiple times a week, I can confidently say that the system misses the mark regularly.
How can a system often focused on profitability truly meet the needs of the patient?
As the pace of research increases, will it be possible for the patient’s needs to be met?
What is patient empowerment and can it be measured?
So many questions and so little time to answer them! As we prepare for this panel, which is coming up on Monday, the 14th of November, I will be thinking and writing about these things. In the mean time, I want to hear from YOU — how would you answer these questions? What do you think that the health care system needs to know?
It may not feel like it to you, if you are not a patient with a serious or chronic illness, but our lives depend on these answers.
No Half Measures 
I feel like the healthcare system just doesn’t care about me as a person. For instance, my lymphedema gloves and sleeves are not covered. And I need to get permission to even see that therapist because I have already met with her their allotted 6 times. So if I have a question? That sucks.
And the entire scan issue is mind blowing. I can only have a total head to toe when they approve it. Meanwhile my tumor market numbers indicate that something is up…. and I can only have those once in a while!
Whose life is it anyway?
And medication costs … right now all mine are covered, but my MIL has one that could cost over $260,000 a year!!! Is she supposed to suffer or die because of this? It is so morally wrong.
Can’t wait to hear about your experience with this conference.
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Morals and the healthcare system are just not compatible, I’ve found. It’s scary and oh so sad.
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I am not a complainer, but how can we not about a broken system? We live in northern California, where specialists tend not to stay around because the pay is much greater in urban areas. Medical costs continue to rise at astronomical rates. Even as someone in the middle class, I wonder how families are supposed to manage financially. My mom has since passed, but she needed to see a cardiologist. She could not travel out of the area and had to wait close to a year (This is a person’s heart we’re dealing with here!)
Now I have another friend going through the same thing. He waited six months, and his appointment got canceled. A few weeks later, he ended up in the ER, and the doctor discovered his problems were related to his heart. He could very easily have lost his life while waiting.
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Such scary situations — I wish I knew the answer here; it’s just terrifying.
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Wow, Abigail, what an honor and responsibility! I wouldn’t know where to begin answering those questions, but their urgency is, I believe, evident to us all.
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Appreciate you reading and commenting!
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