Patients: If You’re Not First You’re Last

If I had to pick a constant in my life, something I hear and work towards continuously, and something that has been under the microscope for the past week and for the next three days, what would it be? That’s easy: patient first.
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Patients. ePatients. Patient advocate. Patient engagement. Patient advocacy. Patient care. Patient experience. Patient first.
I have such an interesting perspective on this concept. It’s a blessing, it’s a curse. I understand the side of the patient because I live it every day. I understand the side of the provider/health system because I live it every day. So how do we marry the two? Because right now, they’re in a relationship and it’s complicated.
Both ends of the spectrum and all points in between preach patient first, patient first continuously. What I’ve learned is that we’re falling short. That’s not to say that health systems, physicians, businesses, healthcare professionals, and patients aren’t trying. However, we have a long way to go. So what’s the answer?
I’m going to borrow a few questions from Stanford Medicine X to make us ponder.
  • How might we… meaningfully include everyone in health care?
  • How might we… imagine what the physician of the future will look like?
  • How might we… define our vision for participatory medicine?
  • How might we… give back to others in our work?
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As an ePatient and someone who fights multiple chronic diseases, I not only want health care to change, to continue to move forward, to continue to make changes, but I need it to do so. Chronic patients are those that feel the pitfalls and the successes of healthcare the hardest. I am blessed and grateful to have very good medical insurance coverage and an understanding and flexible employer. But that isn’t the end. Having those things are invaluable for chronic disease patients, but we need to focus on more. How might we develop the experience of the healthcare system? How might we utilize patients and their knowledge and expertise? And why aren’t we doing that yet?
I don’t have all of the answers for this, but what I do know is that it’s what I want to dedicate my energy and my passions and my knowledge to figure out. Attending conferences like Stanford Medicine X and Mayo Clinic Center for Innovation Transform 2015 open my eyes to so many different people and ideas enveloping this very goal.
I am so motivated by these individuals. How do I bring this back to Michigan? More importantly, how do I begin to live this way every day?
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It’s unfortunate that I am someone who suffers from multiple chronic diseases. But there’s nothing I can do about that. What I can do is work hard for the cause. What I can do is give even just one person the feeling of support. I pledge my life to that, no matter how bad my diseases get, no matter how many unanswered questions and symptoms I have, no matter how sick I feel every day, no matter how much pain I’m in: I know I can continue to do that. It’s not a choice, there’s no hesitation. We have to change healthcare for patients and caregivers.
What do you think? Tell me about what your health care is doing right, and doing wrong.
Chronically Kristin

3 Comments on “Patients: If You’re Not First You’re Last

  1. My healthcare is awful right now, absolutely horrendous to the point of being criminally negligent and abusive! It’s a long story but interesting if you’d like to take a look at my blog. The whole story is there;

    • I am so sorry to hear that you are struggling! I know how that place feels and it’s not easy. Sending you good thoughts and I hope you are at least able to get some relief soon! Looking forward to following your blog!

  2. Pingback: » Stanford Medicine X 2015 – The Impact #medx #medxhangover Lorena Macnaughtan

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