Life with chronic pain is being a stranger in a strange land whether you have the pain, live with someone who experiences chronic pain, or treat people with chronic pain. You all have much in common and little in common. The more we can speak the same language, use the same descriptors, and shortcuts, and understand each other’s dreams and pressures, the better we function as a team. Penney Cowan’s American Chronic Pain Association is for the whole team.
Chronic pain, medical choices, tech, & health equity converge in a free-wheeling conversation with the Patient-Family Advisor Network chronic pain task force.
As a person who owns my journey, my learning journey, in this case, I explore the options, the resources that are available to me. Then I direct myself to make the right choices and learn what I need to learn. At the same time, it’s learning by doing. That’s a very important part because we can learn a lot of things in theory. But can I communicate that knowledge? Does it bring us benefit? It doesn’t help us with our life unless we put this knowledge to work. So, I believe in learning by doing and learning and exploration. So, again, we learn from other people. We learn by doing our work and continuing to explore options so we can improve what we know, and the work we do.
Walking through the who, what, where, and why of clinical decisions and Clinical Decision Support? Why we should care and what can we do? I’m also going to talk about uncertainty, the three T’s (Time, Trust and Talk) and the two C’s (Control and Connection).
This episode concludes the conversations with Fatima Muhammed-Ighile, a mother with two young children, and her mother, Esosa, navigating Sickle Cell Disease. These conversations have been different as Fatima and I are friends. We are familiar with each other’s families. We have shared some of life’s milestones. In this episode, Fatima finds that she’s turning into her mother and describes her experiences as a young mother of color seeking pain relief from a sickle cell crisis as the opiate crisis heats up. Hang on.
Welcome to this tenth episode in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.
Hey there, glad you could join me. I’d like to pause and take stock of the past six months and look a bit to the future. We’re in the middle of a series with Young Adults with Complex Conditions Transitioning from Pediatric to Adult Medical Care. I’ve published 7 episodes in this series. I’m taking a brief break on the series and traveling to Spain. While we’re here together I’ll look back at the series, talk about Spain, and reflect on my patient/caregiver activism journey. Read More
It’s everywhere, it’s everywhere. I can’t help but see almost everything I do in my advocacy through the lens of health equity. Whether it’s making decisions about our health and medical care, managing pain, young adults with complex medical issues transitioning from pediatric to adult medicine, men in caregiving, data sharing, patient access to data. Everywhere. I’m defining equity as people having the same opportunity to achieve best physical, mental and spiritual health no matter their social circumstances, biology, genetics, or physical environment. I wanted to take a look at bias, inclusion and equity from outside healthcare. So, I interviewed Ame Sanders and we talked about our own biases, inclusion or lack thereof in our communities, measuring bias, and taking action to reduce inequities.
Ame Sanders and I met at Seth Godin’s Podcasting Fellowship, 350 or so people from around the world learning to be podcasters. Ame caught my eye with her podcast, Equity Warriors, and her company www.stateofinclusion.com. See the show notes for further information. We decided to interview each other. You can hear Ame’s interview of me at the link above. Being a practical person, I look for what works and what we can learn from other people’s experiences. While Ame doesn’t work in the health care space, she has much to teach us about the state of inclusion in communities. Read More