I’m not following March Madness this year for the first time since we bought a TV in 1985. We ended cable this year (that’s another health story for later). Rather, I followed the suspense of the failed enactment of RyanCare and TrumpCare. I silently cheered at my seat in DC while reviewing PCORI Palliative Care funding requests. My elation lasted all of five seconds. I can’t ignore that Ryan, Trump et al still want to end funding for Meals on Wheels, housing subsidies, and home energy supports. We know that even with the best-subsidized insurance, a person who can’t get enough food to eat nor heat their home, nor afford a home can’t benefit from great medical care. These social determinants of health (or living life if you’re not a researcher or policy maker) impact health as much as, if not more than, medical care. Read More
I’m preparing to attend a California Compassionate Care Coalition palliative care conference #cccc17 in a week. I’m reminded of the power of community in advancing good health practices. I have two stories. The first is about the ongoing public health collaboration since 1993 in LaCrosse, WI to meet and sustain very high rates of advanced care planning and following documented preferences through end of life. A group of people organized a region-wide initiative to elicit, understand, document, and honor a patient’s preferences about future medical care. As a result end of life preferences are a regular part of community conversation, documents became easier to understand and use, some electronic medical records facilitated access to choices, and following the choices became standard practice. In 2010 90% has a plan, 99% were available in the medical record, and 99.5% of the time treatment was consistent with preferences. (See the Journal of American Geriatrics Society). Amazing! Read More
From my memorable quotes pile:
Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?
Recently diagnosed patient: I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office. Now I’m home, how do I get my questions answered? Read More
As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals. What do I mean? OK, people who are well want to stay well. Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. Read More
I suffered through the inauguration. Michelle Obama looked heartbroken. I’m heartbroken.
Rather than feel hopeless or angry or terrified, I’m appreciating every act of patriotism I see each day. Patriotism is making your country stronger, making your community stronger. What makes our communities stronger? Clean air and water, public safety, accessible and affordable healthcare, educated people, welcoming, diverse neighborhoods. Questioning, searching, learning. I appreciate the patriotism of those serving our neighbors and communities in small and large ways. Sometimes it’s through caregiving, working for child health and wellness, welcoming new neighbors, teaching, keeping us safe, supporting a healthy environment. Moving the dial an inch toward better for each other. Whatever, wherever. I urge you to name this everyday patriotism and say thanks when you name it.
So, thanks, dear readers for all you do. I appreciate your patriotism.
I’m looking for leaders who can and will guide us through these troubling times Who can we look up to? Who will we follow? Michelle could, but does she want to?
I spoke with a friend this week who felt like a stranger in a strange land. She’s recently moved to a community with almost no experience with Muslims, people from West Africa, or with those with chronic pain from a genetic disease. Every encounter presents challenges drawing on her charisma, empathy, dignity and ability to adapt and educate – sometimes during the crisis of severe pain. During my friend’s medical encounters she does not face a health literacy dilemma. She is usually more expert about her culture and her health challenges than the medical professionals she meets. She faces a life literacy dilemma. In my life as a patient and career as a clinician, I face an infinite variety of people, cultures, and situations different from my own or my comfort. I am often at a loss at how to engage this range of clinicians (as a patient) and people (as a clinician). How can we proactively prepare for so much unknown and unfamiliar? Read More
I’m scared but not shocked. The level of disappointment so many people feel about their lives profoundly saddens me. I should have more. I would have more if it weren’t for others – all sorts of others. Feelings of injustice can power so much. I don’t pretend to understand all the righteousness, anger, and meanness that erupt when disappointment builds. But it feels as familiar as the human condition throughout the planet and over the ages. It’s like earthquakes from fracking. I’m thankful that my mother, a Holocaust survivor, is no longer alive. She would be apoplectic and inconsolable. What’s going to happen now? How should I act? As when grieving, I will mindfully minimize controllable stress – exercise, rest, listen to and play more music, spend more time with friends and family. I will continue to give thanks for all I have in my first world life. I will continue to pursue my passion for maximizing the experience of people at the center of care. I pray for the physical and spiritual strength to speak up, stand up, and act when the moments seems right. I’ll need strength to take the high road in this low road time. More than anything I’ll pray for unexpected open hearts. The community needs it. Our grandchildren need it. The unborn need it. Onward.
So just a quick post:
Last week I was invited to the @MITRE Corporation by @HarrySleeper and met teams working on:
- Standard Health Record, an open source single health record, if it happens to the person, it’s in the SHR. Secure, informed-consent access to our health data across multiple platforms with advanced security and privacy protocols. Accessibility for us and authorized family , care partners, and healthcare providers to our health-record 24/7, anywhere in the world. Empower people with an enduring voice by allowing us to add, verify, and easily share our data with trusted third parties
- Intervention Engine, assigns risk rating and prioritizes patients for clinician team members in clinics and offices to huddle and review patient status and proposed interventions
- SyntheticMass, a test database of Massachusetts residents health records simulate population health. Expecting to have all 7 million loaded in 2021
- Bonnie, a tool for pretesting clinical quality measures
- Social Determinants of Health, a great graphic for a holistic picture of health
Thanks to @JuhanSonin for the intro. Amazing work going on. Need to spread the word. Till next week.
I’m a technology nerd and early adopter while also a profound technology skeptic. My heart sings when communities of people solve problems that matter to them and theirs and then look for technology partners to automate and share their solutions. By community, I mean partnerships of people at the center of care (people, care partners, clinicians) and neighborhoods, counties and states.
Recently, I spent a few days with big data, technology, entrepreneurs, and healthcare under the big top of Health 2.0 in Palo Alto. CA – a relatively low-key festival of mostly entrepreneurs trying to sell big data and apps with the edge of worry about engaging patients in their data and products. I felt at home with my advocacy and community browsing new ideas and new uses for technology Read More
I was discharged after bypass surgery with 26 pages of instructions. I was just concerned about getting home.
My dad lives alone on the other coast. He takes 11 medications from 4 different providers. At least one gives him a blood thinner. What do I do if he bleeds?
I can get my acupuncturist and massage therapist to talk to each other, but not my doctor. They’re all helping me with my neuropathy pain.
My doctor tells me that if I get this surgery I’ll have a 10% chance of living longer and 1% chance of serious complications. What does that mean for me?
The doctor told my mom that she can’t drive anymore. How will she get her groceries, her meds, to her doctor appointments?
Who will feed my cat if I have to go to the hospital?
I live 4 miles up a dirt road. Will I be able to stay in my house?
It’s complicated to manage health and wellness. Planning and living care is daunting. The journey occurs inside and outside of the medical space. Sometimes we travel alone and sometimes with our care partners and health team. Always within our communities. The journey is our life – one foot in front of the other, with expected and unexpected, desired and undesired forks in the road. We can wing it or look for a map. We have evidence of what works – sort of and sometimes. The evidence is about specific routes for groups of people. You and I may be on an unusual route. You and I are not groups of people, we are one person in many groups. Once a person decides or needs to feel better, a roadmap helps. A roadmap plus stopping periodically to check if you’re still heading to your destination. Read More