Tag

community

Community Rocks

By | Advocate, Caregiver, Consumer, ePatient, Family man, Leader | No Comments

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

Once Again – Stranger in a Strange Land

By | Advocate, Consumer, ePatient | 2 Comments

doctor-cant-see-youI 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

Community/Technology Partnerships @ Health 2.0

By | Advocate, Caregiver, Consumer, ePatient, Informaticist | No Comments

ribboncutting-icI’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

Nowhere We Can’t Get to in an Hour

By | Advocate, Family man | One Comment

In our BvL WV30’s we lived in West Virginia – very rural, back-to-the-land hippies, eight miles up a dirt road. We participated in many communities. Our intentional community of families shared 180 acres of land, helped each other build our houses, raised our kids together, home schooled, with some facsimile of farming – garden, bees, fruit trees, chickens. Another community was the town emergency squad where I volunteered as a paramedic and my wife drove the ambulance. The community of young back-to-the-landers throughout the state was yet another community – playing music, partying, sharing skills, stories and resources. A different community was that of a state-wide network of people teaching Advanced Cardiac Life Support – meeting twice a year to train trainers and then traveling to teach at each other’s courses. Another, was the group of people lobbying for homeschooling in the state capital – conservative Christians alongside hippies. Although it’s the most rural I’ve ever lived, I grew up in Chicago and Detroit, I had the highest sense of community there in rural WV.

House WV Read More

Ripples in Health

By | Caregiver, Consumer, ePatient, Family man | No Comments
Drop a pebble in and watch the ripple. Mesmerizing. Several ripple experiences this week on health journeys. A colleague caring for parents as they slip toward dementia. Challenges for the parents, challenges for their children. A friend whose parent had a stroke canceled a scheduled meeting. Children sick – parents can’t make it to work.  Health is not just about me or the person identified as sick or disabled. Ill health affects my family and my community as much as me. Ripples upon ripples.
World-wide: person, family, community all affected by immobility. My wife and I attended a benefit for the Free Wheelchair Mission, a program we have supported for several years.  Approximately 100 million people in the world can’t walk and need wheelchairs. Many conditions can result in the inability to walk such as cerebral palsy, muscular dystrophy, polio, diabetes, amputations from war, violence, and disease. Most of the people needing wheelchairs can’t afford them and live in locations without paved roads.  Don Schoendorfer, an MIT trained mechanical engineer designed a wheelchair using easily found, easily maintained, and easily shipped materials. The wheelchairs cost $72. The Free Wheelchair Mission has shipped over 750,000 wheelchairs to 90+ countries. Getting a wheelchair changes the receiving person’s life dramatically as well as their family’s life, and their community. Again, an astonishing ripple. 
 
Honor the caregivers, help the helpers.