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Advocates | Danny van Leeuwen Health Hats - Part 2

Bad experience? Now what?

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

I read a post this week on the Society of Participatory Medicine’s blog about a nightmare attempt to obtain medical appointments as new patients. You’ve faced the poor listening skills, conflicting information about the availability of appointments, lack of sharing information about you within the clinic or insurance company, poor or no follow-up, waiting, waiting, waiting, that the author describes.

I’ve dealt with it, too, as a patient, caregiver, clinician, and quality management leader. So, how do health care clinics and insurance companies know about the challenges their patients/customers live through? The most common is through surveys. Surveys are blunt (not sharp) and fairly useless. Most health plans require clinics to administer the CGAHPS Clinician and Group Survey. Three questions on the survey include:

  1. Patient got appointment for urgent care as soon as needed
  2. Patient got appointment for non-urgent care as soon as needed
  3. Patient got answer to medical question the same day he/she contacted provider’s office

You can answer Never, Sometimes, Usually, Always.

Most health plans survey patients about health plan service:

  1. In the last 12 months, when you needed care right away, how often did you get care as soon as you needed?
  2. In the last 12 months, how often did you get an appointment for a check-up or routine care at a doctor’s office or clinic as soon as you needed?
  3. In the last 12 months, how often was it easy to get the care, tests, or treatment you needed?

See, not very informative. A score might be more than 80% of patients say Usually or Always? That could mean that 19 of 100 people responding are unhappy with their experience. Wow. How can anything be changed based on that result? Read More

Taking a Risk

By | Advocate, Caregiver, ePatient, Musician | No Comments

OMG, I’m upgrading my website. I started the blog almost 5 years ago setting up the website with help from my friends Eric and Jodi (this is my 305th post). Now I want more from the website. I’m adding two pages: Portfolio to share my articles, guest posts, interviews, and projects. How Can I Help You? For topics we care about and related resources. I’m determined to create it myself – much like my wife and I built a house – seriously ignorant, reading instructions, tutoring, advice, and making significant mistakes while putting one foot in front of the other persistently. Learning something completely new is a frustrating gas. Frustrating until you learn a bare minimum of the language, get the right tools, building a support team, and finding the growing mindset of I can do this!? Frustrating when you mess up big time – like a couple of days ago when I unknowingly loaded 13 sample posts with my new theme and they went out to all of you looking like spam. (Thanks for letting me know and hanging in there with me.) A gas when you stumble upon or are pointed toward a solution, when you can find the solution a second time, when you can start to see the creation, and when someone else appreciates it. Gosh, this sounds like living or supporting someone with a chronic illness, living in another country or community, playing music, going to school, or starting a new job. Read More

Cinderblocks4 – Medical Advocacy at its Best

By | Advocate, Caregiver, ePatient, Informaticist, Leader, Musician, Researcher | No Comments

 

Pound for pound, the best health conference! A rare combination of small, local, action-oriented, inspiring networking, and relaxing. 40-50 attendees met in Grantsville, Garrett County, MD, population 766, for three days. Regina Holliday of Walking Gallery fame organizes and breathes life into Cinderblocks. The older I get, the more I seek people who collaborate to solve local problems that matter to them.   50% of the 30 presentations were literally local – from Garrett County and immediate vicinity. The rest came from as far as France and LA, Oklahoma, Texas, Boston, and DC to learn what works for each other. A sample: Read More

Calling All Advocates – Health Hats Interview

By | Advocate, ePatient, Leader | No Comments

You know I love stories, telling and listening. Especially stories of people on a rough health road who take the fork to advocacy and community organizing. Advocacy and community organizing isn’t for the faint-hearted. It’s a tough business. Passion and lived experience are necessary, but not sufficient. Advocacy is a struggle. We need lessons learned from advocacy experts. Read More

Resist, Fund Me, Change, Join, Decide, Click, Lead

By | Advocate, ePatient, Informaticist, Leader, Researcher | 3 Comments

 

The pervasive drumbeat of Calls for Action in healthcare overwhelms me, excite me, bewilder me. I’m wired for action. I have to listen and consider or shut it out. I have no middle ground. There’s a limited amount of gas in my tank. I feel protective of my retirement dollars. And I still need to take out the garbage and do the laundry. Do I want to respond? Am I able to respond? What am I really responding to? How much is enough? Does it align with my mission? Will it be fun? Read More

March Madness – TrumpCare

By | Advocate, Consumer, Family man, Leader | 2 Comments

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

Coalition for Compassionate Care of California

By | Advocate, Caregiver, Clinician, ePatient, Leader, Researcher | One Comment


I attended the Coalition for Compassionate Care of California Conference (#CCCC17) in Sacramento this week as an ePatient Scholar. Exhilarating, informative, warm, curious, inspiring, and tiring. I hoped to leave with one novel (for me) insight into palliative care; hear patient, caregiver, and clinician stories about their experiences; to hear how clinicians receive education about end-of-life conversations; to add to my network of patient/caregiver experts; and leave with a sharper focus for my #careplanning work. Amazing! I accomplished all five. I hoped to accomplish three of five (I habitually set myself up to exceed expectations). Read More

Need a recharge? Listen for what works.

By | Advocate, Caregiver, ePatient, Family man | 2 Comments

 

I feel awash with stories (nightmares even) of disastrous, frustrating relationships between people and their professional care teams. I listen with amazement and watch the hurt, the anger, the self-blame, bubble out, spew forth. Sometimes I have to sit sideways to protect my heart from breaking. At their best, relationships are partnerships. Partnerships can be a bitch in the best of circumstances. Yet, good partnerships make me high – the partnerships with my honey, my work teams, in music groups, with the anonymous one-time chance encounter and yes, with my health teams. Read More

Michelle, We Miss You Already

By | Advocate, Caregiver, Consumer, Family man, Leader | 3 Comments

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?