Category

Leader

Building Capacity. Building Power. Citizen Power.

By | Advocate, Caregiver, Consumer, ePatient, Leader, Podcasts | 3 Comments

Capacity for best health ebbs and flows. That’s life. Some call citizen capacity – “patient engagement.” But that’s too weak. Growing and sustaining citizen capacity is citizen power. Our personal and community health depends on it.
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Get along. Get it done. Governance

By | Advocate, Consumer, Leader | 3 Comments

If your team, organization, the project doesn’t seem worth your time or smells fishy, check governance. Change is tough without understanding who makes decisions and how. Activists, professional people, community folks – anyone who’s part of a team knows the difference between a well-run team, an effective meeting, and the duds. Read More

Special edition for blog subscribers only

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader, Musician, Researcher | One Comment

Health Hats, The Blog is changing. I’m the same 2-legged white man of privilege, living in a food oasis, who can afford many hats, as I was a couple of months ago. But my advocacy, ministry, channel are changing.  I fell into this podcasting fellowship and here I am a podcaster, too. I’m having a blast. Loving the sound medium. The blog has been a mouthpiece for me. I tested the limits of showing how full of myself I can be. And it allowed me to think out loud.

You are my loyal audience. I write and produce for you. I start with a germ that’s mine. A question, an idea, an initiative I want to think through. Then I go to it with you in mind.  I ask myself, why should you care about whatever? It’s important to me, why do I think it should be important to you? As I write or produce, the germ sprouts, grows into something unexpected, almost all the time.  I’m amazed.

The thing about blogging is that’s almost always one-way. I average 1.3 comments per blog post over 6+ years. I’m getting a bit tired of myself. There’s so much about which I know enough to be dangerous. Podcasting can be a two-way street. Me learning about what interests me. I also recognize that some people like to read, others like to listen, and still others like to watch. So, I’m trying to develop all three media: blog, podcast, YouTube videos.

I’m part of a podcasting fellowship: eight weeks of daily coursework with 300 other budding podcasters from all over the world. We created a supportive community during the course. Now that it’s over, over 100 of us are still engaging, sharing, cheerleading, learning together. A model virtual community (I smell another blog post). I’m a budding sound engineer, producer, and interviewer. I added transcripts for readers and deaf folk. Be still my beating heart. Already, I’ve had an ode to my boy, Mike Funk, met men in caregiving, channeled clowns in the doctors office, explored health equity. I’m working on a series about young adults transitioning from pediatric to adult medicine from the young adult and parent perspective, and conceiving a series about pain management.

But I never asked you if this change to blogging plus podcasting was OK with you, what you think of it, or for your constructive criticism. This is me asking you now.

  • How do you like this transition and change I’m making?
  • Do you listen to the podcast? Read the show notes?
  • Do you still find the blog posts, show notes, written stuff valuable?
  • What do you think about the topics, the guests, the music, the quality of sound, the noise?
  • How about the length? It’s ranged from 20 to 68 minutes.
  • I’m using my cousin’s Joey van Leeuwen’s music. Isn’t he great!?

I was going to send you a survey, but I’d rather just hear from you. I’m eager for observations, atta boys, I’m outta heres, creative ideas, topic ideas, interviewees?

Talk to me, please. Email me at danny@health-hats.com!

And thank you for your loyalty.  Weekly for six years, OMG! We’ve been together a long time in blog years. Onward!

 

Equity: more to achieve the same

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

Diversity, equality, and equity are not the same. Diversity = the inclusion of differences. Equality = leveling the playing field. Equity = People have the same opportunity to achieve best physical, mental, and spiritual health no matter their social circumstances, biology, genetics, or physical environment. Bias impacts them all. Reaching for equity requires moving toward systems designed and built for inclusion and best health outcomes. Read More

First, We Listen

By | Advocate, Clinician, ePatient, Leader | No Comments

As a blogger, I talk. Every week, I talk. I talk about what I experience, what I think, and what I think I know. As my web/social media coach says, “You’re a content machine.” Now that I’ve started podcasting, I realize that I know enough to be dangerous. Podcasting is an opportunity for me to listen and learn. Listening has always been a challenge for me. Read More

Pain Management Choices: One Person’s Point-of-View

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

Pain and choices mix, but not too well. A sudden new pain requires professional attention and a pill – I gotta get over this. With severe chronic pain, I pray for some choices that I know might work. I want choices to prevent the pain – a routine. When the pain breaks through I want at least four things I can try. First non-drug that I can do myself (like heat, cold, vibration, meditation), then non-drug help from others, (say, massage, chiropractic), then less side effect drugs (Tylenol, cannabis…).  Finally, pocket therapy – something I’d rather not take, but it’s good to have in my pocket, just in case. So, that’s me in particular circumstances.

Almost everyone with chronic illness experiences chronic pain. Chronic pain in the US costs more than $600 billion annually in health care costs and lost worker productivity. I attended and presented at the Agency for Healthcare Quality and Research (AHRQ)-supported Patient-Centered Clinical Decision Support (PCCDS) Learning Network annual meeting (phew, a mouthful!) focused on decision-making in pain management and reducing opioid use. My job was to keep it real.

Please find the audio and slide deck here on my YouTube channel. It’s 44 minutes long with the Q&A portion. Here you can find my web resource page with other pain management resources. It’s a work in progress and will grow over time. Feel free to use any or all of it. I operate under Creative Commons. That means: please give me credit (attribution by Danny van Leeuwen/Health Hats). You can stop reading here or read a brief summary of the talk below. Read More

Power, Fear, Lack of Empathy

By | Advocate, Family man, Leader | 6 Comments

Photo of Ruth and Ruben van Leeuwen circa 1947

I was riding my trike this morning at 6:30. It was beautiful, dry, cool, few people out. My pathological optimism has escaped me.  I needed serenity following my recent MS infusion. I was hoping that I’d find clarity for the post I started yesterday about health data, health research, learning, and adjusting. I’m underwhelmed by our collective ability to learn and change based on experience and evidence. Where do I go with this germ of a post?

But no, I’m getting more and more agitated with every pedal. First, immigration and refugees. Then Brett Kavanaugh’s Supreme Court nomination. I can’t shake it. No serenity, no nifty pearl for my post. Just escalating sickened outrage about power, fear, lack of empathy and its effect on our community well-being. Deep breaths, mindful meditation have no effect.

My parents, both Holocaust survivors, were not religious. But I heard Love thy neighbor as thyself often and I watched them live it.  My mom, when she finally began to speak about her experiences in hiding, emphasized her gratitude to the people who hid her at great risk to themselves. She would say, I wasn’t brave, they were.  I just survived. They were the heroes. The Trump administration is determined to wipe out immigration – both legal and illegal. It makes no sense to me. It flies in the face of decency, empathy, common sense, and evidence. Since this is a healthcare blog dedicated to empowering people as they travel toward best health, I’ll stick to that lens. Most people want to live the best life possible with their families, contributing something to their communities. This I believe. If they can’t be safe in the home, they want to move if they are able. If they can’t be safe in their countries, they want to emigrate. Even in the face of great risk. We in the US are fortunate.

Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!

So we do the work to assimilate! Is that so hard? It’s moral, ethical, empathetic, right. Practically, the fastest growing occupations in the US are home health aides, personal care assistants, medical assistants, software developers, nursing assistants, and registered nurses. All positions facing shortages.  All positions affecting our communities’ health. Who do we think is going to take care of us and develop tools that support our care as we age? Immigrants.

Second, Brett Kavanaugh’s Supreme Court nomination in the face of accusations of sexual assault. Again, outrage about power, fear, lack of empathy and its effect on our community well-being. Our Senate Judiciary consists of old white men without lived experience of assault and powerlessness (or they haven’t come out yet). Maybe the most powerful office in the country with a lifetime appointment affecting the wellbeing of all of us.

OK, other people can opine on these topics better than I can.

For me, the central feature is power – the imbalance of power. Those in power want to stay in power at all costs. I think it’s a human condition of the ages. Evidence, curiosity, empathy, have little role. We know that this imbalance of power is evident in our healthcare business practices and our healthcare decision-making. Fortunately, I still have a reservoir of pathological optimism. My parents lived through the Holocaust, the country survived the Vietnam experience. I believe that there are cycles of learning and relearning, and relearning again. I believe that the response to power imbalance is to get more people with lived experience and less power a seat at the table, especially the tables of governance.  For immigration and our government, our power is in the ballot box. Elect people with lived experience who grew up farther from power and wealth. Please vote and help your neighbor register to vote.  And I’ll get back to my advocacy to bring more people with lived experience to the tables of governance, design, operations, and learning in healthcare delivery, business, research, and technology.

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Patient Engagement – Careful What You Wish For

By | Advocate, Caregiver, Clinician, ePatient, Leader, Researcher | 2 Comments

I’m often asked about my take on patient engagement. These buzzwords are losing their meaning. Frankly, I find myself at a loss to answer, even though I say patient engagement is my passion. Engagement from whose point of view?

  • A person engaged in their own health – Isn’t everyone engaged in their own health? My symptoms affect me. I’m in pain. I can’t function as I’d like to. I’m sad. I’m anxious. I react. I manage or I don’t. I can accept, deny, adapt. I suffer, I advocate, I overcome. Maybe it’s my parent’s health or my partner’s or my child’s  It’s all engagement. I’m engaged in my own health. So maybe that’s not the question.
  • A clinician engaged in their patients’ health. My neurologist said he’s an expert in what works related to treatments and therapeutics for populations of people with Multiple Sclerosis, but he doesn’t know crap about me and my life. He wants to learn about what’s important to me and about my basic habits and circumstances – transportation, finances, culture, and spiritual values, family, hobbies, exercise, diet…. He’s engaged in my health. What if it’s not about his engagement with me?
  • A patient engaged by adhering to their clinicians’ prescriptions and medical plans. Certainly, a paternalistic and common view of engagement. I’m engaged when I follow all instructions whether I understand them, can afford them or can get to them. Wait, maybe it’s not about the patient-clinician relationship at all.
  • Patients engaged in governance, design, operations, and learning about medical care delivery, policy, research, technology, and business. People at the center of care (patients, direct care clinicians, and the people that support them) sitting at decision and learning tables like boards, advisory councils, departmental meetings, product design sessions, insurance company business meetings.

The challenge of giving a serious nod to patient engagement is that few of us are really prepared for success. Being super engaged in my own health means that I’m the CEO of my health team and that I manage myself and my subcontractors well. It means that I have a care partner that can step in when I can’t – a succession plan. It means that I do everything I can to operate at peak performance.  All while I’m sick or disabled:( The clinician engaged in their patients’ health means that they solicit and accept their patients’ expertise and they have the humility to accept how little expertise they have in non-drug, non-surgery treatment, or actually, much outside their specialty – like the reality of people’s day-to-day life challenges. Increasing patients’ engagement in governance, design, operations, and learning leads inevitably to pressure for transparent price lists before service, seamless transition from one setting or clinician to the next, on-demand self-scheduling, patient and clinician controlled health data sharing, access to and payment for non-drug, non-surgery treatments, funding research about outcomes that matter to people, and on and on.

I think we need to be more specific about what we mean by patient engagement. And be careful of what we wish for.

Photo by Fineas Gavre on Unsplash with text added by Health Hats

Expanding Engagement and Capabilities of People at the Center

Engage! Will patient engagement achieve “warp speed” this year?

May I Have Some – Time? Please

You say you want a revolution

By | Advocate, Leader | No Comments

Yesterday, I was listening to Casey Quinlan’s podcast, Healthcare is Hilarious: an interview with Victor Montori who wrote Why We Revolt-The Patient Revolution for Careful and Kind Care.  I haven’t read his book yet, but I will. The interview on Healthcare is Hilarious is stellar.

Merriam-Webster says a revolution is:

  • a sudden, radical, or complete change
  • activity or movement designed to effect fundamental changes in the socioeconomic situation
  • a fundamental change in the way of thinking about or visualizing something: a change of paradigm * the Copernican revolution
  • a changeover in use or preference especially in technology *the computer revolution *the foreign car revolution

One of the things that Victor said was that reformers are important, but healthcare is not designed for health and wellness, care and kindness. The entrenched forces will not fundamentally change with reform. It needs a revolution, a patient revolution. I’ve never been good at putting other people’s labels on myself – I don’t know if I’m a reformer or a revolutionary. During my professional and now activist career, I’ve seen myself as a catalyst for change – sustainable change that continues when you’re gone.

My revolutionary heroes include: Mary Wollstonecraft (sparked the change to allow women to have the right to full participation in society), Mahatma Gandhi (the power of nonviolence and forgiveness), Oliver Cromwell (translating the Bible into English so lay people could read it), Florence Nightingale (invented nursing and used statistical analysis to improve care), Albert Einstein (the theory of relativity changed how we think of time and space), and Rachel Carson (sparked the global environmental movement).

The relatively recent revolutions in healthcare that stand out to me include the discovery of anesthesia, legislation for Medicare, Medicaid, the Consumer Protection Bureau, Patient-Centered Research, and universal voting rights for citizens over the age of 18. Add value-based payment, elevators,  asynchronous communication,  palliative care, anti-viral medications, precision medicine, synthetic opioids, desalinization of water, mass-produced solar power, worldwide transportation (of people, food, products, and pests), smoking restrictions.

With some revolutions, there’s no going back. Anesthesia isn’t going away.  Neither are elevators. Every revolution has unintended consequences affecting some people badly, even lethally. Anesthesia can cause harm. So can elevators, asynchronous communication, and synthetic opioids. Legislation can be undermined or rescinded. Almost anything can be co-opted and diluted. Most revolutions are never-ending projects requiring constant vigilance and advocacy.

In my narrow world frame, I look for the magic levers of best health.  What small things make an outsized difference?  Obviously, drink clean water, eat just enough, don’t smoke, get plenty of rest, do meaningful work are magic levers. Maybe the revolutions are magic levers, too.

The revolutions that I’ve hitched to are:

  • People at the center of care sitting at the tables of governance, design, operations, and learning for research, policy, payment, technology, and care delivery.
  • Individual ownership (access to, contribution to, authorization for, and payment for) their own health data.
  • People and relationships at the center of care making decisions together for best health.
  • Healthcare as a right with universal access.

Note: people at the center of care are patients, direct care clinicians, and the people that support them.

I like to try to predict future revolutions, although my track record of predictions is terrible (I was never going to get married or have kids. I was going to keep my last real job until I was 70 and then I’d retire). The thing about revolutions is that they’re crazy difficult to predict and harder to consciously engineer. I’m old now. I don’t want to run anything anymore. I’m happy to follow revolutionary leaders who are charismatic, kind, caring, and persistent.  I can be a thought leader, a writer, and a solid team member. So, I am not the revolutionary.

Viva la revolution!

Photo by Sadık Kuzu on Unsplash

Failure is Under-Rated

By | Advocate, Caregiver, ePatient, Leader, Musician, Researcher | 2 Comments

I’ve told my teams over the years, if we don’t fail several times a week we’re not pushing the envelope and not doing our jobs. We weren’t tightrope walkers, pushing IV meds, or manufacturing artificial joints. We were innovators, learners, and leaders. Failure as a virtue is a hard sell – to almost anyone. My teams, my colleagues in leadership, editorial review boards always start by thinking I’m crazy.  Sometimes they eventually get it, sometimes not. Leadership usually wants to get A’s. In one health system I worked for, I reported that we successfully completed medication reconciliation in 40% of admissions. OMG, that’s awful! They said.  No, I said, that’s great! We’re failing. Let’s succeed. In 18 months we completed medication reconciliation 70% of the time.  It’s a lot harder to go from 70% to 80% than 40% to 70%. In research, we don’t publish when the study doesn’t prove the hypothesis. Yet, not proving is as important, if not more important, than proving. I was on an Editorial Review Board once that decided to solicit articles where the hypothesis wasn’t proven and something was learned. Over a 10-year span, we solicited exactly 0 such articles. Zero!

A definition of failure to some is the opposite of success. Not necessarily. Especially when it comes to learning and getting healthier. We don’t tell kids they fail when they fall learning to walk. They keep trying.  Same with learning to talk. As an adult, I find failure a motivator to try again.  As a thinker and a catalyst for change, I’m delighted when I succeed with 30% of what I try. It’s been the rare boss that’s accepted that. They’ve been the best bosses and we’ve done the best work together in my career.

For health, embrace failure. I did eye exercises twice a day for 8 months before my brain rewired and my crippling double vision cleared 80%. That’s 360 failures and one success! It’s taken years of trial and error to land on a balance, stretching, and strengthening routine that works for me. I stumble a lot, fall infrequently, and sustain only minor injuries when I do. I get frustrated when I see failure and stuck in the muck. Fail and try something else, that’s the ticket.

Failure flavors humility and empathy.  My best stories are of failure – my failures. People laugh with me.  We can all relate to failure. It’s the warp of our lives. Hearing about a failure, we naturally ask, and then? What happened next?  What did you learn? What did you try? What eventually worked?

So, failure, persistence, and humor are inseparable cronies. Keep trying and chuckle at the absurdity. That‘s life, health, music – anything worth doing well.  Persist and laugh. Eventually, who knows?

Photo by Nik MacMillan on Unsplash

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