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ePatient

Equity: more to achieve the same #005

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Episode, Leader | 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

Crossing Thresholds

By | Caregiver, Clinician, ePatient | One Comment

Before I officiate at a wedding, I meet with the couple. Getting married is crossing a threshold. There’s a moment before which you aren’t married, after which you are. What’s the difference, one moment to the next?  I’ve officiated at 26 weddings over 40 years. One time, the couple couldn’t say.  I didn’t officiate.

We continuously cross thresholds in our lives and in our journey to best health. A threshold is a beginning, a change – before we weren’t, now we are. We cross a physical threshold when entering a building, a room, a town… We cross a threshold when we enter a community, a relationship, an experience. We cross a threshold as we park our cars, enter a clinic, go for an MRI; when the doctor or nurse enters the room or responds to an email; when we call our insurance company; when someone asks, How are you? We cross a threshold when we feel a lump, hear a diagnosis, throw up, panic, feel pain, fall. Before we didn’t, now we do.

Crossing a threshold can present us with limitless possibilities. Who knows what might happen? Anticipation, excitement, hope. Some thresholds upset our sense of balance, our inertia. Why me? Distraction, hopelessness, annoyance, frustration, fatigue, rage  Crossing a threshold can energize or suck energy, depending on the moment and perspective.

A pivotal moment for me as a nurse was discovering the opportunities I had to experience some of these threshold crossings, moments of imbalance, with others. Having a companion or a guide at these moments can be huge. A smile, a touch, information, can change the trajectory of that crossing, speed the regaining of balance, add energy, provide relief, increase hope. My mission became: to increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health.

Threshold crossings occur around us constantly. Consider being a companion, a guide when you notice someone approaching a threshold. You can make a difference in the crossing.

Photo by Mantas Hesthaven on Unsplash

The Minute Before and the Minute After

A new threshold – laid off

Guests on People’s Health Journeys

 

May the Force…

By | ePatient, Family man | No Comments

Tragedy: the common unifying force of life, no matter your genetics, your circumstances, your behavior, your health. As you season the likelihood of experiencing tragedy increases. A tragedy can be a death, diagnosis of serious illness, break up, job loss, legal difficulties, downsizing, loss of a contract, loss of key staff, loss, loss, loss.

Family and friends often text me, May the force be with you, when I’m in the midst of a personal tragedy. What is this force? How does a person, a family, an organization, or community survive a loss, a tragedy and regain best health? Resiliency. According to SAMHSA resilience is the ability to:

  • Bounce back
  • Take on difficult challenges and still find meaning in life
  • Respond positively to difficult situations
  • Rise above adversity
  • Cope when things look bleak
  • Tap into hope
  • Transform unfavorable situations into wisdom, insight, and compassion
  • Endure

The American Psychological Association reports the following attributes regarding resilience:

  • The capacity to make and carry out realistic plans
  • Communication and problem-solving skills
  • A positive or optimistic view of life
  • Confidence in personal strengths and abilities
  • The capacity to manage strong feelings, emotions, and impulses

I add my superpower as an attribute: accepting what is.

Can resilience be learned? How can we increase the resilience capacity for ourselves, our families, our organizations, and our communities? What tools can help increase our resilience capacity?

__________________________________________________

This post above was one of my first in August 2012 (lightly edited).  It still works.

Since then I’ve realized that someone with resilience has spiritual strength. I actually first learned this from my Opa (grandfather), Henri van Leeuwen, who survived the Bergen-Belsen concentration camp during the Holocaust. He told me that his strong spiritual core made the horror survivable. Finding others with the same was key to maintaining that core. Having someone in our circle who has quiet resilience helps those around us face tragedy. Some people are born with a strong spiritual core. Others not. My Opa said it came to him at Bergen-Belsen. So it can be learned or found with guidance and example. Resilience is a muscle like patience. It needs exercise and often a coach.   May the force…

Photo by Diana Beidler Simonton

The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge.  Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements.  Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines.

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Manage the Stress You Can

By | ePatient, Family man | 2 Comments

When my son, Mike, was dying I knew I needed help supporting Mike AND survive and thrive myself.  I went shopping for a counselor. No surprise to you – I am not an easy patient. But I was willing to do the work. My shopping eventually led me to three counselors.  The first, a friend highly recommended. This friend had survived leukemia with several years of chemo, stem cell transplant and heart surgery. His mental and spiritual health were shaken. I could see that this counselor had really helped him. I made an appointment. The guy popped Altoids Curiously Strong Peppermints the whole time. To keep himself awake? No go. Still shopping. The next counselor I knew from work. She was on my providers’ council. She asked questions. I answered. How did I feel…? I didn’t need talk therapy. I had family and friends. I needed a roadmap. How do I manage myself? The third counselor spent 5 minutes asking me about diet, sleep, exercise, pooping, my family, transportation. You have to take care of the basics to manage grief. Then he said, there’s stress you can manage and stress you can’t. Grief is stress that’s hard to manage.  There it is. It’s not going away. Now tell me your top two stresses in your life right now. That was easy. On top – My mother. (That’s another story for another day). Tell me more. I told him more, another 10 minutes. Then he gave me three things to try to help manage the stress with Ma. I spent 45 minutes of the allotted hour with him! He was a keeper.  I tried all three recommendations with Ma. I could pull off two. Rapidly less stress in that arena. Therapy from a master is worth shopping for! He’s still part of my team. I talk to him on the phone from time to time – like when I was first diagnosed with Multiple Sclerosis.

I find now that take care of the basics and manage the stress you can has helped me enormously to manage the continuing serious annoyance of MS. How do you manage the stress you can?

Photo by Pim Chu on Unsplash

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Best Spiritual Health, Dying

By | Caregiver, ePatient, Family man | One Comment

Sixteen years ago on November 18, 2002, our son, our brother, our friend, Michael Funk, died of metastatic melanoma at age 26. Mike said that he wasn’t born with a tattoo on his butt telling him how long he had to live.  What a gift.  Mike was a gift. His perspective about dying was a gift. One day we were sitting at the kitchen table talking about dying and superpowers. Mike thought that he and I had the same superpower: we both accept what is. Yup, he died young. That’s life. You open your heart and tragedy just walks right in. What’s the alternative? Closed heart? Not for me.

Welcome, my dear Health Hats blog readers, let me introduce you to the birth of Health Hats, the Podcast. We are here to empower people as they travel together toward best health. Best health includes physical, mental, and spiritual health. Today’s blog post and podcast are about Mike who found his best spiritual health over the last year of his life, as he died.

I decided that my inaugural podcast should be about Mike. The timing is right and my heart is full and open. I’m taking a Seth Godin course about podcasting. This fellowship, this learning community, has given me strength and tools. On my 50th birthday party at the Potato Barn in Schoharie County, NY, my boss, colleague, and friend, Bob Doherty interviewed Mike.  It was five months before he died. That video is a treasure. The pressure in my stomach and chest threatened to leak out through my eyes as I listened to every sound and silence. Can I really do this? I must be nuts. But remembering the roller coaster ride of humor, wisdom, misery, love made it possible, no, necessary to go on. That first night after deciding on this subject for this first podcast, I couldn’t sleep from bursting with emotion, I recorded all the stories I could remember about Mike and his dying. The next morning I called Bob and we talked about his perceptions of those days – interviewing Mike, me at work, and the spiritual health Mike had. We spoke about the death of Bob’s wife who died a couple of years later. This podcast blends all that.

Here’s an excerpt of the poem Mike wrote shortly before his death that I read on the podcast.

the way I become about dying

I am not things.

I am sums of things,

guessing that I’m part of God

wondering if there is some place where my soul will go

from where I might look down

with advantages my eyes did not have

and see the tops of trees

which I used to walk beneath for

shelter from rain and sun,

and see the things go together

like continental tracks of land

 

I am this very moment, dying

from headache tumors that

erase my cognitive ability so that I might

be retarded when I wake up tomorrow,

or I might know answers,

or I might still be guessing

 

Links

Mike Funk Podcast HHP001

Interview with Mike

Interview with Bob

Full poem of Mike’s

Note: I have applied for listing on iTunes, Stitcher, Google, and more. As of Nov 18, 2018, 08:30, these aren’t live. But they will be in a few days. I will podcast at least twice a month. Please subscribe.

Best Health at End of Life #001

By | Caregiver, ePatient, Episode, Family man | 6 Comments

Episode Summary

Best Health includes physical, mental, and spiritual health. Michael Funk, my son, died at age 26 on November 18, 2002, of metastatic melanoma. Mike found his best spiritual health in the last year of his life as he died. As Mike said, I wasn’t born with a tattoo telling me how long I had to live. This first episode of Health Hats, the Podcast, celebrates Mike’s journey through a montage of an interview with Mike several months before he died, a conversation with Bob Doherty who conducted that interview, and stories about my experiences with Mike. Listen as we try to make sense of this reality.

Episode Notes

Links

Interview with Mike

Interview with Bob

Full poem of Mike’s

About the Show

Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen and I have worn many hats in my 40+ years in healthcare as a patient, caregiver, nurse, informaticist, and leader. Everyone wears many hats, but I wear them all at once.  We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel.  Let’s make some sense of all this.

My guests and I reflect on what works for people, professionals, and communities in their journeys toward best health: learning, making choices, communicating, and adjusting to realities. We can range from personal, clinical, technical, entrepreneurial, organizational, to whatever interests me at the moment. Join the ride!

Readers of Health Hats, the Blog, we will publish a Podcast in at least two of each month’s weekly posts. To subscribe go to the blog https://www.health-hats.com/

CMS: Use Patient Experts in Measure Development, but Don’t Pay Them?

By | Advocate, ePatient, Informaticist, Researcher | No Comments

CMS (Center for Medicare and Medicaid)’s work on Value-Based Measures matters for patients and caregivers because we seek affordable, accessible, equitable, and effective medical care. Or in English: Transparent cost within my means, in a location I can reach, in a fair and unbiased manner, for care that is likely to move me and mine toward best health. We, patient/caregiver experts, need a seat at the tables of governance, design, operations, and learning in the medical industrial complex to advocate for that kind of care.

I sat in one such seat (ten of twenty members represented the patient perspective!) on a CMS TEP (Technical Expert Panel). Here’s a blog post I wrote about it Oct 2017 and here’s the associated final CMS report. As I wrote in that post, Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians, and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.

The Panel completed its work in July and CMS just published the final report from the Panel. We did good work, our recommendations were heard!

 

Important to us, People at the Center of Care, are the following recommendations:

  • CMS should support measure developers, for example, by promoting the development of a toolkit to assist developers with patient and caregiver engagement. Companies and researchers that develop measures have just begun to learn how to engage patients and caregivers in the work of creating and testing quality measures.  They need a roadmap (toolkit). The toolkit should include project planning that includes patient advisors, orientation for patient advisors, guides that researchers can use to recruit patient advisors, communication tools that patient advisors can understand and find.  
  • Patients and caregivers need to be engaged in all aspects of measure development from priority setting to reevaluation. Just like in any aspect of health care, patient and caregiver experts need a seat at the table of governance, design, testing, sharing and learning.
  • Priorities for measures should be based on domains or conditions, not clinical settings or programs. Often measures are hospital-based or office-based. Yet, as patients and caregivers know, care occurs across settings and involves a team of professionals.  The measures should reflect that span of care. For example, rather than developing measures intended for hospitals or eligible providers, CMS would focus instead on a clinical domain such as osteoarthritis. In targeting osteoarthritis holistically, CMS can develop measures that track patients across the continuum of care they receive for that condition—developing measures that assess performance among the primary care providers, radiologists, pathologists, rheumatologists, orthopedic surgeons, and other clinicians that might be involved in the treatment of that condition.

The good news is that CMS has already published Requests for Proposals (RFP) about including patient advisors in the measure development process. The bad news is that these RFPs do not expect patient experts to be paid for their work by measure developers. Currently, CMS expects that participants in Technical Expert Panels work pro bono or be subsidized by their employers. Measure development companies, academia, and national advocacy organizations willingly have their employees volunteer with CMS since they benefit from the networking connection, early intelligence, and addition to their resumes or websites. They are still paid their salary for the work.  On the other hand, patient experts, included in measure development are usually not so employed and are not compensated for their time. This is not reasonable or equitable. Expertise has value and should be compensated. I am not paid for my work with CMS. I don’t care about padding my resume. I don’t need a better network – part of my value is my network. My time and skill are valuable. Oh well, one step at a time. PCORI gets it. We have more work to do with CMS.

Photo by Jordan Rowland on Unsplash

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2018 Healthcare Literacy in Research Conference

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

I attended the tenth annual Healthcare Literacy in Research Conference in DC last week as a PCORI Ambassador. As is my habit, when I go to conferences I think, So what? How does this help lay people navigating health and illness?

What is literacy anyway? Ability to read and write? No, that’s not enough. Maybe it’s more. Keywords may include: understand, communicate, useful, culture. Understand whom? People understanding professionals? Professionals understanding people? Who communicates? People, communities, professionals communicate with each other. Communicate what? Useful knowledge about illness, health, or life? Or all of it? In a culture of doctors, nurses, hospitals, and clinics? OR culture of people and communities?

So, at the conference, I was looking for co-produced research (researcher and patient partners) about lay people, professionals, and communities understanding each other to increase useful knowledge about less illness and best health.

Here’s a sample of the best of what I heard and learned.

  • Family literacy programs: A call (again) for health literacy in partnerships with adult basic education: In search of ‘new oil’ and ‘new lanterns.’ Maricel Santos. The adult literacy world and public health need to spend more time in each other’s worlds. The goal is not to make things simple, but to make them understood. Literacy existing in the context of life helps literacy matter. Here is an article by Santos. Nice.
  • One of my favorite posters, Helping Consumers Choose and Use Health Care. Stephen Rush. Readable, large font, high contrast (unlike many posters which are small font, low contrast at a literacy conference). Very practical. Introducing Just Plain Clear Glossary (justplainclear.com)
  • Digital Literacy in an Urban Cancer Population: Who are we leaving out? Alison Petok, Sidney Kimmel Cancer Center, Thomas Jefferson University. My 2 cents: In spite of the literature saying that smartphone use is on the rise and that many use their phones for health, the distribution of internet access is variable across demographics and the proportion of those using a health app more than twice is low. This poster describes this variation in more detail and describes hosting workshops to increase comfort with using portals and health apps. My mom used to annoy me. I was her personal help desk. I suggested she find a 15-year old at church, pay $10/hour, for her personal help desk. She shifted from flip to smartphone and started using health apps. And stopped calling her cranky son.
  • Health Literacy in Health Systems: the association between health service providers health literacy, awareness, and attitudes toward health literacy promotion, and patient communication. Diane Levin-Zamir and Shirley Mor from Israel. Health literacy in the context of the settings of medical/patient relationship (hospital and clinic cultures), not the single focus on patient health literacy.
  • Health Literacy and Health Communication in the Social Networks of New Mothers. Tetine Sentell. Another presentation considering the context of health literacy.  In this case, social networks. Where do mothers get health information about their pregnancy? (Mother, mother-in-law, friends, colleagues) Sad to say, their husbands are seldom part of that social network.
  • Communication in the Dental Clinic: Describing the role of health literacy and nonverbal behaviors. Dafna Benadof from Chile. First, love seeing dental as a study area. Dental health is a great barometer of overall health, yet, similar to behavioral health, vision, and hearing, considered separate. Second, so much of health literacy is the written and spoken word. Gestures, facial expressions figure in as well. This study looks at the similarities and differences in nonverbals between patients and professionals.

I was disappointed that I saw few co-produced studies. The research was mostly about illness literacy of lay people in the cultures of doctors, hospitals, and clinics with notable exceptions such as those above. Slowly, we progress. A valuable conference. A good use of my time.

Photo by rawpixel on Unsplash

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