Category

Consumer

Amateurs Among Professionals

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Musician | One Comment

I play in an amateur blues funk combo. Yesterday we had a gig at a local Jazz club. Hear it here. We played in a lineup of 9 amateur community bands,  each led by a professional musician. An entrepreneurial professional created more than 20 such groups,  Morningside Studio. All of us aspiring musicians have a chance to advance our musical dreams. Already quasi experts in our instruments (also taking individual lessons), we’re learning about making music as a team.  It got me thinking about health care. The vast majority of people and caregivers are amateurs gigging with professionals. Unlike the musicians, most have no interest in health care, just there because they have to, gone when they don’t. Others have great ability in their own instruments, their bodies, learning about working with a health care team. Some health care professionals are good team members. Others are not. Some are good teachers. Other not so much. Even the professionals are amateurs when it comes to their own health. For the most part, the only professional patients are those with chronic illness.

I’m struck by this constant challenge in healthcare: amateurs and professionals working together with that toxic overlay of big business. Can I learn anything from the combo experience? Well, I can leave a group if I’m not simpatico with the professional.  I can usually leave my clinician if we’re not aligned, but it’s much harder. I learn as much from fellow amateur musicians as I do from the professional. I learn much from others with chronic illness, multiple sclerosis, and others fine tuning their lives and their health. I look for one pearl a session from the professional musician. I’m delighted when I see it. Same with sessions with health professionals. Arrogant distracted professional musicians are a drag.  Arrogant distracted health professionals can be dangerous.  It’s a matter of degree.  Hat’s off to amateurs learning to work with a team.

Burning out professionals, oh my

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

Several readers commented about  the disruption of revolving door members of their professional  health team – those leaving a practice, with or without notice. One asked, why can’t organizations keep compassionate people-centered professionals? A good question. It takes time and effort as an e-patient to develop good relationships with professionals. When my clinicians have moved on, I am greatly stressed and my health is challenged. I was at a meeting recently of the Lown Institute, a predominantly physician group of burnt out or burning out docs committed to people-centered care. The main beef seemed to be with administrative burden / electronic record edging out face-to-face time between people and clinicians. Read More

Improving experience – decoupling a moving train?

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

I’m puzzled when people rate highly (very satisfied or satisfied) their experience in clinics and hospitals while still complaining about the experience. What is in the overall rating (would recommend)?  Is it a comparison with other experiences that weren’t as satisfactory, yet annoyances still occurred?  I have spoken with people and caregivers who say,

this experience was one of my best, but that’s not saying muchNone of them were very good. Or seeing the nurse practitioner was great, but it’s impossible to make an appointment that’s convenient to my life. One organization I’ve worked with asked people and caregivers what matter most to them in their experience. They said, we want to know when there are staff changes: they developed a good relationship with a clinician or a direct care staff person and that person leaves the practice. When a question about that was added to the questionnaire, the scores dropped.  Who knew they cared? Some organizations stop with high scores and don’t look further. It’s hard to keep up the routine of running the office or unit and still find time to listen in different ways (rounds, focus groups, referring concerns to someone with time to listen).  It’s also hard to have time as people and caregivers to find someone who will listen to your concerns. I have to get to work or school or I’m not really sure what’s bothering me about this experience but I’m unsettled.

Read More

What’s the Problem with the Experience of People at the Center of Care?

By | Advocate, Caregiver, Consumer, ePatient, Family man, Leader | One Comment

Wearing my many hats: e-patient, caregiver, nurse, informaticist, and leader, I am blessed with mostly positive experiences on my health journey.  At worst, my experiences are seriously annoying. This week, attending a benefit for MITSS (Medically Induced Trauma Support Services), I’m reminded that not everyone is so lucky. As I scan the industry several problems with the experience of the people at the center of care (patients, caregivers, clinicians, direct care and support staff) jump out: Read More

I thank you God for this most amazing day

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

I thank you God for this most amazing day, for the leaping greenly spirits of trees, and for the blue dream of sky and for everything which is natural, which is infinite, which is yes.

e.e. cummings

An email this morning from the library told me that the reserved book, Wright Brothers by McCullough, had arrived. My big stressor was that yesterday I picked up another book, Quicksilver by Stephenson – all 925 pages. OMG, how can I get all that read in a week!!! Nice stressor, ehh? Also yesterday, my acupuncturist told me I hadn’t looked happier in  years. Wow:) Read More

Habits – Health’s ingredients

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader | 2 Comments

Habits are the ingredients of health. My chiropractor tells me that my exercise habits should be sustainable. I need to keep them up no matter my life pace. Now I alternate days of 45 minutes of balance and core strengthening exercises  with 60 minutes of recumbent bike riding.  I could do that when working full-time and when not. Smiling and greeting you at a threshold is a habit. A habit for my mental health and yours. My newest habit is to stop putting food in my mouth every day at 7:08p.  Why 7:08?  No reason. This blog is a habit: one idea germ a week, 20-60 minutes of writing every Sunday for 3 years. Helps me keep my disorganized mind in order.

Nothing so needs reforming as other people’s habits ~ Mark Twain.

Health Literacy Month

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Researcher | 2 Comments
Last week I was describing a mutual friend to my son as pathologically optimistic. Overhearing us, my seven-year old grandson asked me what that meant.  I started in with glass half full, glass half empty. Oh, Opa, he interrupted me, I know what optimistic means, what does pathologically mean?  I was using language my grandson didn’t understand and he questioned me. I attend a weekly conference call of OpenID HEART, that I’ve written about here before, and I understand about a quarter of the discussion – very technical.  I am not as ready as my grandson to interrupt and question, even though when I have, my very basic language questions are respected and welcome.  Rather I usually take notes and ask the questions on the list offline. I often facilitate meetings. I try to pay attention to the language people use and explain acronyms or jargon.  If I see a furrowed brow, I ask the furrower if they have a question. As a direct care nurse, I made sure I created teach back moments when helping people at the center of care prepare to manage without me.
Often I have the sense that people consider literacy as a dumbing down – write to the fifth grade level, eighth grade – whatever. Many colleagues in any gig I’ve worked, say, communication sucks! I, however, am continually amazed that we can communicate at all. My friend, Helen Osborne at www.healthliteracy.com tells me that literacy is about language, age, culture, disability, emotion, and cognition (genetic and evolving).  That’s a lot to consider when communicating. My communication usually just falls out of my mouth.

Read More

Adapting – Balance

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

When diagnosed 7 years ago with Multiple Sclerosis, my neurologist told me I’d had MS for 25 years. Why didn’t I know it before? He said that I was a master at unconscious adapting – my nervous system and brain adapting, creating new pathways, and my creativity in finding alternate ways to do stuff. Adapting to maintain. Now as my balance and my left leg strength diminish, I’m adapting again. I’ve left my job as well to find a better balance in my life. More adapting.  This time it’s more conscious adapting. Building my core strength, compensating for my lack of proprioception (the fifth sense of knowing where your body is), and continuing to meet my personal mission. Before I was diagnosed I composed my mission: Increase the sense of balance patients, caregivers, and clinicians feel as they work together toward best health. So, balance as not falling and life in harmony – yours and mine. Magic levers of best health: balance, harmony, adapting. Onward!

The jumble of research

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Researcher | No Comments
Next week, I’ll be attending PCORI’s (Patient Centered Outcomes Research Institute) Communication and Dissemination Advisory Team meeting in DC. Research is ink on paper until people at the center and clinicians receive the results in an understandable and useable form: communication, translation, dissemination. I speak with many of you  about what matters to you. I hear you ask:
  • How does research apply to me? For example, a study reports that one treatment is likely to result in improvement 40% of the time. This treatment  results in 10% fewer people dying within 5 years than that treatment. 20% of people taking drug A are likely to have some nasty side effect.  If research is about groups of people (populations), how do I know whether to take one path or another, based on research?
  • Health care seems to be a Tower of Babel – communication is tough in the best of circumstances. How can we best communicate complex information from clinicians to people at center, from people at center to clinicians, or between specialists?
  • How do my personal values, religion, or culture affect research results?
  • The person I care for has changing ability to understand (getting older, more confused, etc.). How do I best share research results?
  • What about research that isn’t published, doesn’t prove the hypothesis? It all seems so uncertain.  How is that communicated.
  • What about word of mouth, popular media, or social media?  How do I know what to believe?
  • If I am one of the people who is a subject in research, how do I protect my privacy?
I’m hoping that we begin to assemble a framework for understanding communication and dissemination of research. Right now it seems like such a jumble.

Belonging – a matter of perception

By | Caregiver, Consumer, ePatient, Family man | One Comment
During the inevitable ups and downs of life, I feel better when I belong. The pointy end of illness, loss, unintended change, stress, can be softened by belonging. Belonging to a family, team, community. What is this feeling of belonging? Being with family, comrades, teammates, cronies, neighbors. My wife and I are visiting old friends.  Old friends know the good, the bad,and the ugly and still like you and want to be with you. They have been with you through it all. Hence, old friends. Our neighbors look out for us, they have our back, literally. We belong. Belonging fuels a positive narrative that empowers me. I can take risks, I can survive mistakes, I can recover, I can feel better, I can find some peace when I belong.
Belonging feeds itself. To belong, I need to be a family member, a teammate, a neighbor. It’s an investment with some risk and some return. Belonging has an open heart. Paradoxically, an open heart is risky with the possibility of huge return and huge hurt. Yet a better risk than Powerball.  Turning a negative narrative into a positive narrative increases belonging – it’s a superpower. It’s a matter of perception. It’s a magic lever of best health.