#SDM – a floor, not a ceiling

I am a patient, caregiver, and nurse – an advocate of shared decision-making (#SDM).  My health team operates in a collaborative process that allows us to make health care decisions together, taking into account the best scientific evidence available, as well as my values and preferences. (See this site for more info.). Click here for my other posts about SDM. Yet SDM sometimes makes me feel agitated and disappointed. SDM is a floor, not a ceiling – necessary but not sufficient.  Continue reading

Secretary General of Your Health Team

I want to be a good leader of my healthcare team. How would I know?  Such a swirl of activity. This week my ophthalmologist wanted to refer to me another ophthalmologist.  She said she’d email her to introduce me, send over my records, and have her scheduler arrange the appointment. I’ll follow-up if I don’t hear from the scheduler in a week. My chiropractor wants to hear what the massage therapist and physical therapist recommends and aligns his plan with theirs.  My neurology nurse practitioner called me to say that the insurance company won’t cover the brand name injection I’ve taken for years because there’s a new generic medication. She doesn’t think it’s been tested enough on people before FDA approval. Instead she will prescribe a different dose of the brand name drug instead that’s still covered.  Is that OK with me?

My healthcare team is like no other team in my life – not like family, not like business teams. It feels like a team in the clouds. They never gather together as a team.  If they communicate at all it’s through me, or emails and snail mail reports, or if they’re in the same system through the electronic health record. I can think of once in 7 years that any clinician spoke to each other directly: my primary care doc called the neurologist when I fell and sustained a concussion. My wife has attended a couple of doctor appointments with me when I was first diagnosed with MS. Several times a year a prescriber speaks with a pharmacy or medical supply company to clarify an order. My family likes to stay current about my treatments, risks, appointments, and stress. They talk with me and among themselves.

Who is my team?  Me, my wife, my sons and their families, my sister, my doctors and their teams, other clinicians (massage therapist, chiropractor, acupuncturist, physical therapist, optometrist, optician, pharmacist), medical supply companies, insurance company. I’m fortunate. I’m a good e-patient and I’m a clinician myself.  I’ve selected this team (except the insurance and pharmacy benefit companies).  One of my best barometers of team effectiveness is usually how the team operates when the leader isn’t in the room. Do they work better when she’s present or absent? Do the team members treat each other with respect? Is communication open? Are they clear about accountability, do they meet their commitments? But in healthcare there are so many other factors and power dynamics between clinicians, office staff, caregivers, insurance companies, administrators.  It’s crazy complex – like being Secretary General of your health team. I wonder what Ban Ki-moon would advise?

Better Clinician Experience, better #PtExp erience

I attended a meeting last week of Mass Health (Massachusetts Medicaid)’s Payment and Care Delivery Quality Improvement Work Group (a mouthful).  The main topic: patient experience. Measuring #ptexp is critical and challenging. There’s no best way to measure, and it’s quite expensive. Who loves to fill out surveys? I do when I’m seriously delighted or completely pissed off.  Mostly I couldn’t be bothered.  It’s time-consuming, especially when I’ve been to my many specialists in a short period and get surveys from each. The questions are usually difficult to answer. They ask specific questions about similar events over time. Do they want to know about the last visit, or all the visits in the past three months? The questions often don’t ask about what’s important to me. I fill out the survey and I wonder, what will they do with this?  Will anything improve?  Will the doctor or nurse have more time with me?  Will they look at me or the computer screen?  Can I bill them for my time? My doctors know that I write about your experience (the experience of the people at the center of care).  They tell me about their frustrations with their jobs. They talk most often about administrative tasks – the electronic health record and having so little time with each individual. Continue reading

Learning from What Doesn’t Work

Notice how young kids learn to walk. Try, fail, try again, over and over until they get it right. On the other end of the continuum are politicians accusing each other of changing their minds. Dragging up statements from years ago to slap each other with a change in direction. When did they lose their ability to be proud of learning? When did voters start expecting politicians not to learn, recognize failure, and try something else? I don’t understand this. I once said I would never get married, I would never have kids. Now I’ve been married for 40 years and have a fabulous family. I learned much since my ignorant adolescent days. Living successfully with chronic illness requires trying, failing, getting up again and trying something else. Diagnosis depends on testing, trying a treatment, measuring its success or failure, and repeating the cycle until something works to decrease suffering. The tragedies are when trying never leads to a better life, or the team stops trying. Research faces a similar dilemma. Supposedly research tests hypotheses. One treatment or approach works better than another. Yet peer-reviewed journals publish articles that prove the hypothesis and doesn’t publish articles that disproves the hypothesis. What is this bias? I know that I have learned more from my mistakes than my successes. What if I couldn’t recognize a mistake or a failure and kept sticking with it? Thank God I can shift and try something else. I’m more skeptical when th change is degeneration of values. Less empathy, more fear, less generosity, more cruelty. I could appreciate more empathy, less fear, more generosity, less cruelty. Let’s honor rapid discovery of and learning from mistakes and courage to try something else. Let’s learn from those kids.

#Innovation and #Mentoring

I’m attending an Entrepreneur’s Think Tank at the local Career Center and the Tech Sandbox in MA’s MetroWest region. I helped start something in 2012 called Pain Points in Healthcare Mini Unconference, now Healthcare Innovators. Each of these groups assembles people with bright ideas trying to set up a viable business. Often people with more passion than practical knowledge seeking to fill in their gaps.  I am 63 years old, seasoned with energy, ideas, connections and yes – gaps. I’m older, good at what I do, and still in need of mentors and coaches. How else will I stay good at what I do? Searching for, finding, and offering mentoring is serious fun. Continue reading

Presidential Candidates on #Healthcare?

How do I research presidential candidate views on healthcare? What if I google each candidate’s web site?

Donald Trump has a Positions page on reforming the VA Medical System. Much hyperbole, but he does say: Under a Trump Administration, all veterans eligible for VA health care can bring their veteran’s ID card to any doctor or care facility that accepts Medicare to get the care they need immediately.

Bernie Sanders has an issue pages for Fighting to Lower Prescription Drug Prices (allow Medicare to negotiate with drug companies, allow Americans to buy from Canada, require price and cost transparency, prohibit deals that keep generic drugs off the market, plus more). Elsewhere he has advocated for universal national health insurance. Bernie has the most substance. Continue reading

Last Post, New Year

Last post of 2015. Reviewing the year in 51 blog posts, we discussed:

  • Death and Dying
  • Give Me My Dam Data
  • Values
  • Leadership
  • Work/Life balance
  • Grace
  • Ignorance, Uncertainty, Research
  • Music
  • Caregivers
  • Experience of People at the Center
  • And more

I’m looking forward to the adventure of the new year: Maintaining my health, contributing to the experience of we people at the center, playing the blues, watching my grandkids grow, hearing from you.

From Mark Twain:

  • All you need in this life is ignorance and confidence, and then success is sure.

Patient Reported Outcome Measures (PROM)

When I first heard about Patient Reported Outcome Measures (PROM) I thought they were talking about pulse, blood pressure, weight, pain, anxiety. I didn’t start exploring further until 2012 when I was on the federal government’s Blue Button Initiative – clicking a button in your electronic medical record to download information from that record into human or machine readable form. I was on the Content Task Force. I cared about what information was to be downloaded. Based on comments I had received from you readers, I tried to get the Task Force to add what works and what doesn’t, when I’m scared or in pain. No luck, as if I was speaking Klingon. That started my exploration of PROM in England’s National Health Service. The National Quality Forum published a report in January 2013 about PROM. PROM’s have been developed for depression, pain, sleep, joint replacement. You can see an example on a Dartmouth web site called https://howsyourhealth.org/ where you can do a checkup of your general health and health risks.

PROM can be used for an individual or for populations, just like any research.  For people, the challenges is having the chat with your primary care provider. Will they have time? Will they engage with you? For populations, the challenge is the methodology.  Will everyone do it the same? Is it filled out only by people who have the knowledge, language, motivation to enter data? What about people who need their parent, neighbor, caregiver, child to fill it out? This is an exciting puzzle. I need to learn more.

Medical Residents and Safety

Listening to an article on Morning Edition this week, Is It Safe for Medical Residents to Work 30-Hour Shifts? A study has begun randomly putting some residents in 30 hour shifts and others in 16 hour shifts to see if there is a difference the proportion of patients who die within 30 days (can’t believe I’m writing that, but the outcome being measured is 30 day mortality, really). In 2003 a law was passed limiting residents to 16 hour shift maximums. Hospitals want to go back to 30 hour shifts because the 16 hour shifts are more expensive. A concern is that 30 hours is too long and dangerous.  As a young emergency and intensive care nurse I found 12 hours to be my limit. Continue reading

Amateurs Among Professionals

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.