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MS

Hardwiring Continual Learning

By Caregiver, Consumer, ePatient

I’m learning to type. Amazing after all these years that I still hunt and peck. Cool though to know that I can still develop new brain pathways and muscle memory. Continual learning with a swiss cheese multiple sclerosis brain:)  I watch my grandsons learn, they just keep at it. Fearless repetition. Why is it that I’m reluctant to learn from others’ experience? When I first had kids, I was told to kiss my life as I knew it goodbye. I didn’t believe it, I didn’t learn from those ahead of me until a week after my oldest was born. Now with health care, seldom do we learn, or rather seldom do we have sustained learning. After decades in health care I feel like I’m seeing the same stuff recycle.  Is patient centered really new? Aren’t ACOs a retread? Quality Management is still only good management. Although there is a treasure of science of best practices, we know that clinicians struggle to keep up, break inertia and change practice based on evolving evidence.

Hardwiring continual learning is a magic lever for best health for individuals, organizations and the health care system. Personally, I only have so much energy and space for learning. Inertia is critical to getting on with life.  Success is inertia for what works, learning for what doesn’t. Continual learning requires mindfullness. How do we design continual learning into our lives, our relationships, our products, and systems?

Give Me My Damn Data

By Caregiver, Consumer, ePatient
Making decisions about my best health requires information, wisdom, faith,and luck. Information comes from data, observation, and communication. Wisdom comes from experience and reflection. Faith is trust. And there’s a crap shoot in choices, who knows. For me health care decisions is a team sport, best done when I’ve been able to hand-pick my team – professionals and loved ones. Necessary to my decisions is access to my medical record. Access to my medical record by itself is like drinking water of unknown quality from multiple fire hoses. I have at least ten medical records, seven of them electronic. My primary care, neurology, ophthalmology, neuro-ophthalmology, cardiology, and urology records all electronic and on different systems. My massage, acupuncture, and chiropractic records, all paper. Not to mention my electronic Personal Health Record on Microsoft HealthVault that I use to try to consolidate them all.  I have a chronic illness but I function well. I’ve never been an inpatient. Are you dizzy yet. My periodic, episodic decisions are somewhat based on the data in the records, but more on knowing my nonnegotiables (e.g., nothing that makes me depressed) and having faith in my professional health team. I worry about two scenarios related to my medical record:  1) I want all of my health team to have the same information to share among each other – primary care to specialist, specialist to specialist, and specialist to primary care (relevant history, allergies, medications, procedures, diagnostic study results, impressions, diagnoses, unresolved dilemmas, next steps). Now I have to compile it to share. 2) I want the information readily accessible to whoever takes care of me in an unexpected situation when I can’t fully communicate for myself like when I fell, had a concussion, and went by ambulance to the ER (Current medications and medications that didn’t work, allergies, doctors, procedures, relevant history, recent diagnostics studies, ability to communicate, ability to learn, caregivers, typical reaction to pain and the unknown, what works to relieve pain, inform, and calm, and cultural and spiritual needs). Ideally, I would have a health partner with me to help, but I might not – luck.

In the face of this quagmire, I marvel that some providers question whether I should have real-time, unfiltered access to my medical record.  If I don’t, who will? They don’t. Nobody has unfiltered, real-time access to my complete record. Decision-making is a minefield of insufficient information, wisdom, sensitivity,or trust with awkward emotion and  bad luck. Access to real-time, unfiltered information is necessary to decision-making, but insufficient. Give me my damn data.

Magic Lever – Trust

By Consumer, Leader
Best health builds on trust. Trust in yourself, trust in your health team, trust among your team, and trust among the leadership of your health organization. Health is possible without trust, but best health is not. Trust is like the golden rule: simple, obvious, painstaking to attain. Trust contains self love, an open heart, self-confidence, vulnerability, fairness, humility, single-minded purpose, communication, risk. Best health is part genes, part environment, part right living, part luck. Much that can’t be controlled. Trust is somewhat controllable. Trust in yourself is marginally controllable.  I’m fortunate that I mostly trust myself. I feel like I’m trusting myself when in doubt about my choices I default to accepting my decisions and actions as right and good. I’m happy with 75% success. Doubt and regret take its toll. With MS I have to budget my energy carefully. Doubt and regret sap my energy. Trust in your health team is also somewhat controllable. I’m fortunate that I can select my health team members. Selecting some means rejecting others. I remember when I was grieving the loss of my son, Mike. I went through 3 grief counselors before I found one that I trusted and worked well for me. I felt lucky that I could find three. Many can’t. Although its been  years since Mike’s death, my grief counselor is a member of my health team and will always be. I trust him. I’m open to using his counsel when I need it. Trust among your health team can be elusive.  Fortunately, a team you choose is predisposed to trusting each other on your behalf-single-minded purpose. But when your team is a surgical team, a multi-disciplinary team, an inpatient team, a nursing home team, a rehab team, you have far less control of that team. They may or may not trust each other. Your advocate can be helpful in communication and single-minded purpose. A team that trusts each other will be more likely to focus on your best health, communicate with each other about you, be open to your uniqueness, and practice safely and kindly. As a leader, the most rewarding activity for me was building a team that trusted me and trusted each other. Once built, those teams did amazing work for you. The most distant trust is the trust among the leadership of the health organizations that care for you. Those organizations include clinics, hospitals, diagnostic centers, rehab facilities, home care … any organization serving you. Frankly, in my experience few health organizations are themselves healthy. The bedrock of a healthy organization is a leadership team that trusts each other. Trust within the leadership team is the same as trust for yourself: open heart, confidence, vulnerability, fairness, mission, communication, risk. Patrick Lencioni writes eloquently about organizational health. Read more in his book, The Advantage: Why Organizational Health Trumps Everything Else in Business. I have spent most of the last 20 years of my career as a change agent and choreographer. The heights attainable are directly related to organizational health, especially the trust within the leadership team. Sustainable best health of an organization is hard work and elusive, but hugely rewarding for customers, staff, professionals, and leaders. More about organizational health in future posts.

Me? or Populations?

By Caregiver, Clinician, ePatient
One of the challenges for the health care team – patient, caregivers, and professionals – is arriving at the patient’s personal goal of the moment and collaborating toward reaching that goal. I have found myself struggling to differentiate the likelihood of treatment success for a population versus the likely effect for me, my patient, or family member.  As my neurologist says to me, you are not the population. What works or happens for populations doesn’t necessarily happen or work for you. As a multiple sclerosis patient effects of treatment choices on populations is only one consideration got me. For example, I know that I will take no medication that makes me depressed or even less optimistic, no matter its proven clinical effects. My health team knows this.
Have you confronted such dilemmas in seeking best health?

Exercise – the instant magic lever

By Clinician, ePatient
Seems like a no brainer. Exercise, the instant magic lever for best health. Profoundly affects spiritual, mental, and physical health. One of the ways I discovered that I had multiple sclerosis was my inability to stay on a bicycle. I kept falling off when I stopped. Receiving the diagnosis was sobering at best! Sometimes very sad and depressing. Six months after my diagnosis I bought a Recumbent tricycle. I cried with relief that I could still get my favorite exercise. Can’t fall off a trike. Good for my soul, good for my heart, good for my quads. The direct connection between activity and recovery is so well documented.

How have we redesigned healthcare to include more activity? In that last 20 years patients walk right away after surgery and recover much more quickly. When I was an ICU manager we incorporated more activity into our standard operating procedure. We needed to use the families and caregivers to increase activity. We struggled with reluctant patients. But more activity for patients led to fewer complications, shorter stays, and better outcomes. Good for staff as well.  Have we taken this far enough? Do we build our organizational systems to maximize activity for staff?  I wonder if the magic levers of best health are obvious but fundamentally challenging-like the golden rule. Obvious and tough. 


What have you done to include physical activity in the routine of care giving?