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multiple sclerosis | Danny van Leeuwen Health Hats - Part 7

Thanks Giving

By Family man No Comments
Thanksgiving is my family’s signature holiday. We like to appreciate. This year I appreciate my family – soothes my soul, entertains me, keeps me honest. I appreciate my layoff – affirming my passion for the e-Patient, opening new vistas and sandboxes for me to play in. I appreciate my music – soothes my soul, humbles me, reminds my that my Swiss Cheese (MS) brain can still learn. I appreciate my growing network-inspires me and encourages me. Oh my, I hear a theme – soothing the soul, learning, humility, inspiration, fun. For this I give thanks.

Give Me My Damn Data

By Caregiver, ePatient, Consumer 3 Comments
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.

Consumer Engagement – Respect the Horse

By Advocate, ePatient, Leader, Consumer One Comment
I went to the Duke Wireless Health Conference (See #dukewhc for the tweet thread) in North Carolina this week invited by my friend Dr. Gopal Chopra of Ping MD fame. How to engage consumers more in their health care? As a patient, I bristled at the thought that I wasn’t  engaged in my care. They don’t know me? I understand that I’m not representative of all consumers – no one is. We are all health care consumers, we are all on a health journey. There is much variation in those journeys. I also understand that other members of my health team – my primary care doc, my wife, my kids, my mother have opinions or perspectives about how engaged I am in my healthcare. I gained weight for several years. They suggested I lose weight. It wasn’t until this past year that I engaged in losing weight and lost 35 pounds. Two points: First I’m always on my health journey. The journey just happens. Second, my ability to focus on various aspects of that journey and engage in trying to change that journey ebbs and flows. Sometimes I focus on some of the seriously annoying aspects of MS: vision, mobility, balance. Sometimes, I need a rest from it all. can’t focus at all. I appreciate being accepted by my health team as I am. I appreciate that they care about me and listen to me actively. I appreciate their support when I’m ready to tackle a particular challenge, like weight loss. Ah, there it is – a team present when ready. Hold that thought.

We have a primal conundrum – the tension between population health and individual health. The community, the industry wants the population healthier. Makes sense: it’s the right thing, it costs the community less overall, and it feeds the economy. The tension comes when individuals feel that the community knows best – how do we get the horse to drink? Do we respect the horse? How do we align these forces? Treatments, products and tools are designed for populations (its a matter of scale), but used by individuals. My takeaways from the conference are: bring products and tools to where people are (Screening kiosks in Walmarts by SoloHealth); reconnect families to reunite health teams (Family Health Networks); allow more time for caring providers to engage with their patients; engagement is not about technology – technology serves the engagement and the relationships.

Me? or Populations?

By Caregiver, ePatient, Clinician One Comment
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 ePatient, Clinician No Comments
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?