A magic lever to best health – data and information

I work in a human services agency.  We support individuals with disabilities. We help people achieve their hopes and dreams in their communities. One of our strategic activities is to increase the information available to the persons we support, staff who support them, management who  supervise staff, and our funders. The information helps us all keep a pulse on how well we’re doing and improving and alerts us to areas of risk to individuals we support, staff, and the community. Providing meaningful information that can be acted upon has its challenges.  Meaningful information comes from trustworthy data that represents real life work and wellness. We subscribe to the Triple Aim of improving individual well-being and experience; improving the health of the community; and improving the value of the support and care systems we provide and use .
We find ourselves either drowning in data that doesn’t inform us nearly as well as we’d like or lacking information about areas that seem critically important. Imagine being in an ocean of data and not being able breathe. No learning, no wisdom, just soaking wet. We think that people are dying too young, that they could be healthier, happier, and more fulfilled in the community.  We think that support could be better coordinated and that people could be more drivers of their own health journey. We think that we spend too much money on expensive care and that we are often penny wise and pound foolish. How do we know? When will we know it’s getting better?
This begins a series of posts about our challenges with data, information, insight, and action. Possibly a drier topic than some of my recent posts, but it’s my idea of fun – it’s a magic lever to best health.

Mistakes – Finding your Groove Again

We make lots of mistakes improvising while playing music in my jazz combo – wrong notes, lose our place, no feel for the rhythm. No mistakes never happens. The music is good when the group communicates, recovers and finds the groove again. There is never no mistakes on the health journey.  Mistakes range from missed doses, added pounds, underwhelming exercise, and falls to unhappiness, crabbiness, and misjudged  function. Something hopeful doesn’t work, something makes you sicker.  It’s the human condition – mistakes. Expecting no mistakes is unreasonable. (I’m not talking about never events – wrong sided surgery, neglect, hubris, disrespect). Health can improve when mistakes are recognized and communicated. Lessons can be learned, something else tried.  We find the groove again.

Adjusting to new chronic illness

Adjusting to new chronic illness involves moving away from traditional medical/doctors/health care system to controlling controllable stress and recalibrating function.  “Eventually, you adjust to a new normal,” says Lisa Copen, founder of Rest Ministries, Inc.  Controllable stress takes many forms – toxic relationships, fear, anxiety, impatience, sleeplessness…. Managing those stresses creates space and reserves to manage uncontrollable stress – grief, new meds, less abilities, etc. Getting help managing toxic relationships has out-sized impact.  Toxic relationships wear you down, drop by drop. Counseling can help here. Meditation and yoga pair well with impatience and anxiety.  Have fun: when I got my multiple sclerosis diagnosis I had to redouble my efforts to have fun – more clearly defining what having fun meant to me and including fun as part of everyday life at home and at work. Spending time with my honey and my family, playing music, reading, making a difference, mentoring. Recalibrating function – adjusting to the new you: Physical or occupational therapy can help to manage changing abilities to carry out activities of daily living (meals, elimination, movement, dressing, chores). Community services can help with transportation and family support, among other things. We often expect that the traditional medical/health care system should help with stress and function. That’s not their core business, they’re often not good at it. Those with new chronic illness need to look elsewhere and add to their health team. Right now, insurance doesn’t pay well or doesn’t pay at all for controlling controllable stress or recalibrating function. Maybe that will change as incentives move from fee for service to capitation (paying separately for each service to paying a set amount per person).

Satisfaction, Smatisfaction – any good?

More and more often I’m receiving satisfaction surveys from providers of health care  Interesting concept: satisfaction. Satisfaction with what? Satisfaction with service, respect, knowledge, empathy, partnership, noise? I expect that members of my team will listen to me, help me listen to them, not waste my time, be nice to me, tell me how much stuff costs in advance of charging me, tell me the likelihood that whatever they’re recommending will work, tell me what might happen if I don’t follow their recommendations, tell me how I can reach them when I need help, tell me what should trigger reaching out to them. As a nurse, a patient and a caregiver I wonder if surveys ask what’s important to me (mostly they’re not) and I wonder if the results are actionable (If results are lower than hoped, that something can be done to make the results better.  If they are better than expected, that someone can figure out why, so it can be done more often).

Continue reading

Take a break – now

Today I’m bone tired. Tired of grief, tired of having MS. Interesting how physical health and mental health go hand in hand. Medical challenges weaken our reserves, at the very least make us crabby fearful, anxious – tired. Medical challenges drain our ability to coördinate, think critically, advocate for ourselves, have perspective, when we most need these skills. Mental health challenges can make it harder to identify – even mask – and work with medical issues. How do we rejuvenate from being run down from physical or mental ill-health? How do you take a break-get some rest? I find that small things help – wear the brightest bow tie when I feel the worst, have a piece of chocolate, cuddle with my honey, take 5 minutes to bitch and moan, drink lots of water, take a power nap, listen to Paul Simon’s Graceland, enjoy smaller meals, laugh, cry, or sigh, eliminate manageable stress, exercise, get a massage. What works for you?