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adherence Archives - Danny van Leeuwen Health Hats

Should I or Shouldn’t I? Managing Uncertainty

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher | No Comments

Have you ever remodeled your kitchen? So many decisions: Cabinet style, drawers, finish, hardware, not to mention the floor and appliances. There’s you, your partner, a contractor, a cabinet person, a floor person, the appliance merchant. Decision after decision – should we or shouldn’t we? And nobody’s gonna die or get injured – hopefully.  All while trying to keep living, cooking, dishes, lunches. My wife and I were so stressed.  Kitchen decisions pale next to health decisions, especially medical decisions. It’s not like, “do I prefer this drawer pull to that drawer pull?” “Would I rather have wood or tile floors?” There is so much more uncertainty in health care.

Why me, why now? Who says? How sure are they? What if I do? What if I don’t? Will I still be able to ….? Who pays? What will they think? How do I get there? What aren’t they telling me? Are they listening to me when I say I can’t or I won’t? I just can’t think right now! Oh, this sure sucks! Read More

Tales of Woe

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

From my memorable quotes pile:

Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?

Recently diagnosed patient:  I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office.  Now I’m home, how do I get my questions answered? Read More

Personal Health Goals

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

 

As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals.  What do I mean? OK, people who are well want to stay well.  Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. Read More

Transitions – What you don’t know can hurt you

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

Still exploring communication across transitions.  This week speaking with clinicians. First, with case managers in an acute, short-term rehabilitation center serving people with recent strokes, heart conditions, or surgeries needing less than a month of intensive therapy. The transition points between nurses shift to shift, between physicians and between case managers, between patients, families, and primary care clinicians at discharge worked the best because they’re well documented and standardized. Tools are in place for the sharing of information. Either the hand-offs between clinicians are routine or patient education notebooks are completed the same for every patient: not the same contents but the same workflow. Since it’s not acute care (short stays)  there  is more for hand-offs and to develop relationships with the patient and their caring network and time for patients and families to absorb the instructions. A considerable volume of paper is generated, resulting in lots to read and lots to fax (everything by fax!). Maybe too much to read.  Information coming in with patients was less complete than information going out with patients. Communication was better in general and more complete if a person received all their care within the same health system.  The biggest risk? Not receiving information about critical medications, such as blood thinners, steroids, and antidepressants.

Next, a community Primary Care clinic. Again, communication best when a person is discharged from a hospital within the same health system as their clinic. Then a nurse knows when someone is going to be discharged or has been discharged.  The nurse calls the patient at home and can let the doctor know that the patient has their prescriptions filled, knows what to do, or if anything needs attention. For the patient discharged from a hospital outside the health system, the clinic often doesn’t know the patient was even in the hospital and has to scramble to gather information so they can support the person. The transition from home to office works least well.  Someone calls the office needing an appointment or has a question or needs a prescription filled. The quality of screening, triage, and information gathering varies widely  The more the patient or caregiver takes charge, the better the communication with the call center the better the clinic visit goes. Transition communication with specialists outside the system seemed quite a challenge without a common EHR for communication. Read More

Deconstructing the Tower of Babel

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

I’ve spent the week immersed in this communication dilemma in healthcare.   As I’ve said before, I’m amazed that any communication occurs in healthcare – a constant unfolding Tower of Babel. Way too big of a topic. Let’s narrow (as the solar system is a narrowing of the universe) to communication across thresholds and boundaries. Some examples:

  1. Between clinicians (same profession, same agency, same department): such as nurse to nurse, doctor to doctor, shift to shift, day-to-day
  2. Between professionals (different profession, same agency, same department): such as nurse to doctor, therapist to doctor, counselor to nurse, paramedic to nurse)
  3. Between clinician and patient or family caregiver (within a hospital stay or clinic visit or community setting)
  4. Across departments or levels of care (inpatient, rehab, home, clinic, emergency, intensive and long-term care,  are all levels of care) within a hospital, clinic, or system: such as clinician to clinician, direct care or support staff to anyone
  5. Across levels of care (everything in 4. above plus jail, homeless shelter, community residence, supported living)  sometimes called discharge planning, care management, consultations, questions involving just about anyone in the center of care.

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Engaged with Sax

By | Advocate, Caregiver, ePatient, Family man, Musician | No Comments

Shopping for a new neurologist I had three screening questions:

  • What’s your response time to emails?
  • Do you use OpenNotes?
  • How would you work with my acupuncturist?

The first doc said, ‘I don’t use email, we don’t have a portal. What are OpenNotes? What do you mean you’re shopping for a neurologist? You either want me or you’re wasting my time.’ 

The second doc said, ‘If you email me, my nurse practitioner or I will get back to you within two business days. If you need us sooner, call my office.

Of course, we have OpenNotes. If I get something wrong, let me know. I know a lot about drugs and therapeutics and how they affect groups of people. But, I don’t know anything about you. My job is to learn more about you, and we’ll test different drugs and therapeutics and see what works for you. You are an experiment of one.

Oh, you use acupuncture? You’ll have to educate me. I don’t know much about that. I’m interested in anything that helps my patients. Seems like everything works for someone. And by the way, how’d I do? We could have some fun together.’
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Changing habits – for people and payers

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

I love my health team. They help me stay tuned up with my chronic challenges and they get me through unexpected crises. Still, I  see them way too often. 3-5 times a month and I’ve never been an inpatient. Professional contact is a drop in the pond of my health. The rest of the time (also known as my life) I set and track goals and habit changes. I have questions about my plans and treatments. I deal with changes in my life that affect my ability to do the work of habit change.  I network and I research. I worry and I celebrate. I have tools to help me that are largely disconnected from my health team. I track steps with my iPhone, my diet with MyFitnessPal, the support communities of MyTreatment and PatientsLikeMe.  I can communicate with some professionals via portals and can receive one way data via OpenNotes, also with some professionals. 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

Uncertainty and Comparative Effectiveness Research

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader | No Comments
Last week’s post  began a discussion of managing uncertainty in the health journey. That journey has many decision points. We can make some of those decisions ourselves and we can rely on others to make some decisions for us – family, friends, health care professionals. But isn’t health science-based?  Doesn’t research inform that science? Scientists knows that knowledge is never complete and that research can do no more than produce estimates of what we think is happening. Science, is in part, about odds and not facts. A particular medicine to be effective in specific circumstances for specific populations.  Unlike comparative shopping for a car or a toaster where I can go to Consumer Reports, health care is not so easy. There are so many medications to take for Multiple Sclerosis or high blood pressure.  Which should I take? This research is called comparative effectiveness research.

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Defining Patient and Family Engagement – Threads in the Fabric

By | Advocate, ePatient, Leader | No Comments
I take part in many forums that use the term patient engagement. Most often it means patient compliance with doctors’ orders. I struggle that there aren’t terms for clinician engagement, clinic engagement, hospital engagement, or vendor engagement. The health journey is a series of relationships, partnerships, with shifting foci of ability, skills, priorities. Tools, information, work flows and life flows could help and hinder those relationships.  It’s all on behalf of the person at the center of care, who is sometimes a patient.  I understand that everyone and every team and every organization tends to be self-centered, thinking first of themselves, their own survival. It’s human nature to want someone else to act differently. I know that much of the health industrial complex is really about illness, not health.  It’s usually an illness team not a health team. I also suspect that there’s a similar – minority – proportion of people who drive their own health as there are clinicians and provider organizations that are person centered. Collaboration among people who love each other is fraught, challenging, and continual effort. It gets harder from there. I also know that shared decision-making applies to decisions about treatment AND having persons at the center on Boards of Directors, on design teams, on evaluation teams. How do we then wrestle with the power imbalance of the relationships in the health journey? I don’t think I’m ready for a definition. There’s so much involved. I keep teasing out more threads in the fabric of the health journey.