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evidence | Danny van Leeuwen Health Hats - Part 4

So Many Decisions

By | Caregiver, Consumer, ePatient | No Comments
So many decisions to make in the journey toward best health. Should I take this medicine, should I have that surgery, should I stay home from work, should I worry, should I use a cane, should I tell my employer or my spouse, should I  eat this, should I buy that insurance, should I see both doctors on the same day, and on and on and on. Clinicians and e-patients approach decisions so differently. For clinicians its studies published in academic journals that show an increased likelihood that x works better than y for a specfiic population. It’s habit and common community practice. For e-patients it’s often spur of the moment decisions, trusting someone. It’s about me.

Yesterday, I attended the Board meeting of PCORI (Patient-Centered Outcomes Research Institute).  I wrote about PCORI in a previous post. PCORI could transform some research about health. See the notes of the meeting  here. A group of e-Patients made three recommendations to the PCORI Board in the public comment period:
The PCORI Board addressed the challenges of being patient-centered several times in their deliberations. They asked, what is a patient? Is it someone who is sick or caring for someone sick? What about the well – the worried well, or those preventing sickness?  Should patient engagement in research mean that patients should speak to each other in patient advisory groups or should they foster melding of the silos of patients, researchers , advocates, vendors, and providers? How should they foster and hear advice from patients? What projects should they prioritize that are most likely to impact patient engagement and experience?
So many decisions to make in the journey to best health.

Leadership of My Health Team

By | Consumer, ePatient, Leader | No Comments
I was reading a white paperAn Accountability Architecture for Success, by Wellesley Partners, comparing military success to health care success: Working together as part of a team, applying their specialized knowledge toward a common goal and Define success based on data-driven, results-based metrics; put someone in charge; and hold people accountable. Does this apply to my health care? I have a team, we periodically set common goals. We try to be data driven, we track certain metrics. But who’s in charge and how do we hold each other accountable? Ideally, I, the patient, am in charge. But in reality its a moving target. When we’re kids our parents are in charge, this shifts as we become tweens, and shifts again when and if our mental acuity deteriorates accidentally or progressively. When does the professional take charge? Do we allow this because that’s the way it is or does it happen because the decisions of the moment seem beyond our abilities or energy level? Is the team clear who makes the decisions? Shared decision-making still means that a decision is made. Can I effectively progress in my health journey when I’m not clear who’s in charge and how we hold ourselves accountable? With my team I make the decisions. If I’m the leader and making decisions, then I must be accountable. I’m accountable to follow the path we set. Upstream, professionals and the offices and institutions they work in are accountable to share data with me and help me interpret the data to set the path. I’m accountable to expect that data, seek other data, and participate in turning the data into information that helps us set common goals. The rest of my team is accountable to help me meet the goals. It feels awkward for me, a knowledgeable, empowered, and energized patient, to talk with my team about decision-making and accountability. We have lots of work to do.

Care Coordination

By | Advocate, Caregiver, ePatient, Leader | No Comments
According to the September 2012 Institute of Medicine (IOM) report, Communicating with Patients on Health Care Evidence, 97 percent of those surveyed with chronic conditions agreed that their care ought to be coordinated. Yet, only 54 percent said that their care was currently coordinated. If asked is my care for MS coordinated, at first blush I’d say yes. But then I wonder how do I recognize coordinated care? Would it be that all my providers talk to each other, work off the same data set? I realize that I am the coordinator. I ask for reports from one be sent to the others. I keep each informed about what the others are recommending and prescribing. I have a great team. I am completely satisfied with their expertise, the relationships and communication with me, and my health outcomes.  My primary care doc takes her role very seriously. They all discuss options with me and seek out my personal goals and desires. They all have EMRs. Yet I am still the coordinator.  Without my active coordination my care would be fragmented and based on incomplete data sets. I don’t need more than that, because it works, and I am very stable and cognitively very present and engaged.  What if I weren’t? How would my care be coordinated?  Would my wife or sons take it over, would my primary care doc step up? Yes, they would.  Again, I’m very fortunate. I don’t see that coordinated care is the path of least resistance nationwide. It should be. How can it be?

Magic Lever – Adherence to Health Plan

By | Caregiver, Clinician, Consumer, ePatient, Leader | 3 Comments
Unfortunately some providers call adherence to a health plan – compliance. This unhelpful label implies singular focus on the patient, as in “they aren’t compliant with taking their meds”.

The ability to develop and adhere to a health plan is probably the most complex magic lever of best health. Developing and adhering to a health plan involves studying population health; evidence-based best practice; collaborative relationships, behaviors, language, and alignment of the health team; standardized work flows with on-the-spot improvisation; electronic and non-electronic tools; leadership; and management of cultural and social habits and challenges. Setting up systems to make adherence more likely is challenging and labor intensive. The effort has to be worth the outcome.


Population health analytics – studies to predict those groups of people for whom adherence planning would yield the greatest benefit to health, experience, and cost. Evidence-based practice – adherence planning should be based on evidence – knowing it’s likely to do what the health team expects. Collaborative relationships, behaviors, language, and alignment of the health team – the intricate choreography with stars and cast who can speak to, understand each other, and work together for a common purpose. Standardized work flows with on-the-spot improvisation – adherence planning is largely production work repeated across groups of people. Yet each of us is slightly different and unique. Teams respond as people and circumstances change. Electronic and non-electronic tools – Adherence is not a point in time, but occurs and adjusts over time. Well meaning and determined people need help. Leadership – Creating and maintaining adherence friendly systems needs inspired leaders. Dance without a director is just a rave. Management of cultural and social habits and challenges – A person who doesn’t get a lunch break can’t take a mid day medication with food. A single parent with several children depending on public transportation can find it difficult to make a physical therapy appointment three times a week. Sensitivity to such challenges and public policy advocacy can increase the likelihood of adherence.
In short, adherence is serious work for everyone. It is not compliance.

Magic lever – changing habits

By | Caregiver, Clinician, Consumer, ePatient | 4 Comments
One of the magic levers impacting best health is automatically using widely accepted, well tested practices (evidence-based practice). For example hand washing. Seems like a no brainer – washing hands between patients for professionals, before caring for your loved one, after going to the bathroom for everyone. Another is limiting antibiotic use to treat viruses. Also preventing or reversing obesity. I’m fascinated how hard it is for professionals to change practice informed by widely accepted research or even common sense. Is it similar to maintaining good life habits? I suspect that inertia plays a major role. It’s hard to change gears in a busy productive life. Heck, its hard to change gears in an unproductive life. How do we get the stars in alignment to do the right thing when we definitely know what the right thing is? How do you effect change in your professional and personal life? What are key factors that others can replicate? We spend so much money and human capital on trying to change behavior – consultants, training, how-to-manuals. What works? Being able to change habits is a superpower.