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research | Danny van Leeuwen Health Hats - Part 3

Clinical Practice Guidelines – Oh My Aching Brain

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher | One Comment

Last time I saw my Primary Care Provider I asked if I needed to keep taking my Crestor, a drug to reduce cholesterol. She pulled out the clinical practice guideline for the treatment of blood cholesterol released by the American College of Cardiology and the American Heart Association. Every couple of years I ask her the same question. Do I really need this? Does it have long-term side effects I should worry about? I’m 63 years old, when can I stop because I’m too old? With insurance it costs me $300 a year out-of-pocket.

How many clinical practice guidelines are there? I could find no specific count – thousands I’m sure. The Agency for Healthcare Research and Quality (AHRQ)’s National Guideline Clearinghouse lists 1975 guidelines.

Who writes guidelines? What is the evidence to support guidelines? Which guidelines apply to me? How often do guideline writers  rewrite them when new evidence comes to light? How long does it take for people at the center to become aware of guidelines and use them? Read More

Experiences, experiments, reflection, action

By | Advocate, Caregiver, Consumer, ePatient, Leader, Researcher | No Comments

This week people told me stories about a moment in their health journey – Symptoms, people, relationships, procedures, thresholds, feelings.  Completely fascinating, inspiring, and gut wrenching windows into life’s challenges and tragedies. I heard,  I’m worried, the surgery worked, I can’t find a clinician who listens to me, my condition recurred – worse, my family’s supportive and grieving, how will I manage my job, I fell, my mother went into assisted living  (all from different people). Other people told me about work they’re doing – research, businesses, experiments.  I heard, let me tell you about the study I’ve been doing about multiple sclerosis, I’ve learned a lot about the stages that a person goes through as they gather information about chronic illness, I’m helping people succeed in their startup, I’ve found 5 people who have had the same success managing their chronic fatigue.  I read studies this week about reducing opioid use,  predicting resource use in chronic illness,  and improving the ability of individuals and clinicians to communicate and set mutual health goals.

Actually, this is a normal week. Experiences, experiments, reflection, action. All tie together. Each necessary, none sufficient.

Not collected? Not studied.

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist, Researcher | 2 Comments

What do people consider to be clinical data, when they’re not wearing the hat of clinician, academic, researcher, insurer or EHR vendor? We can all agree that pulse, weight, diagnosis, procedure, medication are all clinical data. But what about data that answers questions like:

  • What does feeling worse (or better) look like?
  • What works for me when I’m in pain (or scared)?
  • Where will I sleep tonight?
  • Are my kids safe? Am I?
  • Am I treated with respect?
  • Do I understand what doctors and nurses say to me?
  • Where do I go when I have a question or I forget what I’ve been told?
  • How do I get food from the grocery store?
  • How much can I afford out-of-pocket for my medicine?
  • What are the most important things in my life, for my future, for my health?
  • Can I live with this amount of pain or discomfort or indignity?
  • Do I have access to a computer or a phone?

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Learning from What Doesn’t Work

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

Notice how young kids learn to walk. Try, fail, try again, over and over until they get it right. On the other end of the continuum are politicians accusing each other of changing their minds. Dragging up statements from years ago to slap each other with a change in direction. When did they lose their ability to be proud of learning? When did voters start expecting politicians not to learn, recognize failure, and try something else? I don’t understand this. I once said I would never get married, I would never have kids. Now I’ve been married for 40 years and have a fabulous family. I learned much since my ignorant adolescent days. Living successfully with chronic illness requires trying, failing, getting up again and trying something else. Diagnosis depends on testing, trying a treatment, measuring its success or failure, and repeating the cycle until something works to decrease suffering. The tragedies are when trying never leads to a better life, or the team stops trying. Research faces a similar dilemma. Supposedly research tests hypotheses. One treatment or approach works better than another. Yet peer-reviewed journals publish articles that prove the hypothesis and doesn’t publish articles that disproves the hypothesis. What is this bias? I know that I have learned more from my mistakes than my successes. What if I couldn’t recognize a mistake or a failure and kept sticking with it? Thank God I can shift and try something else. I’m more skeptical when th change is degeneration of values. Less empathy, more fear, less generosity, more cruelty. I could appreciate more empathy, less fear, more generosity, less cruelty. Let’s honor rapid discovery of and learning from mistakes and courage to try something else. Let’s learn from those kids.

Last Post, New Year

By | Caregiver, Clinician, Consumer, ePatient, Family man, Leader, Musician | 2 Comments

Last post of 2015. Reviewing the year in 51 blog posts, we discussed:

  • Death and Dying
  • Give Me My Dam Data
  • Values
  • Leadership
  • Work/Life balance
  • Grace
  • Ignorance, Uncertainty, Research
  • Music
  • Caregivers
  • Experience of People at the Center
  • And more

I’m looking forward to the adventure of the new year: Maintaining my health, contributing to the experience of we people at the center, playing the blues, watching my grandkids grow, hearing from you.

From Mark Twain:

  • All you need in this life is ignorance and confidence, and then success is sure.

Patient Reported Outcome Measures (PROM)

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

When I first heard about Patient Reported Outcome Measures (PROM) I thought they were talking about pulse, blood pressure, weight, pain, anxiety. I didn’t start exploring further until 2012 when I was on the federal government’s Blue Button Initiative – clicking a button in your electronic medical record to download information from that record into human or machine readable form. I was on the Content Task Force. I cared about what information was to be downloaded. Based on comments I had received from you readers, I tried to get the Task Force to add what works and what doesn’t, when I’m scared or in pain. No luck, as if I was speaking Klingon. That started my exploration of PROM in England’s National Health Service. The National Quality Forum published a report in January 2013 about PROM. PROM’s have been developed for depression, pain, sleep, joint replacement. You can see an example on a Dartmouth web site called https://howsyourhealth.org/ where you can do a checkup of your general health and health risks.

PROM can be used for an individual or for populations, just like any research.  For people, the challenges is having the chat with your primary care provider. Will they have time? Will they engage with you? For populations, the challenge is the methodology.  Will everyone do it the same? Is it filled out only by people who have the knowledge, language, motivation to enter data? What about people who need their parent, neighbor, caregiver, child to fill it out? This is an exciting puzzle. I need to learn more.

The jumble of research

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Researcher | No Comments
Next week, I’ll be attending PCORI’s (Patient Centered Outcomes Research Institute) Communication and Dissemination Advisory Team meeting in DC. Research is ink on paper until people at the center and clinicians receive the results in an understandable and useable form: communication, translation, dissemination. I speak with many of you  about what matters to you. I hear you ask:
  • How does research apply to me? For example, a study reports that one treatment is likely to result in improvement 40% of the time. This treatment  results in 10% fewer people dying within 5 years than that treatment. 20% of people taking drug A are likely to have some nasty side effect.  If research is about groups of people (populations), how do I know whether to take one path or another, based on research?
  • Health care seems to be a Tower of Babel – communication is tough in the best of circumstances. How can we best communicate complex information from clinicians to people at center, from people at center to clinicians, or between specialists?
  • How do my personal values, religion, or culture affect research results?
  • The person I care for has changing ability to understand (getting older, more confused, etc.). How do I best share research results?
  • What about research that isn’t published, doesn’t prove the hypothesis? It all seems so uncertain.  How is that communicated.
  • What about word of mouth, popular media, or social media?  How do I know what to believe?
  • If I am one of the people who is a subject in research, how do I protect my privacy?
I’m hoping that we begin to assemble a framework for understanding communication and dissemination of research. Right now it seems like such a jumble.

Embracing your friend, ignorance

By | Caregiver, Clinician, ePatient, Family man, Leader | No Comments
Pondering ignorance this week. Not so much the ignorance we see with politicians (although that can be quite awesome on a massive scale), but the not knowing. Discovering a realm of not knowing you didn’t know existed. I’ve seen varied reactions: mild curiosity, questioning, enthusiastic digging and pulling, fear and whining. I participated in a Patient Shark Tank yesterday. A Shark Tank is a forum where aspiring entrepreneurs make business presentations to a panel of “shark” investors (or in my case, patients). I saw a combination of not knowing what they didn’t know and enthusiastic digging and pulling new information through research, interviews, and testing. These aspirants welcomed someone shining a light on something they didn’t know they didn’t know. This week members of my team asked many questions when finding something they didn’t know – clarifying, defining, path finding questions. Fear is me when I got the diagnosis of MS and was told I needed to walk with a cane.  I whined to my son, I’m 50 years old and I need a cane. Mind shut down, paralyzed, dependent. Oh get over it pop, it’s just another accessory. Ignorance is your friend – possibilities and adventure ahead.

Personal Experiments to Reduce Uncertainty and Manage Health

By | Caregiver, ePatient | No Comments
Health consists of one experiment after another.  What works? One of my challenges is neuropathy. People with diabetes and multiple sclerosis commonly have neuropathy. There’s sensory and motor neuropathy. Sensory Neuropathy causes tingling and numbness, pins and needles and hypersensitivity, increased pain or the loss of ability to feel pain, loss of ability to detect changes in heat and cold, loss of co-ordination and proprioception (knowing where your body is. I bump into door jambs), and burning, stabbing, lancing, boring or shooting pains – which may be worse at night. Motor Neuropathy causes muscle weakness – causing unsteadiness and difficulty performing small movements such as buttoning the shirt, muscle wasting, or muscle twitching and cramps.  I have symptoms of both. It’s seriously annoying.

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Managing Uncertainty – A Magic Lever for Best Health

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist | 4 Comments

People at the center of care (individuals, caregivers, family networks, and healthcare professionals) crave knowledge to make sense of and make decisions about their health journey. We need information we can understand that’s relevant to us and our families. Unfortunately, it can seem dry like a desert or like drinking water from a firehose, often dirty water.  It ranges from no useful information to a flood from friends, acquaintances, the media and health professionals. It’s bewildering. My first neurologist said, I know about medicines and procedures for populations. You are an individual. I need to learn about you, what’s important to you, test stuff to see what works, so we can decide what to do next. I say, what about acupuncture, massage, and diet.  He says, I am not an expert in other treatments, but I can learn. Whoa! Now here’s a guy I can work with!!! What I learned was that there is very little science that is absolutely always true – We need to breathe clean air, drink plenty of clean water and eliminate regularly. Those are certain. Otherwise there’s uncertainty in almost everything. How do we understand, communicate, and manage uncertainty? Managing uncertainty is a magic lever for best health. Let’s keep exploring this lever.