informed decision-making Archives - Danny van Leeuwen Health Hats

It’s not so simple – making treatment choices

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

We (patients and clinicians) need all the help we can get making informed health care decisions. We need the right information to the right person, in the right format, through the right channel, at the right time in our life flow and workflow – The five rights. Let’s take managing acute pain as an example. Clearly, we need to make some decisions together. I (the patient) am in pain for whatever reason – hurt my back, migraines, colitis, sickle cell, a million reasons. I (the clinician) need to help my patient manage that pain with the least long-term risk possible, e.g. relief with maximum function without addiction, constipation, confusion, whatever. This pain could be new – never had it before, or familiar – chronic (we have experience with what works and what doesn’t). Clinical decision support can help us to structure and inform a routine to make choices based on research and clinical and life experience. What has worked for groups of people (those with acute back pain, migraines, colitis, sickle cell) and what has worked for the individual (me or my patient)? We can welcome this decision support when symptoms first occur, when the patient and clinician first communicate, when they first meet about the symptoms, or as we try treatments until the pain goes away or is manageable – anytime from first pain to living with pain to no pain. Read More


By | Caregiver, Clinician, ePatient, Family man | No Comments

I trust my primary care doc.  I trust my neurologist. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me.  That certainly doesn’t mean that we don’t question almost everything each other says. Trust is not blind faith. Trust is NOT no second opinions. Trust is for when I’m in a crisis and I can’t think clearly, I will listen to my immediate family and my two lead docs (in that order) and I’m likely to do what they recommend… unless I’m unsure. Trust is for when I need to make a decision but can’t or don’t want to. And these are all people’s opinions about what I should do with my life. I know I should lose weight. People I trust say I should lose weight.  It takes a certain alignment of the stars for me to lose weight. I lost 30 pounds eight years ago when the stars were in alignment. They were in alignment again three weeks ago. I’ve started to lose the same 30 pounds again.

I’ve questioned my primary care doc about taking cholesterol-lowering meds.  She wants me to take them. I’m not so sure. The evidence appears pretty clear. I’ve been taking them for nine years because I trust her. Now with Medicare, they’re going to cost me more. It has me thinking again.  I still trust her.  I’ve stopped taking them.

I trusted my doctors for twenty-five years as they worked me up, over and over, for cardiac issues.  Now I know I have multiple sclerosis, not heart disease. I’m a trusting fellow until I’m not.

A friend of mine had breast cancer. She asked her doctors, “Should I take chemo?” They all said yes. She trusted that they wanted the best for her, but wondered where their trust in that advice came from? Was their research current, reliable, and apply to her as an individual? She did the chemo.

Webster says, Trust = you can rely on the integrity, strength, or ability of a person or thing. Trust is respect + communication + context. Making choices about your health in a bed of trust is hard enough. Making choices in the swamp of distrust can be crazy making.

As a person, I try to build trust – in relationships. It starts with being trustworthy. I feel better in that bed of trust. Still, trust in myself, ourselves, is key. Ultimately, it’s our lives.  We face the consequences of our decisions. I’m greatly relieved that I trust I can adjust and make a different choice if the one I made didn’t work out. Trust.

Related posts

Decisions, Decisions, Decisions

Adjusting Your Personal Health Plan? Right…

Trust and choice: magic levers

Trust- Another Magic Lever

Magic Lever – Trust



By | Clinician, ePatient | No Comments


Imagine sitting down with your patient and care partner to find them prepared to choose a treatment that works for them.

Imagine that they know their life priorities and their life challenges and can and will communicate them to you.

Imagine that you have a key to the Tower of Babel and can communicate with anyone.

Imagine that you have the latest research at your fingertips so you can have informed conversations with your patient.

Imagine that they understand that recommended treatments might work. It’s an experiment based on pretty good research, your clinical experience and training, and your sensitivity to them.

Imagine that you all accept the uncertainty of evidence and of life.

Imagine that they trust you.

Imagine that you have all the time you need together with no distractions for you or them.

Imagine that your practice runs so efficiently and effectively that most of your face time with patients is spent in relationship building, exam, and problem-solving.

Imagine that by spending a few minutes together, you can to input assessment and exam and their data seamlessly into their electronic medical record (EHR).

Imagine that they can and do submit corrections to the data in their records and that those corrections can be reviewed and entered quickly.

Imagine that it’s easy to track in the EHR how well the actions taken to treat actually worked over time using your entries and their entries.

Imagine that the recommendations chosen automatically populate a personal care plan for your patient along with all the other choices you made together about treatment and self-care.

Imagine that they will follow the plan, track progress, and let you know when they don’t and why.

Imagine that the up-to-date treatment plan and tracker is shareable in real time with anyone the patient chooses using any EHR or health app.

Patient and Care Partner

Imagine that you have all the information you need to make decisions about your medical treatment including the cost of those choices.

Imagine that the information can be shared with your family, friends, and advisors so you are prepared to advocate for yourself and make decisions with your doctor.

Imagine that you can talk about your life’s goals and challenges and that your doctor can hear you.

Imagine that all health professionals realize that they are guests in your life.

Imagine that you have time to talk and share with your doctor without distractions.

Imagine that your doctor trusts you to be the expert about you.

Imagine that your doctor helps you understand research and how it applies to you.

Imagine that you have a care partner who goes to doctor visits with you, listens and advocates for you.

Imagine that your health and wellness choices and plans can be found in your EHR.

Imagine that you can correct and update your health data and track your progress in your EHR.

Imagine you have one up-to-date EHR for all settings and providers and you control who has access to it.

Imagine that you have access to medical advice and can get questions answered when you need it, in a manner that you can digest.

Imagine that if you try something and it doesn’t work, you can adjust quickly with your health team to try something else.



Photo by Bonnie Kittle on Unsplash

Related Posts


Learning from What Doesn’t Work

Once Again – Stranger in a Strange Land

Queen for a Day

#WordsDoMatter for Action

By | Advocate, Caregiver, ePatient | No Comments

Language has a magical influence on the lives we lead, with an impact on our thoughts, emotions, and/or actions. The words we use are one of the most potent ingredients in the science of language. Words have the power to heal, guide and motivate. They can confuse, mislead, and even hurt us. The intent of a spoken word can often be misinterpreted leading to an unintended consequence. The majority of our words are a result of habit and convenience. If we follow the ripple effect of our words to understand the emotions and/or behaviors they might potentially trigger, would it force us to pause, think and perhaps communicate differently? See Sarah Krug’s post on the Society of Participatory Medicine blog, The Power of Words in Healthcare: A Patient-Friendly Lexicon. Top 10 List #WordsDoMatter Project.

Sarah offers 10 words she vows not to use with patients and their families in 2018!

  1. Patient Engagement
  2. Patient Journey
  3. Patient Centric
  4. Co-Create
  5. Compliance/Adherence
  6. Survivor
  7. Fight
  8. Caregiver
  9. Shared Decision-Making
  10. Negative

Language does have magical influence. I appreciate Sarah’s post. Let’s pause and break this down. Some of these ten words are names, labels, such as survivor and caregiver. While these aren’t slurs nor do they denote disrespect, they aren’t in and of themselves that descriptive without the story behind them. A person is always more than a label. Actually, I don’t like other people to label me. I’ve been labeled heterosexual, white, retired, disabled, male nurse, patient, caregiver, etc.  Some labels I own, some labels feel limiting to me.  When I’m with other people who share a label I may either feel solidarity or feel my uniqueness. Usually, I spend little time on the label. I’d rather hear stories, share experiences, what worked and what didn’t with the people with whom I’m sharing a label. When people write and use labels about me, I can’t help but think of exceptions. I am not the typical caregiver, male nurse, retired person.  I guess.

Compliance, adherence, patient-centric, and shared decision-making have a power component. Who’s up, who’s down? As a patient activist, I would rather use Informed Decision-making or Health Care Choices than Shared Decision-making. But depending on the setting and my goals in the interaction,  I may point out the implications of the word choices or I may not. In any communication, I can choose to focus on the words used and do some education. I could listen and try to understand what the person means by the words being used. If I feel the words are offensive, I could speak up, be silent, or leave the room. Up to me.

Words have history. Patient engagement was once a revolutionary new concept. Now it’s lost its meaning or it could mean so many different things. I’d rather engage in my care, negotiate engagement, or find a common meaning with the people I’m in the room with. I think there could be other words used. However, those new words will inevitably become diluted as well.  I use journey a lot. I get so frustrated with the episodic view of health care: the visit, the hospital stay, the diagnosis. I prefer the journey, the adventure, the extended time, people, settings and the idea of a destination or goal. But I don’t care what words other people use, as long as it’s not based on diagnosis and episode.  I’ll keep using journey.

Words are important.  Especially if they’re offensive or as dilute as water. But they are also opportunities for sharing, learning, advocacy. I feel very strongly that refining words used is only step one in activism. More important to me is best health and quality of life; equity; personal, spiritual, food, and financial safety; respect; and community. And what do these words even mean? We listen, talk, and do. Hopefully, communication leads to action – action that we desire. The patient-friendly lexicon will always be dynamic.  Participatory Medicine is part of today’s lexicon.  I’d welcome the day when it gets added to the list as outdated and dilute.

Related Posts

Guests on People’s Health Journeys

I am Not My Condition

CEO of My Health Team

Who’s your health co-pilot?


CMS Quality Measures for People

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher | 6 Comments

Payment for medical services is shifting from paying for volume (more visits, tests, visits, days = more money) to paying for value (quality of care). Makes sense. But what does value and quality of care mean? It means that physicians get paid an incentive (more money) for certain results (outcomes, process, actions). An example is readmission rates. If a physician’s patients are readmitted to a hospital after discharge more than most physicians, they don’t get the extra payment. There are roughly 1,000 of such quality measures. These quality measures are very important to us – people at the center of care (patients, caregivers, parents, direct care clinicians and staff) – because measurement strongly influences people and organizations who get paid for medical services. Following the money doesn’t necessarily mean better medical care, better health for us, better relationships among our healthcare teams, or better work life for our health professional partners.

I was nominated to sit on a CMS (Center for Medicare and Medicaid Services)/Battelle Quality Measurement Development Technical Advisory Panel (TEP). The TEP had its first meeting in Baltimore last week. I was one of 19 Panel members (and one of two with expertise in all four of the selection criteria -Consumer Perspective, Clinical Content, Performance Measurement, Coding and Informatics).  The TEP seeks to improve the process of developing measures. It isn’t trying to develop measures. The good news is that the TEP gelled as a team and the CMS/Battelle leaders seem open to, if not eager for, actionable advice. I am honored to have been asked to sit at this table.

As a Patient Activist and a change catalyst, I appreciate the formidable forces of inertia and the current business realities of the medical care industrial complex. What can little Danny van Leeuwen hope to accomplish? My goal in accepting this appointment is to find one lever that can move the Value-Based Measurement battleship three degrees toward value to people at the center of care. My superpower is to accept what is and go from there. After listening to my esteemed TEP colleagues, my perception of what is is:

  1. Measures serve to evaluate the performance of individual practitioners (not measure whether patients attain optimal health or how the team is functioning),
  2. Inertia is heading to further measure specificity by specialty and diagnosis (not toward the patient with more non-medical than medical determinants of health who is more than a sum of their diagnoses),
  3. Data for measurement exists primarily in claims, diagnostic systems, and Electronic Medical Records (much less patient-generated data and experience/perceptions of people at the center of care),
  4. Physicians bristle at the idea of being held accountable for anything they deem out of their control (rather than what can I do to contribute to improving whatever?),
  5. People at the center of care, insurers, and policymakers all feel ill at ease with uncertainty,
  6. Few, if any, incentives exist for data vendors to integrate their data (So patients, caregivers, and parents using the most health care dollars provide the bulk of communication at transitions in care, if they can do it at all),
  7. Testing measures in real-life seems to be an almost insurmountable challenge (so the link between measures and what they seek to measure and the link between measurement and value to patients is tenuous),
  8. Direct care clinicians are stressed and burning out – the proportion of time they spent documenting rather than caring is growing while they feel pressure to increase productivity (rather than technology helping to reverse those trends),

Jeesh. Houston, we have a problem. Read More

Byzantine Access to My Health Data Serves Whom? Not Me

By | Advocate, Caregiver, ePatient | One Comment

I have secondary progressive multiple sclerosis.  Today, I have a primary care physician in one health system, and four specialists in three other health systems (each has unique ownership, medical record, and patient portal). I use two retail pharmacies, one specialty pharmacy, and three lab services.  I also see an acupuncturist, chiropractor, physical therapist, and massage therapist. I use two durable medical equipment companies. These services almost exclusively communicate through me (or fax – my grandsons don’t know what a fax is). My personal team is my wife, two adult sons, their spouses, and a sister. I have to give them my sign in and password to access the portals. I use a spreadsheet, and three apps to track stuff. I don’t have the patience for the work of building my personal health record in an app. I have no idea what happens to my data in PatientsLikeMe and other businesses. I’d like to give authorization when I think it’s right and track who’s using what, but I can’t. I’m doing OK, thanks for asking. Read More

I Wasn’t Born with a Tattoo, Telling Me How Long I Have to Live

By | Advocate, Caregiver, Clinician, ePatient, Family man, Leader | 9 Comments

10p New Year’s night 2002: Mike called me. I’m numb on my right side. My heart screamed. My boy had a stage 4 melano2012-05-17-mike-porchma removed from his neck a year ago followed by lymph node removal and a course of Interferon. Go to the Emergency Department. The next day a metastasized brain tumor the size of a grape was removed. Soon he had a lung tumor the size of an orange removed. He called them Terrence (the brain tumor) and Caesar (the lung tumor). Once sufficiently recovered from the surgeries, he began treatment at the cancer center close to his college home. A team of me, my wife and the parents of his girlfriend (who lived near their college home) alternated accompanying Mike on his visits to the cancer center. Mike never felt that he had the information he needed.  They wouldn’t talk prognosis: Am I going to die?  They didn’t explain uncertainty: What does 5% chance of anything mean? I’m 26! They seemed to speak to us more than him. After a particularly frustrating session with the oncologist, I asked him if I could arranged a consultation in the cancer center near us. He agreed. I did. What a difference. Mike immediately bonded with the radiation oncologist. Let me speak with Mike alone. After an hour, Mike came out. I’m probably going to die, but there’s stuff we can try. Oh well, I wasn’t born with a tattoo on my ass telling me how long I had to live. He died November 18th, 2002. Read More

Subscribe to Health Hats Blog

Please subscribe to Health Hats Blog. Arrives directly to your inbox


For Subscribing!