evidence | Danny van Leeuwen Health Hats - Part 3

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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Talking about Uncertainty

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader One Comment
How do we people at the center of care speak about uncertainty in health among ourselves? How does uncertainty even come up in thought or conversation? I feel [fill in the blank]. Sometimes we feel poorly and speak to no one – the conversation is in our heads. Sometimes we feel poorly and seek advice about how to feel better from people in our network including healthcare professionals and non-professionals. Naturally, the person in distress and each of the people in that network have different information, knowledge, tradition, experience, and expertise about the distress and how to make it better. These difference occur within the groups of people: doctors can disagree, loved ones can disagree. Sometimes better means different things to different people. For example, when I have pain, better could mean
  1. I want the pain to go away completely, now,
  2. I can live with a level of pain that allows me to complete my activities of daily living (bathing, cooking, transportation, etc.),
  3. I want to go to my daughter’s graduation in spite of the pain,
  4. I want to feel less anxious about my pain,
  5. I can live with pain that doesn’t interfere with my ability to think or write,
  6. I just need to get some rest.
The are times we act alone. Other times we may not know what to do and we talk about it with someone at the center (that person could be on our health team or not). Or someone may see that we’re in distress and tries to help us figure out what to do.
We could be certain (sure) that a particular action will work – pill, treatment, food, activity. And it may or may not work. I’m sure that these pills or treatment will make my pain go away. The pills or treatment may or may not make the pain go away – for an hour, a day, or forever.
Geeze, this certainty / uncertainty thing can get complicated. We haven’t even talked about when we feel fine and someone suggests we change our habits – stop smoking, lose weight, be less grumpy. I will continue this exploration of uncertainty in weeks to come.

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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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.

Can health care organizations learn?

By Advocate, Consumer, Leader 2 Comments
I’m stuck. I’m obsessed with how organizations learn. In my day job as Vice President of Quality Management at Advocates, Inc., we’ve been considering how to promote Advocates as a learning organization including persons supported and their networks, those closest to the work, and all partners. How thrilling! What a goal!!  But how do we actually do it? I’ve read so many books and articles. But they’re prescriptions with no promise of actually working.

PCORI- Patient Centered Outcomes Research – and us

By Advocate, Consumer, Leader No Comments
You may remember that I’m a Patient Reviewer for PCORI (Patient Centered Outcomes Research). PCORI, a federal initiative, helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community. It’s vision is that patients and the public have the information they need to make decisions that reflect their desired health outcomes.  So far PCORI approved 51 awards, totaling $88.6 million over three years, to fund patient-centered comparative clinical effectiveness research projects. I’ve spent the last month reviewing applications for grants.  I can’t tell you about the grant applications that I reviewed but I can remind you why this important for us and give some observations about the process. Read More

Data, information, knowledge, wisdom, action

By Advocate, Caregiver, Leader 3 Comments

I have written about data and research in recent posts. Readers generally understand about data that is in their electronic medical record (EMR), but several readers have asked me about my interest in patient centered outcome research (PCOR). How does this affect me?  Why your interest?  Let me explain: The field of knowledge management speaks of DIKW Hierarchy (Data, Information, Knowledge, and Wisdom). For our purposes Data are individual observations, sensations, or facts about our health – temperature, pain level, calories, etc. Information adds context and makes some sense of the data: getting warmer, less pain, eating more. More useful than data. Knowledge takes information further: lower fever + less pain + eating more = feeling better. Wisdom is the so what? Leads to doing the right thing. Data, information, knowledge, wisdom lead to Action. You’ve heard me write about Just-In-Time Decisions. I care about having the information and knowledge to make decisions about our health. Data is collected and reported about us by us and by others either directly or through technology. Our health team (patients, caregivers, clinicians) takes that data and turns it into information and sometimes knowledge. Research helps turn data about many people in similar situations into information and knowledge. Only patients and their caregivers step on to wisdom and action. So research can help us get to wisdom and action if:

  • it asks the questions patients and their caregivers ask about best health,
  • patients and their caregivers have access to the research showing what has worked and what hasn’t, and
  • it helps patients and their caregivers make decisions leading to action in their best health journey.

So, I follow and advocate for patients and their caregivers in the research world as I am able. I write about it to keep you informed and to stay grounded in what is important about research. You, my readers, inform my knowledge and wisdom, and guide my action. Thanks. Keeps it up.

Funding Impacts Patient-Centered Research

By Advocate No Comments

I wrote about Patient-Centered research in a previous post:  Just-In Time Decisions. A different version of that post appeared in the Society of Participatory Medicine’s blog. Susan Woods responded to that post with the research funding system doesn’t really work for anyone. It is in concrete, Agreed. It always helps to follow the money.

I am a member of a Boston-based contingent of ambassadors to PCORI (Patient Centered Outcomes Research Initiative). We made three recommendations to the PCORI Board in November. This is a summary of the second recommendation.
Patient-driven, patient-centric research opportunities are less likely to be prepared to submit fundable proposals to PCORI than traditional research teams.
Many professionals and patients don’t yet appreciate the innovation that patient-professional partnerships bring. We’re all patients is a common refrain from professionals when entering into collaboration with patients for the first time. That may be true, yet if that were enough, our health care system would have achieved a level of patient-centeredness that would render initiatives like PCORI unnecessary. Including people who are able work collaboratively while still retaining the unique vantage point of their own stakeholder group is critical to producing ideas innovative enough to handle the challenges our health care system is facing.
We found that
  1. PCORI’s current structure of supplying large grants to a small number of projects favors established research teams and paradigms.
  2. Alternative, nacient teams are less likely to receive highest scores in grant proposal requests.
  3. Research projects addressing partnership innovation, cultural change, social and behavioral determinants, or dissemination are likely not to be funded.
Therefore we recommended that PCORI:

Allocate a defined proportion of funding for a larger number of smaller projects in the form of micro-grants that either prepare a submitting team for a high scoring large grant or addresses research into partnership innovation, cultural change, social and behavioral determinants, or dissemination.

Apparently, PCORI is considering this recommendation. I’m looking forward to following their next steps.

Just-in-Time Decisions

By Advocate, Caregiver, Consumer, ePatient No Comments
  1. Is there a chance that focus beam brain radiation will make a difference to quality of life for a terminal patient?
  2. Will the treatment prescribed (any treatment) cause depression?
  3. Will acupuncture make a difference?
  4. Will all this attention to one family member negatively impact the other members?
  5. What do I do when my doctors disagree?
  6. Can we afford…
Making a decision based on evidence at the time decisions are needed is a challenge for e-Patients and e-Caregivers. Participating in PCORI (Patient-Centered Outcomes Research Initiative) and S4PM (Society for Participatory Medicine) heightens my awareness of the importance of evidence for decision-making and the misalignment of much evidence with the decisions facing e-Patients and e-Caregivers. The medical model of research favors a focus on body parts, diagnoses, and medical treatments. The dissemination of that research favors positive results and academic journals. No access to what didn’t work. Need to rely on advocacy groups and social media for readable and understandable evidence. Recently, several of us made a proposal to the PCORI Board in Boston:
Expand the scope of fundable research questions to include non-diagnosis related questions:
  • Identify mechanisms and key success factors of patient-professional partnerships, patient engagement (actions individuals must take to obtain the greatest benefit from the health care services available to them), care coordination, shared decision-making
  • The impact of peer-to-peer (patient-to-patient, family-to-family, caregiver-to-caregiver) relationships
  • The impact of social determinants (conditions in which people are born, grow, live, work and age, including the health system) on best health
What do you think? What are the magic levers for this change?

Hardwiring Continual Learning

By Caregiver, Consumer, ePatient 2 Comments
I’m learning to type. Amazing after all these years that I still hunt and peck. Cool though to know that I can still develop new brain pathways and muscle memory. Continual learning with a swiss cheese multiple sclerosis brain:)  I watch my grandsons learn, they just keep at it. Fearless repetition. Why is it that I’m reluctant to learn from others’ experience? When I first had kids, I was told to kiss my life as I knew it goodbye. I didn’t believe it, I didn’t learn from those ahead of me until a week after my oldest was born. Now with health care, seldom do we learn, or rather seldom do we have sustained learning. After decades in health care I feel like I’m seeing the same stuff recycle.  Is patient centered really new? Aren’t ACOs a retread? Quality Management is still only good management. Although there is a treasure of science of best practices, we know that clinicians struggle to keep up, break inertia and change practice based on evolving evidence.

Hardwiring continual learning is a magic lever for best health for individuals, organizations and the health care system. Personally, I only have so much energy and space for learning. Inertia is critical to getting on with life.  Success is inertia for what works, learning for what doesn’t. Continual learning requires mindfullness. How do we design continual learning into our lives, our relationships, our products, and systems?