Walking through the who, what, where, and why of clinical decisions and Clinical Decision Support? Why we should care and what can we do? I’m also going to talk about uncertainty, the three T’s (Time, Trust and Talk) and the two C’s (Control and Connection).
Michael Mittelman received three kidneys via transplant, his current kidney from a living donor, his mother. He identifies as an advocate for organ donation, specifically, living organ donors. He also works across disease areas to help companies understand and involve patients. He cares deeply about access and equity in healthcare. For this episode, I’m going to test calling our work as advocates, activists, and partners, an Independent Community Benefit Practice.
You’re in for a treat. Amy Baxter, pediatric emergency physician, pain researcher, and device manufacturer, is the CEO and Founder of Pain Care Labs. We talked about:
- Pain is inevitable, it’s life. Unnecessary pain is wasteful and it sucks.
- Doctors’ superpower is writing prescriptions. While lots of research has been done about non-pharm pain, doctors aren’t familiar with it.
- Public policy doesn’t support non-drug solutions. It funnels people to doctors and medication.
- Attitude and attention impact pain. If you focus on life rather than pain, the pain can be more manageable. We’re in control.
- The 1-10 pain scale has limited value unless you’re evaluating what’s not working for acute pain.
- We could teach our kids about pain differently. Think, dancers and other athletes.
- While cannabis may be helpful for chronic pain, it’s not a panacea, especially for young brains.
We learned about TENS units, Buzzy, the Meissner Corpusle, the thalamus (the brains CPU/microprocessor), the Schmidt Sting Pain Scale, the IKEA bias, beta nerves and mechanoreceptors, and more. My head spins.
I think the most important lesson I’ve learned from Amy is that it’s not about the pain, it’s about what we want to do with our lives and how we manage the challenges we face that get in the way, including pain. Let’s take control. It’s the most powerful tool we have.
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. There may be as many as 7,000 rare diseases. The total number of Americans living with a rare disease is estimated at between 25-30 million. That’s around 8% of the population.
Patient participation in rare disease research, both wet and dry (in a lab with benches and with computers) is, frankly, rare. Of course, patients are subjects of research, but that’s not the kind of participation I’m talking about. I’m referring to patient involvement in 1) setting priorities, 2) study leadership and design, 3) improved access to clinical trials, 4) preparation and oversight of the information provided to participants, 5) post-study evaluation of the patient experience, and 6) the dissemination and application of results. Read More
Health Hats, The Blog is changing. I’m the same 2-legged white man of privilege, living in a food oasis, who can afford many hats, as I was a couple of months ago. But my advocacy, ministry, channel are changing. I fell into this podcasting fellowship and here I am a podcaster, too. I’m having a blast. Loving the sound medium. The blog has been a mouthpiece for me. I tested the limits of showing how full of myself I can be. And it allowed me to think out loud.
You are my loyal audience. I write and produce for you. I start with a germ that’s mine. A question, an idea, an initiative I want to think through. Then I go to it with you in mind. I ask myself, why should you care about whatever? It’s important to me, why do I think it should be important to you? As I write or produce, the germ sprouts, grows into something unexpected, almost all the time. I’m amazed.
The thing about blogging is that’s almost always one-way. I average 1.3 comments per blog post over 6+ years. I’m getting a bit tired of myself. There’s so much about which I know enough to be dangerous. Podcasting can be a two-way street. Me learning about what interests me. I also recognize that some people like to read, others like to listen, and still others like to watch. So, I’m trying to develop all three media: blog, podcast, YouTube videos.
I’m part of a podcasting fellowship: eight weeks of daily coursework with 300 other budding podcasters from all over the world. We created a supportive community during the course. Now that it’s over, over 100 of us are still engaging, sharing, cheerleading, learning together. A model virtual community (I smell another blog post). I’m a budding sound engineer, producer, and interviewer. I added transcripts for readers and deaf folk. Be still my beating heart. Already, I’ve had an ode to my boy, Mike Funk, met men in caregiving, channeled clowns in the doctors office, explored health equity. I’m working on a series about young adults transitioning from pediatric to adult medicine from the young adult and parent perspective, and conceiving a series about pain management.
But I never asked you if this change to blogging plus podcasting was OK with you, what you think of it, or for your constructive criticism. This is me asking you now.
- How do you like this transition and change I’m making?
- Do you listen to the podcast? Read the show notes?
- Do you still find the blog posts, show notes, written stuff valuable?
- What do you think about the topics, the guests, the music, the quality of sound, the noise?
- How about the length? It’s ranged from 20 to 68 minutes.
- I’m using my cousin’s Joey van Leeuwen’s music. Isn’t he great!?
I was going to send you a survey, but I’d rather just hear from you. I’m eager for observations, atta boys, I’m outta heres, creative ideas, topic ideas, interviewees?
Talk to me, please. Email me at email@example.com!
And thank you for your loyalty. Weekly for six years, OMG! We’ve been together a long time in blog years. Onward!
CMS (Center for Medicare and Medicaid)’s work on Value-Based Measures matters for patients and caregivers because we seek affordable, accessible, equitable, and effective medical care. Or in English: Transparent cost within my means, in a location I can reach, in a fair and unbiased manner, for care that is likely to move me and mine toward best health. We, patient/caregiver experts, need a seat at the tables of governance, design, operations, and learning in the medical industrial complex to advocate for that kind of care.
I sat in one such seat (ten of twenty members represented the patient perspective!) on a CMS TEP (Technical Expert Panel). Here’s a blog post I wrote about it Oct 2017 and here’s the associated final CMS report. As I wrote in that post, 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.
The Panel completed its work in July and CMS just published the final report from the Panel. We did good work, our recommendations were heard!
Important to us, People at the Center of Care, are the following recommendations:
- CMS should support measure developers, for example, by promoting the development of a toolkit to assist developers with patient and caregiver engagement. Companies and researchers that develop measures have just begun to learn how to engage patients and caregivers in the work of creating and testing quality measures. They need a roadmap (toolkit). The toolkit should include project planning that includes patient advisors, orientation for patient advisors, guides that researchers can use to recruit patient advisors, communication tools that patient advisors can understand and find.
- Patients and caregivers need to be engaged in all aspects of measure development from priority setting to reevaluation. Just like in any aspect of health care, patient and caregiver experts need a seat at the table of governance, design, testing, sharing and learning.
- Priorities for measures should be based on domains or conditions, not clinical settings or programs. Often measures are hospital-based or office-based. Yet, as patients and caregivers know, care occurs across settings and involves a team of professionals. The measures should reflect that span of care. For example, rather than developing measures intended for hospitals or eligible providers, CMS would focus instead on a clinical domain such as osteoarthritis. In targeting osteoarthritis holistically, CMS can develop measures that track patients across the continuum of care they receive for that condition—developing measures that assess performance among the primary care providers, radiologists, pathologists, rheumatologists, orthopedic surgeons, and other clinicians that might be involved in the treatment of that condition.
The good news is that CMS has already published Requests for Proposals (RFP) about including patient advisors in the measure development process. The bad news is that these RFPs do not expect patient experts to be paid for their work by measure developers. Currently, CMS expects that participants in Technical Expert Panels work pro bono or be subsidized by their employers. Measure development companies, academia, and national advocacy organizations willingly have their employees volunteer with CMS since they benefit from the networking connection, early intelligence, and addition to their resumes or websites. They are still paid their salary for the work. On the other hand, patient experts, included in measure development are usually not so employed and are not compensated for their time. This is not reasonable or equitable. Expertise has value and should be compensated. I am not paid for my work with CMS. I don’t care about padding my resume. I don’t need a better network – part of my value is my network. My time and skill are valuable. Oh well, one step at a time. PCORI gets it. We have more work to do with CMS.
I attended the tenth annual Healthcare Literacy in Research Conference in DC last week as a PCORI Ambassador. As is my habit, when I go to conferences I think, So what? How does this help lay people navigating health and illness?
What is literacy anyway? Ability to read and write? No, that’s not enough. Maybe it’s more. Keywords may include: understand, communicate, useful, culture. Understand whom? People understanding professionals? Professionals understanding people? Who communicates? People, communities, professionals communicate with each other. Communicate what? Useful knowledge about illness, health, or life? Or all of it? In a culture of doctors, nurses, hospitals, and clinics? OR culture of people and communities?
So, at the conference, I was looking for co-produced research (researcher and patient partners) about lay people, professionals, and communities understanding each other to increase useful knowledge about less illness and best health.
Here’s a sample of the best of what I heard and learned.
- Family literacy programs: A call (again) for health literacy in partnerships with adult basic education: In search of ‘new oil’ and ‘new lanterns.’ Maricel Santos. The adult literacy world and public health need to spend more time in each other’s worlds. The goal is not to make things simple, but to make them understood. Literacy existing in the context of life helps literacy matter. Here is an article by Santos. Nice.
- One of my favorite posters, Helping Consumers Choose and Use Health Care. Stephen Rush. Readable, large font, high contrast (unlike many posters which are small font, low contrast at a literacy conference). Very practical. Introducing Just Plain Clear Glossary (justplainclear.com)
- Digital Literacy in an Urban Cancer Population: Who are we leaving out? Alison Petok, Sidney Kimmel Cancer Center, Thomas Jefferson University. My 2 cents: In spite of the literature saying that smartphone use is on the rise and that many use their phones for health, the distribution of internet access is variable across demographics and the proportion of those using a health app more than twice is low. This poster describes this variation in more detail and describes hosting workshops to increase comfort with using portals and health apps. My mom used to annoy me. I was her personal help desk. I suggested she find a 15-year old at church, pay $10/hour, for her personal help desk. She shifted from flip to smartphone and started using health apps. And stopped calling her cranky son.
- Health Literacy in Health Systems: the association between health service providers health literacy, awareness, and attitudes toward health literacy promotion, and patient communication. Diane Levin-Zamir and Shirley Mor from Israel. Health literacy in the context of the settings of medical/patient relationship (hospital and clinic cultures), not the single focus on patient health literacy.
- Health Literacy and Health Communication in the Social Networks of New Mothers. Tetine Sentell. Another presentation considering the context of health literacy. In this case, social networks. Where do mothers get health information about their pregnancy? (Mother, mother-in-law, friends, colleagues) Sad to say, their husbands are seldom part of that social network.
- Communication in the Dental Clinic: Describing the role of health literacy and nonverbal behaviors. Dafna Benadof from Chile. First, love seeing dental as a study area. Dental health is a great barometer of overall health, yet, similar to behavioral health, vision, and hearing, considered separate. Second, so much of health literacy is the written and spoken word. Gestures, facial expressions figure in as well. This study looks at the similarities and differences in nonverbals between patients and professionals.
I was disappointed that I saw few co-produced studies. The research was mostly about illness literacy of lay people in the cultures of doctors, hospitals, and clinics with notable exceptions such as those above. Slowly, we progress. A valuable conference. A good use of my time.
Pain and choices mix, but not too well. A sudden new pain requires professional attention and a pill – I gotta get over this. With severe chronic pain, I pray for some choices that I know might work. I want choices to prevent the pain – a routine. When the pain breaks through I want at least four things I can try. First non-drug that I can do myself (like heat, cold, vibration, meditation), then non-drug help from others, (say, massage, chiropractic), then less side effect drugs (Tylenol, cannabis…). Finally, pocket therapy – something I’d rather not take, but it’s good to have in my pocket, just in case. So, that’s me in particular circumstances.
Almost everyone with chronic illness experiences chronic pain. Chronic pain in the US costs more than $600 billion annually in health care costs and lost worker productivity. I attended and presented at the Agency for Healthcare Quality and Research (AHRQ)-supported Patient-Centered Clinical Decision Support (PCCDS) Learning Network annual meeting (phew, a mouthful!) focused on decision-making in pain management and reducing opioid use. My job was to keep it real.
Please find the audio and slide deck here on my YouTube channel. It’s 44 minutes long with the Q&A portion. Here you can find my web resource page with other pain management resources. It’s a work in progress and will grow over time. Feel free to use any or all of it. I operate under Creative Commons. That means: please give me credit (attribution by Danny van Leeuwen/Health Hats). You can stop reading here or read a brief summary of the talk below. Read More
I received my medical marijuana card from the Massachusetts Department of Health a couple of months ago. I hoped that I could find some additional solutions for cramping, neuropathy, or insomnia. It’s a different world from my 20’s. Then I wanted a recreational high. I never bought pot, just smoked what other people offered. Now that I’m in my 60’s and part of the research industrial complex and the patient/caregiver activist scene, I find this exploration more than curious. The physician I saw for the card, didn’t give me a prescription. Told me about different modes of taking cannabis, a list of the dispensaries in the state, and left me with: People react with such variation. It’s an experiment. Let me know if you have any questions. Imagine that for high blood pressure? I go to a pharmacy and say, I think I’ll try this…
I see on social media that many people rave about the positive effects of medical marijuana. They almost never say what strain, what route, what dose, what effects (intended and unintended), for how long, in what circumstances. Just that they’ve died and gone to heaven using cannabis. I celebrate that they found something that worked for them, but feel no assurance that it might work for me, or what actually worked for them. I’ve reviewed two compilations of research, one from Canada and one from the US. I picked a relevant, seemingly well done, study. I went to four different dispensaries run by three different companies. I asked an earnest young person across each counter about a specific cannabinoid (CBG, CBC, CBD, THC, CBDL, CBN) or terpene that I saw in a study. They sounded very confident while answering my questions but their knowledge seems underwhelming. I did meet one young person (the last of four) who answered, I don’t know. My expectations had become so low, I was excited by the I don’t know.
I understand that marijuana is a drug and like any other drug or therapeutic, the relationship between rigorous scientific comparative effectiveness research and me as an N of one is tenuous. As my first neurologist said, I know what drugs might work for certain groups of people with MS under specific circumstances, but I don’t know crap about you. I need to get to know you and what’s important to you. We will figure that out together.
I bought two different proportions of CBD/THC oil to vape, THC/CBD in peanut butter to ingest, CBD oil to rub on my skin over cramps, and CBD tincture to take under my tongue. Some of the ingredients are in milligrams, some in percentages. I bought a scale that measures micrograms. How do you compare mgs. and percentages? How do you compare smoke, tincture, oil, and peanut butter? It’s baffling.
I’m intrigued about this experiment of me taking medical marijuana. I’m trying to figure out how to keep track of what I hope to accomplish, what I’m trying, and what effects it’s having. I’m daunted. My spreadsheet is insufficient and too much work. I’m searching for and testing diary/journal apps. I spoke with a scientist friend of mine and together we’re skeptical that I’ll find what I need to conduct the experiment of me in a manner that I can keep up with. It certainly won’t be useful to anyone else. I’d love to be able to keep track of myself (patient-generated data) and have it feed into a larger data set of other people keeping track of themselves with analysts examining the data and us all learning together. I’m certainly going to need some help.
What a hoot. Never would have predicted I’d be here, doing this, at my age. Stay tuned. I’ll keep you posted.