My medication lists don’t match and none of them reflect what I actually take. I have received doctor visit print-outs and seen on-line summaries in five doctor offices and two infusion centers in the past year. Each place does some sort of reconciliation at each visit. In one, a medical technician asks me what I’m taking while looking at the screen, making changes. I say I don’t take that anymore. That one’s as needed, but I haven’t taken it since my last relapse. That was stopped years ago and taken off twice before, etc. The doctor reviews the resulting list. When I check the portal after the visit, some changes aren’t reflected. Other offices print out a list and ask me to write changes and return the list. The lists don’t reflect the changes I made last time. No surprise – the portals don’t reflect any of the changes. Another asks me while looking at the EHR, this compounded medication isn’t on our list, we’ll leave the non-compounded version (a doctor in their system prescribed the change and directed me to a pharmacy to have it filled). One doesn’t allow my twice-a-year infusion to be listed as such (only allows the number of times a day). I have a moderately simple medication regime taking 4-5 prescribed pills and salves, twice-a-year infusions, plus 3-4 over the counter medications with three as-needed (PRN) meds. I use two local pharmacies, a mail-order pharmacy, and a compounding pharmacy, depending on which has the lowest out-of-pocket cost. I’ve never had an inpatient hospitalization. Read More
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.
When Liz found herself unwilling to floss, she knew that major depression was soon to follow. She’s going to need help. She tells someone who knows how to help her before she loses the will to take any action. When I start to get dizzy, I know my MS symptoms will soon get worse. Drinking water almost always helps. Water! Sometimes I feel like I’m going to cry. No real reason. Normal life. It’s a signal that I’m overtired. Nap or meditation is next. It always works. If John feels stressed and bloated, a flare-up of his Crohn’s is soon to follow. He avoids certain food, takes acetaminophen, and stays near a bathroom. When Tiffany gets a rash she needs to see her doctor within a couple of days. If she has joint pain as well, it can’t wait a couple of days. Tiffany has lupus.
Liz, John, Tiffany, and I recognize signals that trouble is coming and action is needed. We learned the signals because we are wired to take the step back and watch ourselves from a distance. We are mindful and curious about patterns. It takes time until the Eureka/recognition minute hits. None of our doctors ever asked us if we knew our signals or asked us about our patterns. We are all four fortunate to have a friend or care partner who listens to our ramblings. It’s during these ramblings, complaining, wondering, pattern-seeking, and problem-solving that we learned first one signal, then more. Two of us have clinicians that helped us figure out what to do once we told them about our signals. The other two tried stuff they learned from our advocacy associations and social media networks. We are so relieved to be building this tool chest of actions to take when we recognize signals. We are eager to discover more patterns and signals. It’s like turning over a rock and finding a twinkling gem.
Once we recognize a pattern, a signal, and an action that works, we can start to look for triggers. Triggers are stressors we know will be likely to cause a signal. Managing triggers is prevention. Liz, John, Tiffany, and I have a common set of triggers: emotional stress, inactivity, smoke inhalation, insufficient rest. We also have unique triggers. They are many and varied.
Traditional doctor visits seldom contain routine time to learn about and discover signals, triggers, responses, and prevention. The electronic medical records seldom keep track of this learning, action, and response. It makes sense (silly, but makes sense). It’s time-consuming and it’s not in the many medical professionals’ training and workflow. It’s up to us and our personal health team. I find that people who blog about their illness and their life challenges caused or made worse by their illness, almost always write about signals, triggers, and actions. You can find many on The Chronic Illness Bloggers here on Facebook. Liz, John, Tiffany, and I also keep track as we learn about what worked – Spreadsheets, journals, or blogging.
Not everyone has a pattern-seeking brain. Even if they do have a pattern-seeking brain, they may feel so bad that there’s little space to use it. So it’s up to our care partner, our friends, our social network, to help us. It’s liberating. It’s diagnosis agnostic (true for any chronic illness). It’s so totally worth the effort. What have you learned?
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:
- Measures serve to evaluate the performance of individual practitioners (not measure whether patients attain optimal health or how the team is functioning),
- 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),
- 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),
- 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?),
- People at the center of care, insurers, and policymakers all feel ill at ease with uncertainty,
- 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),
- 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),
- 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
From my memorable quotes pile:
Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?
Recently diagnosed patient: I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office. Now I’m home, how do I get my questions answered? Read More
More about person-centered #CarePlanning. (If you missed my first post go here)
Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel.
In its simplest form communication is who, what and how. Who needs to communicate? What do they need to communicate? How will they communicate?
#CarePlanning focuses on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?
Let’s engage to better understand #CarePlanning from the point-of-view of the person (mostly as patient, sometimes not; usually including family and/or caregiver), rather than from the point-of-view of the doctor, the hospital, or the insurer. What does the person want to accomplish, who on their team (including the person) is going to do what? by when? Let’s also narrow our focus to #CarePlanning that can be to communicated during transitions between settings rather than within settings (For example, between home and clinician office, between hospital and rehab center, between home and work or school. Not within the home, hospital, clinic, or agency). Next, let’s look at #CarePlanning during illness rather than wellness or prevention. Edward Suchman (1965) devised an approach for studying illness behavior with five key stages of illness experience: (1) symptom experience; (2) assumption of the sick role; (3) medical care/healthcare contact; (4) dependent patient role; and (5) recovery and rehabilitation. (my italics added). Finally, let’s be sure to include the social determinants of health or as us non-academics call it, life. Read More
So just a quick post:
Last week I was invited to the @MITRE Corporation by @HarrySleeper and met teams working on:
- Standard Health Record, an open source single health record, if it happens to the person, it’s in the SHR. Secure, informed-consent access to our health data across multiple platforms with advanced security and privacy protocols. Accessibility for us and authorized family , care partners, and healthcare providers to our health-record 24/7, anywhere in the world. Empower people with an enduring voice by allowing us to add, verify, and easily share our data with trusted third parties
- Intervention Engine, assigns risk rating and prioritizes patients for clinician team members in clinics and offices to huddle and review patient status and proposed interventions
- SyntheticMass, a test database of Massachusetts residents health records simulate population health. Expecting to have all 7 million loaded in 2021
- Bonnie, a tool for pretesting clinical quality measures
- Social Determinants of Health, a great graphic for a holistic picture of health
Thanks to @JuhanSonin for the intro. Amazing work going on. Need to spread the word. Till next week.
People: What’s wrong with me? Should I tell the doctor? What does she want me to do? Can I afford it? Does it (will it) hurt? Can I (will I) still take care of my family (go to work, go out, have fun)? What happens next? How’m I doing now? Did it work? Did it help? What should I worry about? What should I do if it happens (again)?
Clinician: What’s on his mind? What’s wrong with him? What should I do next? Did it work? What do the tests tell me? What should he do next? Did he do it? Will he let me know? What is anyone else doing about it?
Questions, questions, questions. So many bumps in the road and detours in the health journey. Few maps, spotty GPS at best.
Essentially, the medical part of the health journey is 1. Finding out what’s going on (diagnose). 2. Plan care (What needs to happen, by whom, when? What do we expect to happen (outcome)? What could go wrong, how can we prevent it, and how will we deal with it if it happens?. 3. See if the plan worked. 4. If it didn’t, adjust, try something else.
We are each an experiment of one.
These days I’m fascinated by the planning care part. Neither the patient nor the clinician can plan care alone. They need each other and much support – family members, other professionals, technology, and most of all – communication.
Eventually, everyone plans care – usually over and over. Our health system doesn’t seem geared toward planning care. Ten minute infrequent visits between patient and clinician. Routines and technology that can’t handle the dynamic, constantly changing information flow of planning care. The information certainly isn’t easily available to everyone on the team when they need it. Few, if any, rules (standards) exist for patients putting information in.
People: When you speak with a clinician, agree upon a plan of care. Set up a way to ask questions as they come up and report on status, be it portal, email, phone, or keeping a journal.
Clinicians: Use the words plan of care. Write the plan down. Let your patients know how to communicate status and ask questions as they come up before the next visit.
Everyone: Expect your electronic health records to be able to record and track care planning.
Still exploring communication across transitions. This week speaking with clinicians. First, with case managers in an acute, short-term rehabilitation center serving people with recent strokes, heart conditions, or surgeries needing less than a month of intensive therapy. The transition points between nurses shift to shift, between physicians and between case managers, between patients, families, and primary care clinicians at discharge worked the best because they’re well documented and standardized. Tools are in place for the sharing of information. Either the hand-offs between clinicians are routine or patient education notebooks are completed the same for every patient: not the same contents but the same workflow. Since it’s not acute care (short stays) there is more for hand-offs and to develop relationships with the patient and their caring network and time for patients and families to absorb the instructions. A considerable volume of paper is generated, resulting in lots to read and lots to fax (everything by fax!). Maybe too much to read. Information coming in with patients was less complete than information going out with patients. Communication was better in general and more complete if a person received all their care within the same health system. The biggest risk? Not receiving information about critical medications, such as blood thinners, steroids, and antidepressants.
Next, a community Primary Care clinic. Again, communication best when a person is discharged from a hospital within the same health system as their clinic. Then a nurse knows when someone is going to be discharged or has been discharged. The nurse calls the patient at home and can let the doctor know that the patient has their prescriptions filled, knows what to do, or if anything needs attention. For the patient discharged from a hospital outside the health system, the clinic often doesn’t know the patient was even in the hospital and has to scramble to gather information so they can support the person. The transition from home to office works least well. Someone calls the office needing an appointment or has a question or needs a prescription filled. The quality of screening, triage, and information gathering varies widely The more the patient or caregiver takes charge, the better the communication with the call center the better the clinic visit goes. Transition communication with specialists outside the system seemed quite a challenge without a common EHR for communication. Read More
My friend, Phyllis, in Cleveland suggested I might be asking the wrong question: “What works for me when I’m scared and what doesn’t?” You may recall that readers who have been patients and caregivers have been adamant that this is a key piece of information that should be in the electronic health record, especially needed in the ER. In 5+ years of advocacy I’ve been unable to generate interest from IT wonks. Anyway, I was whining about my ineffectiveness to Phyllis.
So let’s break it down a bit more. I’ve never met anyone in an unexpected health situation who wasn’t scared. Scared looks like: startled, numb, stomach ache, sweating, heart racing, catastrophizing , panicked……
It’s good to know in advance what helps settles me down. Deep breaths, meditation, hold my hand, a good laugh, quiet, a walk, listening to John Lennon, my wife and family, more information, respect from those around me plus listening to me, Ativan. My mom needed a hand to hold, control, opera. My friend needs someone from his immediate family and information, reduced stimulus, quiet, to be kept warm, headphones with classical musical. We all can use something. The unexpected health care situation can vary. My chronic condition, MS, could flare up – known yet unexpected. You could break your leg – an accident plus pain. You could have a heart attack or kidney stones – sudden, debilitating, with pain. You could be alone or with someone you trust – very different scenarios. Read More