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Medical Record Archives - Danny van Leeuwen Health Hats

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

Tales of Woe

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader | One Comment

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

Person-Centered #CarePlanning – What Data?

By | Advocate, Caregiver, Clinician, ePatient, Family man, Informaticist, Leader | No Comments

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 whatWhat 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

Standard Health Record

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

win_20161030_08_52_02_proI’m on vacation this week. A Blues Cruise. Heard two bands with bari saxes already – Los Lobos and Selwin Birchwood. Today, I’ll try to join the Pro-Amateur JAM.

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.

What Happens Next? Planning Care

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Informaticist | One Comment

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.

Transitions – What you don’t know can hurt you

By | Caregiver, Clinician, Consumer, ePatient, Leader | One Comment

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

Scared?

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader | 3 Comments

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

Changing habits – for people and payers

By | Advocate, Caregiver, Consumer, ePatient, Informaticist | No Comments

I love my health team. They help me stay tuned up with my chronic challenges and they get me through unexpected crises. Still, I  see them way too often. 3-5 times a month and I’ve never been an inpatient. Professional contact is a drop in the pond of my health. The rest of the time (also known as my life) I set and track goals and habit changes. I have questions about my plans and treatments. I deal with changes in my life that affect my ability to do the work of habit change.  I network and I research. I worry and I celebrate. I have tools to help me that are largely disconnected from my health team. I track steps with my iPhone, my diet with MyFitnessPal, the support communities of MyTreatment and PatientsLikeMe.  I can communicate with some professionals via portals and can receive one way data via OpenNotes, also with some professionals. Read More

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?

Read More

Secretary General of Your Health Team

By | Advocate, Consumer, ePatient, Family man, Leader | 3 Comments

I want to be a good leader of my healthcare team. How would I know?  Such a swirl of activity. This week my ophthalmologist wanted to refer to me another ophthalmologist.  She said she’d email her to introduce me, send over my records, and have her scheduler arrange the appointment. I’ll follow-up if I don’t hear from the scheduler in a week. My chiropractor wants to hear what the massage therapist and physical therapist recommends and aligns his plan with theirs.  My neurology nurse practitioner called me to say that the insurance company won’t cover the brand name injection I’ve taken for years because there’s a new generic medication. She doesn’t think it’s been tested enough on people before FDA approval. Instead she will prescribe a different dose of the brand name drug instead that’s still covered.  Is that OK with me?

My healthcare team is like no other team in my life – not like family, not like business teams. It feels like a team in the clouds. They never gather together as a team.  If they communicate at all it’s through me, or emails and snail mail reports, or if they’re in the same system through the electronic health record. I can think of once in 7 years that any clinician spoke to each other directly: my primary care doc called the neurologist when I fell and sustained a concussion. My wife has attended a couple of doctor appointments with me when I was first diagnosed with MS. Several times a year a prescriber speaks with a pharmacy or medical supply company to clarify an order. My family likes to stay current about my treatments, risks, appointments, and stress. They talk with me and among themselves.

Who is my team?  Me, my wife, my sons and their families, my sister, my doctors and their teams, other clinicians (massage therapist, chiropractor, acupuncturist, physical therapist, optometrist, optician, pharmacist), medical supply companies, insurance company. I’m fortunate. I’m a good e-patient and I’m a clinician myself.  I’ve selected this team (except the insurance and pharmacy benefit companies).  One of my best barometers of team effectiveness is usually how the team operates when the leader isn’t in the room. Do they work better when she’s present or absent? Do the team members treat each other with respect? Is communication open? Are they clear about accountability, do they meet their commitments? But in healthcare there are so many other factors and power dynamics between clinicians, office staff, caregivers, insurance companies, administrators.  It’s crazy complex – like being Secretary General of your health team. I wonder what Ban Ki-moon would advise?