Tag

Advocates 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

Making a difference as circumstances change

By | Advocate, Caregiver | No Comments

I love hearing, That’s a great idea! I’ll try it. I’m delighted when I say it. This week my chiropractor said, You need more hydration, try drinking one more glass of water this week, and two more next week. I’m tickled when I counsel someone and they say Great idea, I’ll try it, as happened this week.  I spoke with a friend with a rare disease in a new community, Maybe you could focus next on building a new care team, Those are making a difference of one.

There’s another thrill to being a good leader and making a difference for a team: Family first. What do you need to get the job done? What do you recommend? We’ve got to have fun doing this. Some make a difference for communities, nations, the world with products and policy. For example, Obamacare provided health insurance for 20 million people; the Internet allowed virtual supportive communities to form. And there’s in between, as when a client says That’s a great idea to my proposal, we could use this platform to promote caregivers’ coaching each other and the caregivers could earn some money at it? Read More

What Keeps You Up at Night?

By | Advocate, Caregiver, ePatient | No Comments

I’m not a complainer or worrier-at least not often or for long. Comparatively, I have little to complain or worry about. Yet, this week I struggle with pneumonia, try to regain strength, not hurt myself coughing and not being a jerk or a burden. I’m also turning 65 and enrolling in Medicare. I keep dwelling on the amount of effort it takes to be or support someone who is sick. What is that effort? I’ve come up with six questions anyone who is worrying asks themselves. You’ll see in the pie chart below that I’ve arbitrarily assigned a percentage to how much I think most people worry about each question. (No science here, no evidence, just my thoughts)

Read More

$35 or $30,000 (I think) for a lifesaving drug

By | Advocate, ePatient, Leader | No Comments

Who benefits from the murkiness of finding the prices of prescription drugs? Clearly not patients and caregivers.

Today, I’m taking two potentially lifesaving drugs – azithromycin and rituximab.

According to GoodRx.com, azithromycin, prescribed for my pneumonia, has a cash price of $35 with a $10 copay cost to me.  Took me 10 seconds to find this.

I’ve spent more than four hours and I still don’t know how much the rituximab, a chemotherapy infusion for my multiple sclerosis, costs or will cost me. I’m turning 65 next week and I need to select a Medicare Advantage Plan. I spoke with several insurance companies. None can (or will) tell me the cost of Rituximab to them or to me. They differ whether it’s a formulary drug (covered at all). They differ whether they consider it a drug covered under Medicare Part D (see below) or an infusion, covered under Medicare Part B. If Part B it may be included in my premium.

Read More

E-Patients, experts with lived experience

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

This week I connected a patient with expertise in billing with a patient at the tail end of chemo struggling with huge unexpected bills. I introduced a cancer survivor with web design skills to a patient advocate setting up a new blog.

I’m struck by the breadth and depth of professional skills I encounter as I explore e-patient communities. (e-patient: empowered, engaged, enabled, equipped).  e-Patients have lived experience. I encountered the concept of lived experience first while working in the mental health world. According to the Mental Health Coalition of South Australia (MHCSA) a lived experience worker is “a person who is employed in a role that requires them to identify as being, or having been a mental health consumer or carer.” Read More

Bad experience? Now what?

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

I read a post this week on the Society of Participatory Medicine’s blog about a nightmare attempt to obtain medical appointments as new patients. You’ve faced the poor listening skills, conflicting information about the availability of appointments, lack of sharing information about you within the clinic or insurance company, poor or no follow-up, waiting, waiting, waiting, that the author describes.

I’ve dealt with it, too, as a patient, caregiver, clinician, and quality management leader. So, how do health care clinics and insurance companies know about the challenges their patients/customers live through? The most common is through surveys. Surveys are blunt (not sharp) and fairly useless. Most health plans require clinics to administer the CGAHPS Clinician and Group Survey. Three questions on the survey include:

  1. Patient got appointment for urgent care as soon as needed
  2. Patient got appointment for non-urgent care as soon as needed
  3. Patient got answer to medical question the same day he/she contacted provider’s office

You can answer Never, Sometimes, Usually, Always.

Most health plans survey patients about health plan service:

  1. In the last 12 months, when you needed care right away, how often did you get care as soon as you needed?
  2. In the last 12 months, how often did you get an appointment for a check-up or routine care at a doctor’s office or clinic as soon as you needed?
  3. In the last 12 months, how often was it easy to get the care, tests, or treatment you needed?

See, not very informative. A score might be more than 80% of patients say Usually or Always? That could mean that 19 of 100 people responding are unhappy with their experience. Wow. How can anything be changed based on that result? Read More

Taking a Risk

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

OMG, I’m upgrading my website. I started the blog almost 5 years ago setting up the website with help from my friends Eric and Jodi (this is my 305th post). Now I want more from the website. I’m adding two pages: Portfolio to share my articles, guest posts, interviews, and projects. How Can I Help You? For topics we care about and related resources. I’m determined to create it myself – much like my wife and I built a house – seriously ignorant, reading instructions, tutoring, advice, and making significant mistakes while putting one foot in front of the other persistently. Learning something completely new is a frustrating gas. Frustrating until you learn a bare minimum of the language, get the right tools, building a support team, and finding the growing mindset of I can do this!? Frustrating when you mess up big time – like a couple of days ago when I unknowingly loaded 13 sample posts with my new theme and they went out to all of you looking like spam. (Thanks for letting me know and hanging in there with me.) A gas when you stumble upon or are pointed toward a solution, when you can find the solution a second time, when you can start to see the creation, and when someone else appreciates it. Gosh, this sounds like living or supporting someone with a chronic illness, living in another country or community, playing music, going to school, or starting a new job. Read More

Cinderblocks4 – Medical Advocacy at its Best

By | Advocate, Caregiver, ePatient, Informaticist, Leader, Musician, Researcher | No Comments

 

Pound for pound, the best health conference! A rare combination of small, local, action-oriented, inspiring networking, and relaxing. 40-50 attendees met in Grantsville, Garrett County, MD, population 766, for three days. Regina Holliday of Walking Gallery fame organizes and breathes life into Cinderblocks. The older I get, the more I seek people who collaborate to solve local problems that matter to them.   50% of the 30 presentations were literally local – from Garrett County and immediate vicinity. The rest came from as far as France and LA, Oklahoma, Texas, Boston, and DC to learn what works for each other. A sample: Read More

Calling All Advocates – Health Hats Interview

By | Advocate, ePatient, Leader | No Comments

You know I love stories, telling and listening. Especially stories of people on a rough health road who take the fork to advocacy and community organizing. Advocacy and community organizing isn’t for the faint-hearted. It’s a tough business. Passion and lived experience are necessary, but not sufficient. Advocacy is a struggle. We need lessons learned from advocacy experts. Read More