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Oct 22 2017
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CMS Quality Measures for People

By Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher

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

Aug 19 2017
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Byzantine Access to My Health Data Serves Whom? Not Me

By Advocate, Caregiver, ePatient

I have secondary progressive multiple sclerosis.  Today, I have a primary care physician in one health system, and four specialists in three other health systems (each has unique ownership, medical record, and patient portal). I use two retail pharmacies, one specialty pharmacy, and three lab services.  I also see an acupuncturist, chiropractor, physical therapist, and massage therapist. I use two durable medical equipment companies. These services almost exclusively communicate through me (or fax – my grandsons don’t know what a fax is). My personal team is my wife, two adult sons, their spouses, and a sister. I have to give them my sign in and password to access the portals. I use a spreadsheet, and three apps to track stuff. I don’t have the patience for the work of building my personal health record in an app. I have no idea what happens to my data in PatientsLikeMe and other businesses. I’d like to give authorization when I think it’s right and track who’s using what, but I can’t. I’m doing OK, thanks for asking. Read More

Mar 15 2015
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Fitting data into life’s flow- a vexing dilemma

By Caregiver, Clinician, Consumer, ePatient, Informaticist, Leader

This third in a series about health care data thinks about how data fits into the life flow of people. We collect data because we want to, need to, or are forced to. People observe their own health journey (life) and remember stuff: How I feel, how much I weigh, how much I eat, how far I go, how much pain I’m in, when I have to be somewhere, what it takes to get there, how much I spent or owe…. We may write it on a piece of paper, on a list, on a form or type it into something, or a machine captures, stores it and may display it or print it out.

Read More

Mar 08 2015
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What is Health Data? An Introduction for Anyone

By Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist, Leader
I took a week off.  I unplugged to attend the memorial service for my mom. Thanks to readers who inquired about my absence, worried if I was OK.  I’m OK.

This is the second in a series of posts about Health Data, Health Information, and Health Wisdom. The first in the series can be found here. This is my 170th post. I starting in July 2012. I have over 2 thousand readers reading this blog as subscribers and in Twitter, Facebook, and LinkedIn from many walks of life and experiences with health care. Many wear more than one hat. Most are patients, some are family and friend caregivers, some are professionals and caregivers by trade, and some work in health technology. This series of posts is geared to everyone. I delight in trying to write for everyone. Considering health literacy while writing helps me organize and clarify my thoughts.  I welcome comments and suggestions. Please send them to me at danny@health-hats.com or @healthhats.

Health data takes a pulse, tells a story, reviews a life, describes a group of people, and links cost to that health journey.

The pulse, represents the natural, and un-natural, changes a body experiences  – higher blood pressure, lower blood pressure; more weight, less weight; happier, sadder; steadier, shakier, pain, fear, anxiety, relief, feeling respected or alone – on and on. Some pulses are felt, seen, heard, sensed, smelled, timed, and some are electronic (lab tests, x-rays, apps etc.).  The most common form of pulse data is the list, a continual pulse over time: medications taken or not taken, minutes or hours of activity, wounds cared for, mood changes… The list can be in your memory, on scraps of paper, in a spreadsheet, on an app, in an Electronic or Personal Health Record, anywhere. People in your team, including you, take different pulses. Most different is that yours are often felt from the inside out, while everyone else’s is from the outside in. This inside/out business is really important. You are the only one who takes pulses from the inside. You are the only one who experiences what you experience. However, it’s all data about the same thing – you.
Mar 19 2013
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Good Government – Office of the National Coordinator

By Consumer, Informaticist, Leader
I frequently write here about access to health information – necessary to just-in-time decision making, tracking status in meeting health goals, coordinating care among your health team – heavily weighted to individual action and team relationships. Effective communication within your finely honed health team is necessary, but not sufficient. You and your team still needs to access and share health information from all sources to coordinate your care. Much of health information sits in electronic tools: electronic medical records (EMR), personal health records (PHR), on the web, in smart phone applications (apps), and medical devices. We can share this information in emails and in the EMR, PHR and apps. Unfortunately, the tools often don’t link. They exist in different languages, requiring expensive translators (interfaces). In industry jargon, they lack interoperability. Often tools within one provider – a hospital, health care system, clinic needs these interfaces to work together. The problem is compounded when you see many clinicians in different systems, as I do. Multiple towers of Babel.  Read More
Nov 18 2012
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e-Patient’s Health Record. Which DAM data?

By ePatient, Leader
Paint me frustrated. In the forums I attend the conversation is almost never about what e-Patients need in their health record. Rather it’s about what the vendor and government communities feel is possible given the current state. Many studies exist about adoption of the Personal Health Record (PHR), but none of them address the usefulness of the data to us as e-Patients. The federal government has initiatives that could increase access to health information by e-Patients. A big step forward. The Automate Blue Button Initiative (ABBI) seeks to facilitate the exchange of health information. But again it’s out of its scope to consider data elements that aren’t already mandated by Meaningful Use. There is also a federal health design challenge: Being able to access your health information on demand can be lifesaving in an emergency situation, can help prevent medication errors, and can improve care coordination so everyone who is caring for you is on the same page. However, too often health information is presented in an unwieldy and unintelligible way that makes it hard for patients, their caregivers, and their physicians to use. There is an opportunity for talented designers to reshape the way health records are presented to create a better patient experience. The challenge has similar limitations as the ABBI. When I asked they said, “The focus of this challenge is to create a design that uses all the fields and sections that exist in Electronic Medical Record (EMR) systems today. The fields we listed come from the CCDA, a standard that all EMRs are building towards.”
Note: The CCDA (Consolidated Clinical Document Architecture) is a patient summary containing a core data set of the most relevant administrative, demographic, and clinical information facts about a patient’s health care, covering one or more healthcare encounters. It provides a means for one healthcare practitioner, system, or setting to aggregate all of the pertinent data about a patient and forward it to another practitioner, system, or setting to support the continuity of care. Its primary use is to provide a snapshot in time containing the pertinent clinical, demographic, and administrative data for a specific patient.
Mind you, this conversation is a huge step forward, but I am unable to engage in a conversation in these forums about what we e-Patients need in our electronic health records?
I have presented the following two scenarios and data sets that I first tried out here a month ago in Give Me My Damn Data:

1) Coordinating care – All of my health team has the same information to share amongst each other – primary care to specialist, specialist to specialist, specialist to primary care, and all to my lay care team (relevant history, allergies, medications, procedures, diagnostic study results, impressions, diagnoses, unresolved dilemmas, next steps).

2) Unexpected care – The information is readily accessible to whoever takes care of me in an unexpected situation when I can’t fully communicate for myself, like an Emergency Department. (Current medications and medications that didn’t work, allergies, doctors, procedures, relevant history, recent diagnostics studies, ability to communicate, ability to learn, caregivers, typical reaction to pain and the unknown, what works to relieve pain, inform, and calm me, and cultural and spiritual needs).

Seldom do the underlined items exist in even the best EMRs, never are they retrievable by me or my health care team. This isn’t good enough.

Help me present more clearly by sharing your thoughts in the comments to this post:

1) the scenarios in your experience where medical record content was critical to care 

2) the data set (information) the record should contain in those scenarios.

 Today the question is what. Next will be how – How do we move the industry to put all the information e-Patients need in the health record?
Oct 24 2012
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Care Coordination

By Advocate, Caregiver, ePatient, Leader
According to the September 2012 Institute of Medicine (IOM) report, Communicating with Patients on Health Care Evidence, 97 percent of those surveyed with chronic conditions agreed that their care ought to be coordinated. Yet, only 54 percent said that their care was currently coordinated. If asked is my care for MS coordinated, at first blush I’d say yes. But then I wonder how do I recognize coordinated care? Would it be that all my providers talk to each other, work off the same data set? I realize that I am the coordinator. I ask for reports from one be sent to the others. I keep each informed about what the others are recommending and prescribing. I have a great team. I am completely satisfied with their expertise, the relationships and communication with me, and my health outcomes.  My primary care doc takes her role very seriously. They all discuss options with me and seek out my personal goals and desires. They all have EMRs. Yet I am still the coordinator.  Without my active coordination my care would be fragmented and based on incomplete data sets. I don’t need more than that, because it works, and I am very stable and cognitively very present and engaged.  What if I weren’t? How would my care be coordinated?  Would my wife or sons take it over, would my primary care doc step up? Yes, they would.  Again, I’m very fortunate. I don’t see that coordinated care is the path of least resistance nationwide. It should be. How can it be?
Oct 04 2012
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Give Me My Damn Data

By Caregiver, Consumer, ePatient
Making decisions about my best health requires information, wisdom, faith,and luck. Information comes from data, observation, and communication. Wisdom comes from experience and reflection. Faith is trust. And there’s a crap shoot in choices, who knows. For me health care decisions is a team sport, best done when I’ve been able to hand-pick my team – professionals and loved ones. Necessary to my decisions is access to my medical record. Access to my medical record by itself is like drinking water of unknown quality from multiple fire hoses. I have at least ten medical records, seven of them electronic. My primary care, neurology, ophthalmology, neuro-ophthalmology, cardiology, and urology records all electronic and on different systems. My massage, acupuncture, and chiropractic records, all paper. Not to mention my electronic Personal Health Record on Microsoft HealthVault that I use to try to consolidate them all.  I have a chronic illness but I function well. I’ve never been an inpatient. Are you dizzy yet. My periodic, episodic decisions are somewhat based on the data in the records, but more on knowing my nonnegotiables (e.g., nothing that makes me depressed) and having faith in my professional health team. I worry about two scenarios related to my medical record:  1) I want all of my health team to have the same information to share among each other – primary care to specialist, specialist to specialist, and specialist to primary care (relevant history, allergies, medications, procedures, diagnostic study results, impressions, diagnoses, unresolved dilemmas, next steps). Now I have to compile it to share. 2) I want the information readily accessible to whoever takes care of me in an unexpected situation when I can’t fully communicate for myself like when I fell, had a concussion, and went by ambulance to the ER (Current medications and medications that didn’t work, allergies, doctors, procedures, relevant history, recent diagnostics studies, ability to communicate, ability to learn, caregivers, typical reaction to pain and the unknown, what works to relieve pain, inform, and calm, and cultural and spiritual needs). Ideally, I would have a health partner with me to help, but I might not – luck.

In the face of this quagmire, I marvel that some providers question whether I should have real-time, unfiltered access to my medical record.  If I don’t, who will? They don’t. Nobody has unfiltered, real-time access to my complete record. Decision-making is a minefield of insufficient information, wisdom, sensitivity,or trust with awkward emotion and  bad luck. Access to real-time, unfiltered information is necessary to decision-making, but insufficient. Give me my damn data.
Aug 23 2012
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Errors in Electronic Medical Records

By Clinician, Consumer, ePatient, Leader
I’m concerned about errors in electronic medical records. I love my technology, I’m an early adopter. I participate in several national initiatives bridging the consumer and health technology – HIMSS (Health Information Management Systems Society)  eConnecting with Consumers Committee, Society for Participatory Medicine, the federal Automated Blue Button Initiative, TIGER (Technology Informatics Guiding Education Reform), Patient Adherence Workgroup. I have a PHR (Patient Health Record) through Microsoft Health Vault and have enrolled in patient portals for all my physicians who have one. What worries me is the quality of the data in those systems. As a nurse, quality improvement expert, informaticist, leader, and  consumer, I know the opportunities for errors in data. Databases and electronic information are only as good as the information in them.  We all have our stories about frustration with erroneous data in our credit reports and how difficult it is to fix it. Health care data is the same only there’s more of it. Clinicians are challenged to correct mistakes in electronic data. Here is an article about clinicians correcting electronic data mistakes. As consumers expect and receive more and more access to their electronic health data, they will question the quality of some of that data. How will they be able to correct it? Correcting electronic data is complex and labor intensive. Here is an article about consumers correcting their records. Do any of you have experience with errors in your medical record, electronic or paper? Please share.
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