Data

For all who hate computers in medicine: here’s what we got before.

By e-Patient Dave DeBronkart

The photo below shows what “visit notes” from a doctor appointment might look like in the era before computers. Just two days before my first speech where I said “Gimme my damn data,” I had an ENT visit, and on the way out I asked for a copy of the doctor’s notes. The clerk snickered out loud and showed it to me, saying, “If you really want it….”

No joke; this is what the doctor had recorded.

Visit notes from my ENT appointment, Sept 15, 2009

The horrible usability of many of today’s EMRs has understandably caused a lot of bitching from their users (clinicians). I totally empathize and I want it fixed. I’m grateful for the dozens of very smart people whose years of study, training, and clinical experience helped save my life in 2007, and I want them to have a good life, not one filled with horrible machines.

But the remedy for usability problems is not to go back to paper, it’s to force vendors to fix it. (I spoke in 2010 and blogged the video in 2011 about a major reason for the usability problems: the EMR executive who was strongly rumored to have said that usability would be a system criterion “over my dead body.”)

Another example: Peter Elias MD (retired), my colleague in the Society for Participatory Medicine, says that when he repeatedly asked his employer (a large medical center in Maine) to grant patients access to all their chart data, every time the management said they couldn’t, because the data is such poor quality.

Peter loves wisecracks and perverse aphorisms; his email signature says “The chief cause of problems is solutions.” We cannot assess solutions to system problems without remembering why the systems were needed in the first place: pages of crap like that were of no use in improving healthcare, or even in knowing what was going on nationwide. (Imagine being an E.R. doctor or someone providing coverage for a doc on vacation, and having to practice medicine based on that sheet.)

P.S. I bet that ENT’s experience is that patients have no clue what’s going on.


For healthcare to achieve its potential, the information gathered by smart clinicians must get digitized, same as all the other information in every other industry in the world. If the systems to do that are bad, we should insist that the vendors fix them – not return to scribbles.

e-Patient Dave deBronkart is a cancer survivor, noted for his activist work in promoting access to health care data. This post originally appeared on his blog here.

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3 replies »

  1. Sure, the old clinic note was not great. But the issue with the EMR now is not the actual chart, but how we are are required to chart a visit. If my EMR allowed me to chart electronically only what was seen and done in the office, without needing to reach a certain number of checks to reach a particular ‘level of exam’, my aggravation would be much lesser. And my EMR chart would look a lot neater as well.

  2. Here is what we got in the US in the decade after HITECH to MACRA to PCMH to Value Based
    1. Declines in primary care visits with worse to come as practices pay more and more and get less – the opposite of value and clearly a move toward higher costs and lesser quality
    2. Declines in primary care visits for the elderly in particular (pointing to CMS and disruptive innovations)
    3. A decline from 38 billion to invest in primary care where most needed to 30 billion after subtracting the added costs of delivery (about $30,000 to $50,000 more per primary care physician per year and only at 30% penetration (Health Affairs and other articles). This is the death toll for the practices of 60,000 primary care physicians in 2621 counties lowest in health care workforce – counties with half enough generalists adn general specialists already – and getting worse. They only had 25% of primary care MD DO NP and PA workforce for this 40% of the population growing fastest in population numbers, demand, complexity
    4. Massive economic damage and disparities due to worse health insurance plans expanded – plans that often pay less than the cost of delivering care if they cover primary care at all and if the patient can find primary care to see

    I doubt whether today’s health policy experts ever consider the consequences as seen in DRGs to the present. Enough is enough. Focus on support of the team members that deliver the care. Focus on Basic Health Access for most Americans. Stop designing more billions into the hands of corporations, consultants, and CEOs that do not deliver care. Hold your designs accountable to ethical and moral standards – similar to physicians or human subject researchers.

    Micromanagements of cost have not only failed to save costs, they added to costs.

    Micromanagements of quality have not only failed to improve quality, they have substantially added to costs.

    A new misguided bandwagon focused on Social Determinants of Health for even more profits is underway.

    The steady “progress” toward value based design has made basic health access worse – and health access is one of few variables associated with cost and quality improvement.

    And since the outcomes are predominantly about the various social, environmental, situational, personal determinants of health, look at the economic situation before and after
    1. Billions and billions less remaining in these 2621 counties after having these dollars extracted for mandated health insurance that is rather meaningless and costly
    2. Billions less for the primary care practices that have paid for innovation, regulation, digitalization
    3. Revenue declines due to penalties imposed upon hospitals and practices – because they care for populations with inherently lower outcomes.

    The designs not only destroy basic health access, they also discriminate. They are also likely to lead to worsening of outcomes because of the economic changes imposed.

    Even worse, the high costs of living (especially housing) in counties with higher concentrations of workforce and social support resources is forcing millions of Americans to move to counties lowest in health care workforce. Decade after decade these 2621 counties are growing fastest as the higher concentration counties fail to reach average or in some cases have population declines. The disparities in access, workforce, economics, dollars, and jobs are worsening.

    And Americans are aging and getting poorer as they age – to force more migration and disruption and lesser outcomes.

    As a nation we must stop polishing health care for the top 30% and focus attention on the bottom 50% falling further behind – because of our designs for health, education, economics…

  3. Thanks for the cross-post! I hope people will also check the comments on the original post, where I’m collecting notes people have sent regarding harm or danger from such things.

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