Why Patient Experience Matters to Me

on March 21, 2017

In my Watercooler article, I discussed the concept of Patient Experience (PX): what it is, why it matters, and a framework for thinking about how to improve it. It’s of immense significance to me, as I spend much of my professional life working with health care organizations on this very issue. But PX matters to me for another, even more important reason.

In April, 2001, my daughter Rebecca (19 months old at the time) was diagnosed with Type 1 diabetes (T1D).  Chances are, most of you reading this will know people with diabetes, but most of those individuals will have Type 2 (T2D).  T1D is a very different disease, with different causes and very different implications for health, wellbeing, and lifestyle. At the onset of T1D, the body’s immune system attacks the islet cells in the pancreas, destroying the body’s ability to produce insulin. Without insulin, the body has no way to regulate its blood glucose level, so patients with T1D require regular injections of insulin, and each day becomes a never-ending battle to keep blood glucose (BG) within a narrow range.

T1D is a terrible disease. On a daily basis, patients with T1D are at risk for severe hypoglycemia (low blood glucose), which is a life-threatening condition. Over the long-term, the consequences of hyperglycemia (high blood glucose) can be devastating, resulting in damage to the kidneys, liver, heart, eyes, hands, and feet. For those interested in knowing more about this disease, and the history of its treatment, I highly recommend Breakthrough, by Thea Cooper and Arthur Ainsberg.

For my daughter and my family, the initial diagnosis was a shock. We had no family history of the disease, and the challenges of learning how to care for a small child with T1D were overwhelming. Over time though, we began to understand that if your child has to live with a chronic medical condition in the 21st century, you could do a lot worse than T1D.  While there is no cure, the science and medical treatment have advanced to such a state that it is possible, using technology and diligent effort, to closely replicate the workings of a healthy pancreas. There is a large body of medical evidence on the best ways to diagnose, treat, and manage this condition. And a patient with well-managed T1D can live a long and essentially normal life, albeit one with innumerable hassles related to the tasks of BG monitoring and control.

Fast forward to today. We’re about to turn the calendar page to 2017, and on January 1st, I will be able to tell you, with almost 100% accuracy, exactly what medical care, and when, my daughter will need over the next 12 months. There is a lot of care needed, which incurs significant time and costs, but there is virtually no uncertainty.  Just to give you some idea of what a year in the life is like, here’s an incomplete but representative list:

Daily

  • Five or more finger pricks to draw blood to test BG levels
  • Carb counting at every meal to ensure adequate insulin dosages

Every 2-3 days

  • Replacement of infusion site (the small medical device that connects the insulin pump to a tube that is inserted in her abdomen) and replenishment of insulin in her pump

Quarterly

  • Lab visit to get blood drawn for a hemoglobin A1C test (unlike daily finger pricks, which monitor instantaneous BG levels, the A1C test gives a more comprehensive long-term view of how well BG is being controlled). The A1C value is a critical variable for the endocrinologist to consider when making potential changes to her treatment regimen.
  • Visits to the endocrinologist for a comprehensive diabetic exam and any necessary adjustments to her treatment regimen

Annually

  • Full physical with her primary care provider
  • Comprehensive eye exam with an ophthalmologist

It may seem like a lot, and it is, but again, there is basically no uncertainty here. The above-described regimen is well supported by current medical science.

And yet, for all the certainty, it is astonishing how many different ways the process breaks down and how much room for improvement there is in the patient experience.

Examples of Room for Improvement

Preventable process breakdown

One year the lab failed to communicate the A1C test results to the endocrinologist on not one, but two occasions. A 50% failure rate, on a critical test that is fundamental to the process of care management for a diabetic patient. Without that data, the visit to the endocrinologist is almost pointless. I’ll add that her endocrinologist’s office is 60 miles away. That’s 120 miles round trip.  So figure 2.5 hours (conservatively) in travel time, plus the time for the visit itself. Rebecca needs to take at least a half-day off from school, and one of her parents needs to take same amount of time off from work. And all of that time was essentially wasted – twice – because of a preventable process breakdown.

Missed notifications

Another year we forgot to schedule the annual eye exam. Now, to be clear, that’s 100% my responsibility. But it’s remarkable that no one else involved in her care noticed that this step was missing. Not her PCP, who maintains the most comprehensive record of her medical condition. Not the endocrinologist, who initiated the care plan requiring an annual eye exam. Not the insurance company, which has a comprehensive diabetes care management program and full visibility into every single service, test, and device that we use. And not even the eye doctor (who, I should add, lost out on the revenue from that missed visit). Shouldn’t any of those parties have had a flag in their system that notified them that a critical piece of clinical data was missing? Answer: yes, they ALL should have. A useful contrast here is with the company that cleans the carpet in my house. If I’m overdue, by even a month, I get a phone call and a postcard from them.

“It’s the 21st century, so I really don’t understand what’s stopping my PCP from having my endocrinologist’s phone number in my medical file, or why my endocrinologist can’t call the lab where I always get my blood work. It’s very frustrating to hear, ‘Well, the lab hasn’t sent in your test results yet, so we can’t do X, Y, and Z.’ And it’s even more frustrating to be asked questions about my care that I don’t know the answer to, and then getting disappointed or exasperated looks when I say I don’t know. Just a few weeks ago, my endocrinologist asked when my last eye exam was. Honestly, I have no clue. I probably should know, but it’s been months since the last one; months that have been filled with the stress of schoolwork, my two jobs, and college applications. Wouldn’t it be easier, and more accurate, for a computer system to keep track of that? Imagine if my eye doctor just pinged my endocrinologist when I have an exam, and if the same system could flag both of them when the annual due date for the next exam approaches. That would be ten times easier for everyone, wouldn’t it?”

– Rebecca Willis, age 17.

Shared communication

Her endocrinologist and her PCP are not part of the same organization; they cannot directly access each other’s medical records, and communication between them varies from infrequent to non-existent. When she visits her PCP, they often want to know things like the date and result of her last A1C exam, which she often doesn’t remember. There is no reason why that information is not regularly and clearly communicated between providers.

There are many other examples I could cite, but hopefully a few things are clear.

First, the patient experience here is just substandard. Imagine how you would respond if these kinds of service failures happened routinely in any other business. You would likely complain, change providers, ask for (and expect) a refund, and you would almost certainly receive multiple apologies once such issues were raised. In health care, this is just par for the course. I’ve been working with health care organizations for two decades, and no one is ever surprised when I share stories like this. We just have learned to live with what, in any other field, would be considered a completely unacceptable level of service.

Second, the above stories should serve to completely disprove something I hear far too often (and which I addressed in a previous article): that improving the patient experience could somehow come at the expense of clinical quality. How ridiculous is that assertion? Look at every example cited above. It is inarguable that in each case, the breakdown in PX directly led to a lower quality clinical interaction. When properly defined, there is no question that patient experience is strongly, positively correlated with clinical quality.

Lastly, remember what I said earlier: T1D is about as evidence-based a medical condition as we have in 2016. Imagine what the analogous stories must be like for a patient whose condition has a less clear, or more complex, form of treatment. Or worse, for a patient who has multiple chronic conditions, and who is deeply reliant on exactly the kind of provider-to-provider and provider-to-patient communications that are fundamentally broken in the above examples.

If we’re going to make any progress in building a health care system that works, that gives real value for the cost, and that treats people like human beings instead of charts and medical records, we have to get the patient experience right. If your organization is on this journey, or would like to embark on it, please contact me. I’d love to be part of the conversation.

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