Guest blogger Cristin Lind is an e-caregiver and e-patient; her personal blog is called Durga’s Toolbox.
When trying to find a definition for what real patient- or family-centered care looks like, I can easily to get caught up in inspirational jargon. But a recent visit for my biannual mammogram (fun!) helped me give a very specific answer to the question, “What’s the difference between system-centered and patient-centered care?”
When I called to book my mammogram appointment, I was given an appointment time: 8:40 am. The person booking my appointment then told me that I needed to go to registration at 8:30 am before my appointment. I could not begin the mammogram without registering first.
As I held my pen hovering over my calendar to write down my appointment, I wondered: should I write down 8:40, my appointment time (and the time that the provider or clinic would be ready to see me), or 8:30, the time I should actually be there? This unreconciled tension reveals a leaning toward system-centeredness or practice-centeredness. A patient-centered system would have told me that my appointment was for 8:30 in registration, followed by a mammogram in radiology.
If an office visit requires critical paperwork or self-assessments to be completed in order to make the visit , that activity should be considered part of the visit. It’s that simple!
Cristin – what an example you’ve pointed out. The appointment time, in your example, is in fact the doctor’s appointment time.
If this were a design challenge, one would assume the doctor is the end user.
If it were a Lean study, one would conclude the doctor was the scarcest resource.
Your solution, to simply tell someone the correct time to arrive, changes that – the patient is then the user or most important resource. In fact, one could get clever with solutions like on-line registration and mobile check in … if the airlines can do it, right?
You’ve done a great job of highlighting a very simple but telling vestige of the parochial nature of healthcare.
Nick, you’ve hit on several great points. Love the idea for mobile/on-line registration (in my experience when I’ve done pre-check-in, I still have to repeat the entire process at the office), though I’d settle for check-in at the lobby coffee cart!
Another example – WIDEspread – is posting signs that are meaningful to people in the business and incomprehensible to suffering families who came for relief.
To use Susannah Fox’s term, #WhatIfHC had sticker dispensers all over hospitals saying “I don’t understand this” which patients were welcome to stick on anything they don’t like?
On my very first visit to Beth Israel Deaconess I was thrilled to see that the appointment letter had a gorgeous map of the facility with instructions to park in the Shapiro Garage. “Wonderful!” I thought. But when I got there, was there a SIGN saying where the Shapiro Garage is? No. They ASSUME you know where everything is.
That kind of thinking puts retail businesses OUT of business.
Being an e-patient (years before hearing of one), I wrote to the CEO, and got an immediate superb response from the responsible department.
And now, ten years later, there’s still no sign and the map hasn’t changed. CLEARLY not patient centered. :)
Dave, you are making me realize a phenomenon that I experience in our local public schools–often an apt analogy to health care in terms of its inherent system-centeredness. All communication is designed for the experienced insider. A school can have several doors, for example, with a sign that tells one to “Enter in the main office,” with no indication on which way the main entrance is located. Just one example of many, many. Thanks for pointing that out. The stickers would be a great way to bring awareness to that.
> All communication is designed for the experienced insider.
Here’s an even better example … it was in the back of my mind as I wrote my previous comment, and only came forth during dinner tonight. I blogged this one years ago but I don’t know where.
When I have a follow-up visit after a semi-annual CT, my hospital’s patient portal shows it as TWO OR THREE appointments – because 2 or 3 of THEIR people are involved. So their system is letting ME see THEIR WORLD.
Get that? For ME it’s one appointment – for them it’s 3 different people so 3 appointments.
Even better – more in line with your post – is the appointment for the CT itself. The portal shows the CT at 3 pm – but I need to show up at 1:30, and it doesn’t say that!
In their view, I’ve booked THEIR resource at 3 pm. In my world, I need to drink their goop an hour in advance, and I need to show up earlier to do paperwork. (Including repeating for the umpteenth time what medications I’m on, because they don’t trust their own database to have the right answers.) (And no, they can’t print out what they THINK, for me to approve or correct. Ugh.)
Anyway: in a patient centered operation, the portal would say WHEN I NEED TO BE THERE. Anything else is simply rude, IMO. “Inconsiderate,” as Mom used to say. “You just can’t be bothered, can you?”
Cristin, as Nick says, great example! And your solution really cuts through the confusion and focuses on what’s important for the patient.
Dave, when I used to do technical support, I had to learn what steps to include in my support memos and what to leave out. Some things seemed so obvious I didn’t even think of them as steps. It took real work to think through the process as others experience it to figure out what they would not know. I think a similar situation exists when people are giving directions or instructions in HC situations. They know where everything is and what everything means, and of course, their world is large and significant in their own minds, so they assume (implicitly) that the rest of the world knows what they know. You see this in the language used–patients ask what’s being done and are told they will have a CRP test, or that their BUN is a little high, or that they don’t need an MRI because their pain doesn’t exceed the threshold for that test. Except if you ask what those things mean, you either get patted on the head and told not to worry, or you get an equally opaque explanation that tells you nothing. It occurs to me that it might make an interesting project for PCORI funding to design, test, and produce a “plain English” translation dictionary for patients.
> It took real work to think through the process
> as others experience it to figure out what they would not know.
That’s brilliantly said, Nora. Can medicine manage that??
I can’t say I have seen a lot of it happening yet, at least around here in the hinterlands of Tucson, AZ. Now that you have asked, I think I will start keeping track of both opportunities for improvement and examples of the kind of change we seek. I’ll report back if and when my observations yield anything interesting.
I think medicine can manage this, Dave. Look at Bellin Health System–with a formalized discovery shopping program open to all patients (with renumeration!) or user-based experience work being done by Tony D (what’s his last name??–help). Anyway, the answer is that I think it’s already happening. Spread is the next step. Patient experience scores will drive the spread, as will conversations like this one!
Well of course they CAN manage this :-)…. otoh, shall we guess how many of America’s 4,000 hospitals operate like Bellin yet? I can’t wait!
So, yes, of course, they can.
But will they? How much does it cost them to change the way the system is organized? To us, it may look like a trivial change. To a system administrator, the cost probably looks beyond affordable, considering there is very little “validated” data to show the long term financial benefits of such a change. It’s going to be a long, arduous road!
Just remembered another example that really ticked me off a few years ago: my semi-annual CT scan and the follow-up visit.
Say the scan was scheduled for 3 pm. That’s the appointment reminder I got – because that’s when THEIR resource (the scanner) was reserved. Over time I learned that I have to show up 75-90 minutes before then – but when I asked why the appointment didn’t tell me when *I* should show up, they looked at me like I had 3 heads.
Not patient centered.
Then for my follow-up appointment to discuss the scan, I was to meet with three clinicians. So I got THREE appointment notices. For me it was one appointment; for them, the point was that I was booking three of THEIR resources.
Not patient centered.
See? To be patient centered, look at it from the patient’s point of view.
And when in doubt, ask the patients.
A couple of things to remember.
1. In most cases in the USA, healthcare is a business.
2. For a business, the customer is who pays.
3. Insurance companies pay.
A. The patient is not the customer. (This is why I support national healthcare systems: tax-funded healthcare in democracies offers a much more direct model for patient is customer, health is product.)
B. Given A, we need to think about what the hospital’s motivation is for its policies. At very nice hospitals, they may go against their economic interests (actual or perceived) and be patient-centric. In general, their motivation is likely profit maximization.
C. For a scarce resource, the profit maximizing strategy is often to make access complex: over-book, design the process to generate missed appointments, charge patients for missing, and use the resource at its capacity.
One of my rules of thumb is that when I see a system that doesn’t make sense, it’s probably because I don’t understand what that system was designed to do. For example, hospitals make more money when you see a hospitalist you’ve never seen before than when your own doctor sees you in the hospital. Why? “New patient” reimbursement. So if you are seeing a new doctor but your own regular doctor is down the hall, it’s not crazy. It makes sense based on criteria that weigh revenue over your health outcome.
Pete, I for one know that, though I know many of our visitors might not. Still, I maintain:
1. … the point of Cristin’s post is what’s PATIENT centered, not what’s customer-centered
2. … the ultimate stakeholder is the one whose carcass and hours are on the line
3. … as reimbursement and accreditation start to be tied to satisfaction, we shall see :)
Love this example! I recently got a call from an imaging facility to schedule an exam after they got the insurance company’s authorization. She politely asked what times would work best for me, and offered options. After I chose the one that worked best, and after it was confirmed, she then said I needed to be there a half hour early. Duh! If a half hour earlier had been the “best” time I would have asked for that time. In any case, having an appointment did nothing to help with the hour I spent waiting for the “scheduled” appointment since they put walk-ins ahead of me. The center’s needs came first and patients came in second, which is far too often the case.
So, Pat, you gonna write to the management, and maybe your local newspaper? :)
It occurrs to me that outpatient procedures or visits (not to mention inpatient stays) are often like business travel. Indeed, the entire process is System Specific. I know that from my work in health care for the past 40 years.
Your point was driven home to me in a personal way this morning: A proof point of how the simple things are often the ones that need the most attention to make the system patient-centric:
I have been at a major academic medical center since 8am with a patient who happens to be my 89 year old mother. We’d been told verbally, in writing and by robocall that the minor procedure was scheduled for 9am. She walked in here alert, smiling, capable, and competent. After being asked same questions by at least five different people – and learning we’d been given the wrong appointment time in person/mail/by robocall – she was incoherent, sobbing, yelling and screaming to get her out of here. 2.5 hrs later the procedure started.
It’s not good for the patient, not good medicine…..and it makes things more difficult for all staff in the procedure area.
Next step: a “what can we all do to make sure this doesn’t happen again” conversation with the admin after a very positive visit with the attending and unit staff.