What Patients Mean When They Talk About Access

I remember reviewing meeting minutes from a Patient and Family Advisory Council meeting.  A clinic manager was discussing some proposed changes to how some of their clinics would function.  The presentation covered changes in hours and shifting specialties around to improve flow and access.  The clinic manager was prepared for a robust discussion of why certain specialties were moving or how a provider would be able to practice at two different clinics at the same time.  But the issue that generated the most conversation was more basic.  The PFAC members did not understand what the manager meant by “access” and didn’t follow how this would improve patient experience.  Of all the words that can cause issues in communication, this was a surprise to the moderator and to the leaders reviewing these notes.  After all, in their eyes, it seemed obvious.

In the last essay, I discussed what healthcare means by “access” and why that is, at times, confusing to patients. In this essay, I will explore what patients often mean by the word and examine how health systems fail to deliver on the promise, either because of context or capacity.  This essay will explore two definitions patients tend to have for the word.  The first is specific and the second is more psychological. 

Access is consumer-oriented and multi-level

It is not surprising that people have far more experience with being a traditional consumer than they have in being a patient.  This means that people’s expectations about what constitutes access are informed by these customer interactions and healthcare usually suffers in comparison.  After all, if a patient can address a problem with an Amazon order at 2am with a chat-bot, why can’t healthcare be more responsive?  Oddly, this is also a space where hospitals have made dramatic improvements in access, but they have not translated into improved patient perceptions.

The biggest advance in access in my professional lifetime is the advent and expansion of the patient portal.  Since this interface is often built into a hospital system’s electronic health record by their vendor, I cannot imagine any system with an EHR not having a way for patients to directly access to their pertinent information.  Patients can access test results, review screening reports, schedule appointments and even communicate directly with their providers.  While there has been a learning curve for both patients and clinicians with this un-curated access to information, it has been a win for everyone.  As it becomes ubiquitous, though, it has also sowed some seeds for dissatisfaction. 

For example, patients like being able to email their providers directly through the portal.  But patients have started to complain that any question they ask in an email gets an automatic response that the patient should schedule an appointment.  What is the point, patients wonder, of allowing them to ask questions, if they cannot get answers?  Further, patients have expressed frustration that it can take a couple of days to get any response at all.  It took less than a decade for portals to go from revolutionary to insufficient.

The problem, from healthcare’s perspective, is that the portal technology streamlined the communication and information flow, but it also exposed the real reason why there are delays in access—context and capacity.  Simple questions often do not have simple answers.  That question about your unproductive cough could be anything from the trivial to the concerning.  So, without taking time to review your medical history and without the advantage of an actual physical exam, a clinician is loath to provide a diagnosis.  Especially a diagnosis in writing that is discoverable by a lawyer.  This is compounded by the fact that the clinician doesn’t know what the patient has done before emailing them.  Did they try over-the-counter remedies?  Has the patient emailed the doctor after three hours of coughing, three days, three weeks?  Without any context, the clinician is left in in unenviable position of giving obvious advice or requesting an office visit.¹

The second issue, capacity, affects the timeliness of a response.  Primary care doctors are likely to see twenty to even thirty patients a day, depending on the appointment length.  They won’t review patient emails until the end of the day and maybe not until the evening.  In fact, it is more likely that a nurse is reading it at the end of the day, relaying it to the provider and then responding.  In essence, the system does not have the capacity to dedicate resources to answer emails throughout the day. 

The reality is that responding to messages in the portal takes time away from billable hours.  As I discussed in the previous essay, if hospitals are about getting as many people as possible through the front door, then doctors, clinics, and health systems will see less efficacy in responding to emails than in maximizing the number of appointment slots. 

In fact, some health systems are now considering CHARGING patients for asking emailed questions.  Simple economics tells us that the easiest way to improve capacity and allow for thoughtful responses to patient questions is to turn that interaction into a revenue stream.  I also know how that will go over with patients.  A wonderful way to improve access instead leaves patients feel nickel-and-dimed while hospitals feel unappreciated as patients exploit a perceived access loophole by sending 1000-word essays looking for free advice instead of just booking an appointment.

Access is validation

In addition, while hospitals define access more globally, patients often define access more personally.  While there are times when patients will view access as a first-come, first-served proposition, patients generally understand that some version of triage does take place.  What is less obvious are the other limiting elements to the equation—context and capacity. 

Take an emergency department for example.  Anyone who has talked to ED patients knows that the wait in the waiting room is long and exacerbated by two things.  First, progress (the rate of people being taken back) is slow.  Second, when the doors open and another patient is summoned back, patients will form a snap opinion on that decision.  They will sometimes approach the registration desk, saying either “I got here before they did” or “I am certainly sicker than they are.”  On any other day, that patient may concede that they don’t know the reasons why that person went back before they themselves did.  But today is not a normal day for them.  They are at the emergency room.  Access here is as much about validation as it is speed.  The longer the patient waits, the more they feel that the hospital is not understanding or appreciating their condition and is judging their decision to come to the emergency department.² 

This may seem superficial or self-centered, but it is a human trait to want to have their existence or concern validated.  A patient decided to come to the emergency department and by not being seen in a timely manner, they feel like they are being judged on their own decision-making.  Access is not just about getting through the door; it is a perceived measure of worthiness. 

The problem with this definition of access from a hospital’s perspective is that the primary reasons for delays have less to do with validating an individual patient’s health problem and more to do with context and capacity.  A patient with the same generalized belly pain who arrives on a Tuesday afternoon versus a Friday night is likely to have two different experiences.  The pain is the same, but that pain needs to be triaged within the context of every other patient seeking care.    

The other is simply available space.  Even patients who will eventually be discharged from the emergency department will still be there for three or four hours as tests are performed and conclusions are made.  Those waiting to be admitted as an inpatient may wait far longer, and this is not even factoring in the nationwide emergency department boarding crisis.³ Further, since emergency departments need to keep excess capacity in case an ambulance arrives, ideally, they are not operating at 100% occupancy as a general rule. 

What is ironic, though, is the work that emergency departments have done to improve flow and efficiency that should improve access can actually work against patient perceptions of that access.  Here are two examples.

• Hiding ambulances.  Hospitals have restructured their ambulance bays to both ease traffic flow in the parking lot and to minimize the hub-bub and noise of an incoming ambulance.  This certainly reduces the anxiety of patients and family in the waiting room.  It also means that those in the waiting room are unaware of the demands on capacity and context that extend beyond fellow sufferers in the waiting room.
• Improving flow in the back-of-the-house.  Hospitals have dedicated significant effort to improve layout redesign, enclosed exam spaces and noise-dampening furniture to reduce the obvious falderol in the ED space.  For example, using a hub-and-spoke model with the nurses station and exam rooms as well as putting technology and pharmacy resources at both ends of the ED can reduce staff having to run back and forth.

I have toured emergency departments at full capacity, with two ambulances in the bay, and you could not tell that hell was indeed a-popping.  I am truly impressed with how they provided care without appearing stressed.  A patient coming into this space could be assured that there was no reason that they would not get the attention and proper care that they needed.   

And then I would talk to patients only to discover that all this also worked against patient perception of access.  A patient is left in the waiting room for three hours, finally comes to the back of the house and sees staff quietly talking to each other, or checking a computer screen, and they wonder why it took so long.  Everything done to reduce anxiety and improve efficiency is fantastic, but to a patient’s eyes, it is not visible.  Patients assume that the ED could be seeing more patients faster, if they all just picked up the pace.

These issues of context and capacity don’t just inform the emergency experience.  Delays in getting appointments with specialists, heck, even primary care doctors, suffer from these twin challenges.  I am the primary transport for a family member’s chemo treatment.  Two weeks ago, the day before she had her scheduled meeting with her oncologist, she got bumped to the next day and her appointment was changed to a meeting with the physician assistant.  The reason given was that they needed to give her appointment to another patient in more need of immediate consultation with the doctor.  This may be clinically true, but telling a patient who discovered three new lumps in her self-exam two days prior that their need was less urgent than someone else’s is a textbook example of “access as validation.”  Did she receive substandard care?  Was her treatment compromised?  No.  But she did feel less important in the eyes of the care team.

Reading this, one might suggest that the primary problem is that patients have outsized expectations for timely access to healthcare attention, but this misses the point.  Patients want to be heard and that their concerns matter.  They come into healthcare with a host of preconceived notions about how it works, from television shows and from other consumer interactions.  Hospitals have done fantastic work trying to make access as stress- and barrier-free as possible.  They have not, though, been able to address the key impediments that truly color a patient’s perception of access.  As a result, healthcare feels underappreciated even as patients feel unheard.

¹I am reminded of everyone’s hated question whenever they call IT.  “Did you reboot it?”  followed by the response, “OK, well reboot it again.”  It isn’t 1994.  We all know that we should try to reboot.  Your question insults my intelligence and experience.

²In fact, this calculus impacts other experiences as well, like waiting for a clinic appointment or a referral to a specialist.  Or delays in getting various screenings.  Even the decision to admit an ED patient as opposed to discharging them home.

³For those not familiar with the term “emergency room boarding,” it is when a patient is deemed worthy of admittance to the hospital, but for whom there are no inpatient beds available.  So, instead, the patient receives inpatient care while they occupy a bed in the emergency room.  Not only does this reduce the available beds in the emergency room, it also taxes staff resources, as nurses are providing ED care to some patients and inpatient care to others.