Modern healthcare is drowning in data, and burdened by quality, safety, financial, and operational metrics, but few relate directly to how patients experience their care. This has a direct bearing on patient safety and their perception of health outcomes. In a qualitative micro-study, we interviewed a small number of patients and caregivers about their experiences with radiological care, and what needs to be done to improve their care journey.
In our preprint paper “Giving Voice to Patients Through Interviews and Qualitative Analysis,” we laid out our research approach and analysis of how a small number of patients and caregivers experienced their radiology care journey.
The bottom line is that the experiences for these patients were less than “peachy” and instead were an almost endless parade of encounters with opaque, siloed, fragile, or broken processes. The big issue here is not about fine-grained clinical quality, but about how the bigger picture of the care journey is made up of disparate and disconnected care processes that might be perfect in isolation but collectively fail.
We would like to recognize Michelle Boyer, one of the study participants, who passed away as a result of cancer in the time since the conclusion of our interviews and publication. Michelle’s deep insights into the radiology patient journey were both highly informative and deeply touching, and we are grateful for her participation. We would also like to thank her parents who consented to this dedication and supported her engagement in our work.
Two epistemological points about our study.
- Some negativity stems from the study methodology: we specifically asked questions likely to bubble up negative experiences rather than positive. We asked patients about what surprised, frustrated, or confused them about their care. Although surprise may sometimes be a pleasant experience, in a healthcare context, this is seldom the case. Frustration and confusion, especially in healthcare, are unlikely to ever signify a positive outcome. This study was therefore bound to emphasize failures.
- This is a qualitative study, and does not pretend to predict what is typical, or what any other patient or caregiver is likely to experience when they go to a radiology department. This study is about what the participants of this micro-study described. The findings should serve as a source of considerations for radiology staff in their future engagements with patients. Sensitivity to these findings may improve the patient experience along the radiology journey.
What Did We Hear?
- Patients viewed their care journey in far broader terms than clinicians
- The end-to-end journey was littered with incomprehensible, opaque, fragile, and broken care processes
- The patient was often acting as the sole care-coordinator
- Facilities and processes were often not just deaf and blind, but actually resisted patient inputs and attempts to improve them
- If you want to know how well your processes are working, ask patients
Participants viewed their care journey as starting from the moment they perceived a care need and ending when care was rendered or the condition resolved and was paid for. The journey included whether the clinic hours lined up with patient’s work and personal schedules, whether there was affordable and accessible parking, and how easy it was to find the radiology department. It also included being well informed on what to expect, receiving results, getting a comprehensible bill, and being able to pay for services.
The participants reported that care processes were sometimes illogical, inscrutable, or didn’t start unless the patient gave it a kick. In some instances, processes just ended in mid-air, with things falling apart due to failures in activating the subsequent processes. In extreme cases, some processes required the patient to hand deliver the outputs of one specialty as the input to another. Should the patient not serve as the coordinator by actively forcing communication between specialties and departments, processes would implode, without the care team being alerted to the failure. Even when participants described opportunities for improvement (eg, establishing a calm and soothing environment and reconfiguring wait areas to address the variable needs of its patients), the facility would often just return to its previous malfunctioning state. Even when patients provided feedback and suggestions month after month, year after year, they kept seeing a stubborn regression to failure modes.
It was clear from the study that patients have a valuable and often untapped perspective that could be used to improve care. The study developed a foundational typology based on participant input regarding their experiences.
What Should We Do Differently?
Well, to start, we (as in the two researchers) would like to conduct more studies that raise the patient voice, and to construct a better method of measuring care quality that is grounded in how patients experience their care journeys. To avoid the risk that administrators will be averse to getting a negative paper like this one, the next study will be done using “Appreciative Inquiry” in order to have a more generative study outcome. It will not just focus on the deficits between expectations and outcomes, but rather identify best cases and a potential to exceed the goals.
Secondly, we (as in healthcare professionals) need to stop looking at the care process in terms of just the sequence of things we do in our specialty or unit, and look at care from the patient’s perspective. For the patient, the journey starts with some event that caused them to seek care and ends only when the desired care has been rendered and paid for. The gaps between processes are wreaking havoc on patients and their caregivers and are causing higher costs and less-than-favorable outcomes.
Thirdly, we (as in patients and caregivers) need to stop accepting these fragmented, fragile, and broken care processes in silence, and to be more vocal and specific about care that isn’t working for us. This may be a bit like asking the victim to give a bully some evaluation and feedback, but if patients and caregivers aren’t reaching out, then none of the things we described in the paper will improve.
- The patient being left alone in a dark examination room because they had been forgotten.
- The caregiver who has to sit apart from their distraught, wheelchair-bound child due to the configuration of the waiting room.
- The patient whose scan didn’t actually address their chief complaint but rather addressed factors for textbook conditions, instead of the rare condition for which the patient was to be seen.
- The patient who was trapped in an abusive relationship and is being seen as a result of the abuse but fails to elicit concern or an offer of social resources from the radiology team… because they are focused on following and completing the radiology processes and not the holistic needs of the patient.
None of these things will stop unless patients and caregivers reach out, perhaps participating in a study like this one, or speaking out on social media to get the attention of clinicians.