Shadowing for understanding the patient experience

Glòria Galvez

Reference: SoyArte

Who has not seen and cared for a patient who seems lost in the corridors of the hospital and asks for information from every person in a white coat that he comes across? It is likely that if a few days later you asked how it went, they would state that they are generally satisfied with the care, focusing their narrative on the most clinical part, or perhaps they could omit information of interest, giving the answers that he thought we expected to hear.

Questionnaires and focus groups, although the most widely used methods to measure and understand patient experience, are not always the most appropriate. Some studies conclude that what the patient remembers is different from what he experiences in real-time, depending on the time that has elapsed since he has received care until we ask him about his experience of it. (1)

Knowing the patient's experience is closely related to the Lean "Genchi Genbutsu" concept, which proposes "going and seeing" where things are happening to capture what does or does not add value. Along the same lines, Genba identifies the place where the action takes place. Using these Lean concepts, the Vall d'Hebron Hospital has begun to use the Shadowing patients(2) methodology to capture the patient's experience individually, in real-time, and at the different points where they receive care.

It has been a pilot project, intending to continue to use this methodology if the results are satisfactory. And the excellent results have encouraged us to think about other processes in which it would be appropriate to use it, such as in solid organ transplant patients or with oncohematology or neuro-rehabilitation problems.

Patients with Marfan syndrome who have developed heart disease were selected for the project. Through the shadowing technique, an observer accompanied the patient who had an outpatient visit as if it were her shadow and observed her as she progressed in each step of her journey, including those sections that professionals do not see because they are outside their area of direct responsibility (corridors, entrances, and exits of the centre, patient admission monitors...). In this way, she detected areas for improvement that would otherwise have been impossible to identify.

The observer did not participate in the care, although he did have informal conversations with the patient, so the patient did not perceive him as an intruder and showed his trust, sharing comments and sensations. He captured every detail of every interaction with the organization, identifying barriers the patient encountered, even those she wasn't aware of. In his field notebook he recorded the number of contacts and professionals with whom she interacted directly or indirectly, the time she needed to travel each section and to complete the entire route, how many and what kind of forms she was asked to fill out, the ease (or difficulty) that she had to find her way around the hospital, how many professionals she had to ask, the type of questions she asked the clinicians and if the answers were clear and given at the right time and place, if there was deliberation about the proposed treatment, or how was the treatment received.

In parallel, he mapped the flow of care with a spaghetti diagram (image illustrating the post), in which each step of the journey was recorded, from when the patient entered the centre until she left, making a quantitative and qualitative analysis of the different moments. In the quantitative document, each point of contact was documented, the time spent in each section and throughout the process, where the patient was going and the difficulty or ease she had in orienting hemself, how many professionals she interacted with and how many contacts she had with the organization. In the qualitative analysis, he evaluated the patient's experience and made a description of her comments and her emotional state. 

The result was a diagram that was difficult to interpret due to the tangled circuit since the patient had difficulty orienting herself, which led to continuous advances and setbacks along her route, as well as contacts with professionals who she asked for help to reach the destination. The numerous, and often unnecessary, trips caused nervousness and uncertainty in the patient, in addition to increasing the time to reach her destination and the number of people in the organization with whom she necessarily had to interact. (The average time from when the patients entered the hospital until they left the hospital was 2 hours and 30 minutes and they needed to contact an average of seven people.) This is the part of the process that in Lean language is called "waste" since that does not add value. I recommend using this type of graph and showing it to professionals in the results report, since the visual impact it causes, foments empathy with the patient.

A possible limitation to putting this methodology into practice is the Hawthorne effect in professionals, which happens when the participants in a study can alter their behaviour knowing that they are being observed. It has been advised to change the observer with each patient.

In his book, Change by Design, Tim Brown highlights a concept that can be applied to patient shadowing: person-centered design thinking – especially when it includes direct observation – captures spontaneous information that will lead to innovation that more accurately reflects patients' wishes. Shadowing takes Tim Brown's concept and takes it a step further, allowing us to move from perception to action.

Bibliography

1. Kjellsson G, Clarke P, Gerdtham UG. Forgetting to remember or remembering to forget: A study of the recall period length in health care survey questions. J Health Econ. 2014;35(1):34–46.

2. Gualandi R, Masella C, Viglione D, Tartaglini D. Exploring the hospital patient journey: What does the patient experience? PLOS ONE 2019;14(12): e0224899. https://doi.org/10.1371/journal.pone.0224899.