Where's the GPS? Helping Patients Navigate Complex Care

I want you to imagine a scenario with me: you're driving and trying to get to an important event, one that could be life-altering. You hit a fork in the road and have to choose left or right; this would usually be an easy decision... except you don't have a GPS. All you have is a giant map torn in half, with no roads or signs, and everything is in Wingdings. You have no idea if left will take you where you want to go or land your car in a ditch.

You're lost, anxious, and utterly alone in finding your way. This is how it feels for people to make decisions about their care without any education, support, navigation, or resources.

(All rights to this clip belong to the Jim Henson company)

Service design plays a huge role in supporting people making these decisions about things that they are not familiar with, especially when it comes to choices about their health. In my experience, a human-centered approach to supporting patients looks like developing patient-friendly resources, enabling shared decision-making between patients and providers, designing straightforward pathways, and reducing burden where possible.

Designing for patient support can look different depending on what your patient population needs. Patients deciding between their treatment options for non-muscle invasive bladder cancer will be different than understanding how to advocate for themselves if they are commonly dismissed. Here are some human-centered approaches to patient support:

1. Creating resources patients need

   Patients are oftentimes not experts on the inner dynamics of their care teams, the choices they have between different treatments/therapeutics, or even how their primary treatment connects to other aspects of their care. What they are experts in is their experiences, feelings, and needs.

   
   

   Speaking to patients who have been through different systems or treatments about what they wish they had is an incredibly useful method for creating better tools for future patients. Resources that are built with patient needs in mind help build confidence and trust not only with their care team but also empower them to make choices in their care.

   
   

   Here is an amazing example of a patient-centric resource for helping patients make informed treatment decisions from Pfizer. Its goal is to generate a conversation about all aspects of a treatment choice between a patient and their care provider by walking through risks, benefits, and where information comes from all in a way that is easy for patients to understand.
   

2. Demystifying the healthcare system

   Grey's Anatomy and similar TV shows have done an amazing job at creating public interest in hospital dynamics, but they have also created a false reality of the healthcare system. For example, lots of patients believe that they have hours to talk to their doctor at their first appointment. Unfortunately, the reality is our providers exist in a system that is severely under strain so they might only have 15 minutes maximum with their patient at an initial appointment.

   
   

   The key word here is to not only talk to patients about what they wish they knew but also talk to providers and healthcare professionals about what they wish patients knew. Finding the intersection between the need and gaps in understanding will help patients come to appointments aware and prepared. Developing education rooted in these realities will set healthy expectations, mitigate anxiety and disappointment, and allow patients to feel more aware of a system that they largely might not understand.

   
   

   A great example of this is BC Cancer's "Your First Visit" site. This lays out what patients need to know ahead of their first visit to a BC Cancer facility.  Newly diagnosed patients can easily navigate the sections and find details clearly such as when to eat, how to get access to an interpreter, note-taking during an appointment, and more!
   

3. Design intuitive systems and frictionless moments

   As service designers, we don't often get to design healthcare systems from the ground up; often we come into fractured systems and try to fix little aspects of the patient journey here or there until overall things are better. 

   
   

   A great example of a system that needs support is the waiting room experience. This is a space full of anxiety and uncertainty. If we were to redesign a waiting room, we would want to understand what we can do to create a less anxious space without adding a burden on the staff and providers. This looks like hosting focus groups to validate ideas with patients but meeting with care teams to ensure that the solution is feasible. For example, one thing walk-in patients commonly have expressed frustration with is wait times at walk-in clinics, so a solution that could be tested is a system where patients are put in a virtual queue so they can see in real-time their status. This would give patients a sense of comfort in knowing exactly how long they will have to wait and reduce the burden of administration staff having to educate potentially disgruntled patients on wait times on top of all their other necessary tasks.  

   
   

   The Kaiser Permanente - Northern California Integrated Care Model is a gold-star example of a system that is integrated and intuitive for patients and providers. They addressed the gaps in patients being treated holistically in one space and then ensured that it was easily navigated by patients and providers. "Kaiser Permanente combines health plan coverage with coordinated medical services to provide high-quality, affordable, and seamless health care to our patients and the communities we serve." (Excerpt from Kaiser Permanente's "About us" page)

I want you to come back to the drive we were mentally on at the beginning. I want you to imagine how different it would be to have a personalized map, in your language, with clear signs and directions. You'd feel confident and maybe even safe, right? Service design helps give patients that feeling. The whole point is to use their experiences to try to make a difficult time or system a little easier to navigate.

(All rights to this clip belong to the Jim Henson company)

Thank you!

Caleigh

How many times can I say "patient" in a blog post? The answer is 33, apparently.

Disclaimer:

AI was not used in the making of this post; I used Grammarly for grammatical and spelling corrections.