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Ella wasn’t a healthy baby like Oliver had been. After a couple of weeks at home, she developed jaundice, and she was fussy and hungry and wasn’t gaining weight. I kept hearing the words 'failure to thrive and 'developmental delays' from the doctors. Her blood tests were abnormal – her bilirubin, cholesterol, and other liver numbers were high. She was constantly in and out of the hospital, and we rapidly learned all the medical language that went along with having a very sick kid with liver disease.

Excerpt from a Patient Journey Module

Some of life sciences’ most impactful and dynamic training deliverables focus on the patient (patient journeys, patient cases, museum walks). These pieces can help learners have and convey empathy for the burden of disease, discuss the limits and possibilities of treatment, perceive more of the hidden consequences of a specific disease, and learn about patient and caregiver “wish lists” for managing their disease — ultimately helping learners better position treatments to HCPs.

Empathy

“No matter what I do, I have itchy patches around my eyes and a visible dark, scaly area on my neck. I’ve also developed small painfully inflamed bumps on my underarms that flare up after hard workouts at the gym. When I see people in person, the marks on my face and hands are impossible to hide. I’m even ashamed of the patches around my family and partner, and I feel ugly and unattractive. But the worst part is the itching and constant urge to scratch. On the worst nights, I can’t sleep because of the itching, so I’m foggy and irritable the next day at work.”

Advocating for patients and families is extremely important. Representatives can become the voice of the patient or their caregivers in some situations or help them navigate the complexities of healthcare systems. Before they can do that effectively, they must understand more about the challenges that the patient and their caregivers face and how current treatments work while also understanding some of the limitations of those treatments.

A representative gains more empathy for a person when you hear them describe in the context of their own family or their children:

  • What might they think when they receive the diagnosis?
  • What obstacles and difficulties do they face when trying to start therapy?
  • What is their day-to-day life like with their disease?
  • What are their most significant challenges in dealing with their disease?
  • What are their hopes and fears around the disease and its treatment?

Limits & Possibilities

“The medications had already helped me get back to normal life, where I could be energetic and engaged with my students and get back to cooking, which I love. But then I collapsed at school one day. I wasn’t feeling well that morning; a little short of breath, dragging around like I was wearing lead weights. I had just managed to finish the class before lunch when my legs folded like wet paper. I managed not to hit my head, but I couldn’t get up and was having trouble catching my breath. One of the kids ran next door to get one of my fellow teachers, who called an ambulance.”

All treatments have their limits, and there are always possibilities for improvements. Limits could include dosing or administration challenges, short- or long-term side effects, or negative impacts on lifestyle. Patient journeys let you explore these limitations in an open-ended Some questions journeys can explore include:

  • What are the current treatments?
  • What challenges are associated with those treatments?
  • Are there gaps in treatment?
  • Are there specific patient types for whom the current treatments are of limited use?

On the flip side, by discussing the inadequacies of current treatments, your team is better equipped to highlight the positives in new ones.

Hidden Consequences

I was so angry when I found out. Chess was being bullied by some other kids for his size and inability to participate in sports. His middle school principal wasn’t helpful – he just said that “all kids this age get bullied” and that Chess needed to grow a thicker skin. Mom and I talked about what we could afford to do to find another school since neither of us could bear to see how these kids were tearing him down. We finally found a small private school willing to provide not only accommodations for his short size but also financial aid.

Even the most straightforward clinical presentations of diseases hide the everyday challenges of managing the symptoms or treatment. Some could include:

  • What challenges do symptoms present to patients and caregivers?
  • Are treatments oral or home injections, or does the patient need to go to an infusion center?
  • How frequently does the patient need monitoring, and what type is required?
  • Does the patient require nutritional support?
  • Are patients subject to stigma or bullying due to their disease?
  • What medical devices do the patients need for their care?
  • What lifestyle or environmental changes need to be made?

Wish Lists

“I wish I had a treatment that controlled the itching better…”
“If only there were any kind of treatment for my cancer…”
“I’d love to not have to go for weekly infusions – couldn’t I do injections at home…?”

In a patient journey, the patient can express what they wish existed. This is a chance to highlight how they’d like to see their day-to-day quality of life improve. It could include reduced reliance on family help, not traveling for treatments, or not having others stare at you in public.

At baseline, 53% of physicians reported that their empathy for patients had declined over the past several years; whereas only 33% reported an increase in empathy (13% reported no change).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3445669/

The Disease States Where the Patient Focus Shines

Rare Diseases.

A patient journey can help paint the picture of a disease that the learner may not have heard of before and also help them understand that there may be enormous life consequences and no other hope for these patients.

01

Mental Health & Other Invisible Disabilities.

We can empathize more easily with those who show physical signs of disease.  Mental health is much harder to visualize and understand, and invisible physical disabilities, such as fibromyalgia or multiple sclerosis, are frequently dismissed.

02

Stigmatized.

With HIV/AIDS and other sexually transmitted diseases, or diseases stigmatized by poor public health communication, like monkeypox, the patient may feel embarrassed or ashamed and unwilling to talk openly about what they are experiencing.

03

Complex Diagnosis & Diagnostic.

In many cases of long-term diseases like cancer, the patient journey is prolonged, riddled with patient and family confusion and fear, as well as treatment shifts and evolution.

04

I'd like to learn more about your patient focus deliverables!

eTutorial Example

Make it Cinematic

Utilize multiple narrators to keep things dynamic and show the entire patient story.
2

A Picture is Worth 1,000 words

The photos should show a patient in various poses, clothes, and places. Don't recycle the same stock photos.
3

Doc-2-Doc

Use a doctor-to-doctor discussion if sharing the patient voice is not feasible, for instance, when the patient is a child.
Patient Journey eTutorial

Museum Walk

Workshop Audio Museum Walkthrough

A window into the patient's life

Step into their shoes using audio or augmented reality.
2

Make it an Experience

The museum walk makes the patient journey experiential by adding the voice of the patient.
3

Not Just for Sales

The museum walk can be deployed at a national sales meeting (NSM) or the main lobby of HQ for all employees to engage.

Podcasts & Case Dialogues

Perfect for Microlearning

Short MP3s or MP4s with light visuals are perfect for sharing the patient perspective in pulsed-ready format.
2

Actual Conversations

Audio files can feature actual conversations when combined with a service like Verilogue.
3

Snippet of Time

Excellent deliverable when you want to focus on a specific and time-bound event
Podcast and Podvideo Patient Case

Interactive Patient Cases

Patient Cases eTool

Story Still Matters

Interactive patient cases can provide details about a patient's life and emotional state.
2

Diagnosis & Treatment

Dive deeper into when the patient learned about their disease and how they were treated.
3

History Matters

See the entire patient's complete history from a personal and medical perspective.