Multiple Myeloma is a type of cancer that develops in bone marrow causing multiple lesions to form on the bones. It is a rare disease and mainly affects people over the age of 60.
Johnson and Johnson in Brazil approached Echos Brazil to help them create a better experience for patients with Multiple Myeloma. The team at Johnson and Johnson recommended we focus on nurses as a first step because the treatment was an intravenous medication. They wanted to help nurses manage the ongoing treatment of a very complicated disease.
We began our own research and focused on putting the patient at the center of our processes. That became the key to finding the solution moving forward. We interviewed doctors, nurses and quickly realised that when the patient is with the nurse it is not when the problem needs to be managed. In fact, this is when things are at their best for the patient. The problems happened after they received the treatment. We found that after they had the medication and went home, they started to have side effects.
This was where we needed to focus to create a better service experience. Our research focused on conducting participatory research with the patients. We stayed a full day with them to truly understand what their life was like.
Framing The Problem
After shadowing the patient’s daily life, we started to synthesise the information. We created a systems map for the stakeholders and began to have more clarity around this complex situation.
We saw that at the center of this systemic problem was weak communication. There was a consistent theme between all of the people in the system which was gaps or blockages in information. That led us to understand we needed to ensure that the communication was clear and consistent between the patients and all of the stakeholders in the system.
What We Learned
The fight to save life is comparable to winning a war. You can have the best strategies, weapons and soldiers to fight for your side. But if they do not have clear, consistent communication you will lose. In the fight to preserve life as long as possible against Multiple Myeloma communication is key.
Currently patients were losing the war because they were experiencing issues during the treatment that was not being conveyed to the doctor. For example, they would go to the clinic to receive the medication intravenously. It is a very strong medication and the dosage would often be lowered from the recommended dosage prescribed by the doctor. This is because the nurse could see right away if the patients had enough of the medication and they would stop the IV from administering the dosage. This was a common occurrence and often the full amount was never issued.
The follow up appointment was normally a few months later. The doctor would ask how they felt after treatment. The patient would often not remember what side effects they were having or not be aware that the medication had been reduced by the nurse. This also meant that this information was not communicated to the doctor. The same amount would be prescribed for the next treatment even through it should have been reduced.
This treatment is costly and can have bad side effects for the patient if they are given more than their body requires. Having a way to capture this information effectively at the time of treatment by the nurse and patient was a critical insight.
In the fight against cancer the patient was losing the war because the army of caregivers working with them did not have the right information. And in order to win, they needed better communication to solidify their strategy.
We understood that the patient rarely accurately explained their experiences because they forgot or were distracted by other ongoing health issues. They were not able to give enough information to the doctor.
The doctor was currently at the center of the treatment process, with all communication going through them. We changed that by creating a patient centric solution. We wanted all communication to flow out from the cancer patient to the various caregivers who needed it.
We ran codesign sessions in our innovation lab with specialists, caretakers, nurses and doctors. We worked together to create a solution to end the interrupted communication; the Active Patient Diary. We understood that the patients in the current system were very passive without much input into their treatment. They were mainly receiving information from others. But the dairy put them in control of not only their treatments but of their lives, increasing their life expectancy.
Most of the patients were elderly, we needed a low-tech option that was easy to use and needed no real explanation. The Active Patient Diary allowed them to take notes on everything that happened in their treatment. It contained prompts for the type of information that needed to be recorded. For example, what time did they take the medication? What did the nurse say? How many milligrams? What were the side effects? The patients were able to take the diary back to the hematologist to see exactly what happened over the course of their treatment.
It was a very simple solution that delivered a life changing impact. It allowed the communication to flow within the whole system. It helped the patient to actively take control of their disease, their quality of life and enhance the effectiveness of the medication. The solution won the third most innovative solution of Johnson and Johnson globally of that year. The Active Patient Diary won many other awards and it was widely adopted for other health care processes.
The most important part of this experience was it prompted Anvisa, the national health regulator in Brazil, to change the recommended dosage for patients with Multiple Myeloma from 5 milligrams to a lower dosage. Due to the thorough documentation of the patient’s dairies they were able to capture this data and ask for a different regulation on dosages.
Using design to solve complex problems achieves results that are difficult to predict. When you put people first it opens up possibilities that were previously unseen or misunderstood. Design thinking can unlock and break down huge systemic issues into personalised human solutions. We are always so inspired by not only what we learn when we listen deeply to others but also what we can achieve together when we do.
Be sure to check out our case study video here to learn more about our process and how design thinking was used!
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