Requiring insights into Parkinson’s disease patient experience and journey

The question

Our client is the provider of a new implanted deep brain neurostimulator (DBS) for Parkinson disease patients, which lightens the patients symptoms – and thus delivers a better quality of life. But before entering the market, our client wanted to have a better understanding of the Parkinson disease patients’ experiences and journey.

The end goal

The goal of our research was to understand the complete patient journey (from referral to DBS follow up), the different treatment options, their decision criteria and which information sources they use. 

Our approach 

Our research was based on qualitative in-depth telephone interviews with Parkinson’s disease patients (both implanted and non-implanted) all over the US, Germany, Italy and Spain.

Our questionnaire centred around in-depth questions about the patients and how they experience life with Parkinson’s disease, in order to identify the different and most important patient touch points. We divided our questions into two phases.

Phase 1: we look at the patient flow and their involvement

  • What happens in the different stages of the illness?
  • Which main decision points take place?
  • Where do you find the information you need to be able to make decisions?
  • What are you looking for (and not finding)?
  • What can we do to inform you better
  • What does your family situation look like?
  • How do you experience your illness in your day-to-day life?
  • Are you in need of helping programs or supportive materials to guide you along?

Phase 2: we ask them how supportive materials can help

  • If we were to make supportive materials, what do they have to look like?
  • In what stage of the pathway would you be ready to accept these materials?
  • How long do you think it would take to accept other solutions?
  • When do you think you’ll be ready for a major solution such as the implementation of the stimulator? 

By asking these and many other questions, we learned about the very human experience of our patients – instead of only looking at their medical files. 

Our outcomes

We distilled our insights into three important key takeaways, who would later on become the basis of a new way of communicating with Parkinson disease patients.

  • Insight into the unique Parkinson’s disease patient pathway, as well as their key decision points.
  • Understanding of how patients get their information, as well as their involvement in treatment decision making.
  • Understanding how influential the patient is in the different steps of the decision making process. 

How they will help the customer

This new knowledge proved to be essential in order for the DBS to be accepted. Our results and insights made sure our client adapted the entire patient communication flow, which now responds to what the patient is feeling and experiencing at any given moment. 

Want to know more about your patients’ journey?

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