Challenge: Orphan Disease or Rare Disease is a condition that affects a small percentage of the nation’s  population. In the US, rare disease is any disease or conditions that affects fewer than 200,000 people in  the United States. The specific challenge I have encountered is that most solutions may not address the  needs of patients with rare disease. Specifically, I am interested in understanding the patients challenge  when they have a rare disease and I would like be study patients with Pulmonary Arterial Hypertension  (PAH). About 20% of patients with this disease require continuous infusion of medication 24x7x365 days  a year using through a small infusion pump. In these patients, they have about 2-3 hours maximum  where they can be without the drug after which the impact is fatal. But with the medication the patient  can lead a normal life. I am interested in creating App that will help the patient manage their disease. In  managing rare disease, in addition to the patients there are three other stakeholders who are also key in  managing the patient’s disease conditions –

(1) Healthcare Professionals: Physicians and Nurses  (2) Pharmaceutical companies who provide the medications and usually have a patient support

program

(3) Caregiver – usually someone in the patient’s family.

I am planning to use Visualization – specially Journey Mapping to understand the patients journey in  managing the disease and their various challenges as well as what they key issues are faced by  Healthcare professionals and Caregivers. For this project, I am not including the pharmaceutical  companies.

Selection: In order to understand the essential experiences of the 3 stakeholders – patients, healthcare  professionals and caregiver, I will use Journey mapping to understand each of the stakeholder  perspectives and explore what challenges are common and what challenges are specific to each  stakeholder

Journey mapping will help us visualize how each stakeholder’s experiences of managing the disease and  what a tool must do to address the core needs of each of them.

Application: I plan to conduct the journey mapping study by following the concepts of ethnographic  principles to understand the journey of each of the stakeholder as they manage the disease. I plan to  interview each of the stakeholder as well as spend time observing them in their environment to  understand what the current process is and get insights into their challenges. The objective is to arrive  at issues & concerns that are common for all stakeholders and issues/concerns that are unique to each  stakeholder. The objective is to catalog is information and to help design a tool that will integrate and  help all stakeholders to manage the disease.

Insight and Approach: The Design Thinking course has provided me with tools to approach a problem in  real life that I am facing. While various tools are available, I believe the use of Journey mapping will  provide insights into disease management journey of each stakeholder.

