Strategic Position

Problem

Young people are not given proper information catered to their individual needs in hospitals when dealing with rare diseases such as autoimmunity and neurological disorders.

Solution

To create an information exchange portal where young people can engage with other patients to gather data about their health when dealing with a rare disease.

Research

Scope

The scope is going to narrow patient interviews to young adults who are dealing with autoimmune or neurological disease in Canada and the United States.

Stakeholder Interviewss

In the process of interviewing Doctors dealing with neuromuscular disorders, however, this is on hold because of the pandemic.

Ethnographic Research

Performed a qualitative research study to examine how young people feel their specific needs are being taken care of when diagnosed with rare diseases. I was diagnosed with Myasthenia Gravis in 2018 and spent several years in hospitals learning about successes and pain points in hospital design. I wanted to further my research by interviewing other patients who were dealing with autoimmune disease to study if they experienced similar problems and concerns.

Design Research Goals

  1. Learn about social, technical and environmental constraints that affect behavior among patients dealing with rare disease
  2. Examine Context
  3. Find themes, pain points and success from data

Research Ethics

All interviews conformed to the Canadian Research Ethics Board (REB) on research studies.

  1. concern for welfare
  2. justice for individuals
  3. Respect for Personas

ANALYSIS

This research study is ongoing to increase the subject sample to include a wide variety of young adults from various social-economic backgrounds. Given the large scope, I am implementing data synthesis and implementation phases, but this will be an iterative process over the next year.

PERSONAS

Cavil

Cavil is a young adult who was diagnosed with multiple sclerosis several years ago. He is managing his disease however he is finding it hard to get the proper information from his doctors. He wants to experiment with different types of treatments but his doctor does not know about different options outside traditional medicine. Cavil also wants to find an external support network to help him mentally deal with the disease.

Goals

  1. Find alternative treatments
  2. Find other young people with his disease
  3. Continue to work as a freelance sculpture

Anders

Anders has been dealing with an unknown illness for over a year. He has been in and out of hospitals to no avail, causing tremendous stress in his life. He is desperate to find a solution and is losing hope. He needs to find a solution to his unknown illness.

Goals

  1. Get a proper diagnosis
  2. Find treatment options
  3. Finish high school

SYNTHESIS

Prototype A: Kitchen Sink Strategy Zine

LIVE PROTOTYPE

Information Architecture and UX Directed at Young People

The first prototype was designed as a wellness “Zine” directed at young people using all scientifically based resources combining allopathic and naturopathic medicines for optimal wellness allowing users to find the best treatment options.

Requirements

  1. Cross-platform access
  2. Latest treatment (Information Object)
  3. Naturopathic (Information Object)
  4. Allopathic (Information Object)
  5. Targeted data at young people
  6. Future Treatment Development
  7. Community Forum
  8. Verbal Control
  9. Disability Control

Prototype B: Patient Information App Network

Patient Run Autoimmunity Treatment App

The second phase of development is going to iterate how to empower patients with rare diseases by allowing them to share treatments and discuss symptoms. This idea was developed by my own experiences in which I was given life-saving information from an autoimmune patient in Florida (Facebook) who helped me recover from my disease.