INVIGORATE | UX RESEARCH STUDY

A research study designed to ensure that members of the Parkinson’s community have access to educational resources that are right for them.

Summary

 

Responsibilities

 

approach

 

Accomplishments

 

objectives

 

participants

 

methodology

 

key questions

 

Process

 

Synthesis

 

field research Findings & client presentation

UX Research project for Invigorate: research study designed to explore the needs of the Parkinson’s community by interviewing patients, caregivers, and medical practitioners to reimagine how we can better support Parkinson’s patients. Work was done in partnership with UX researcher from Argo Design.


 

UX Research Lead:

  • Design a UX Research plan for the day-to-day direction of interviews, locations, goals, and focus points.

  • Schedule interviews, design interview guides, conduct interviews, outline timelines, take interview notes, synthesize notes, document each interview, and synthesize all data into a report for the client.

  • Develop research models, deliverables, and use storytelling techniques to share findings with the client.


This research took us into patients’ homes where they were able to share their experience and knowledge with us. We met with medical professionals to better understand the professional perspective and explored the current state of digital resources available to Parkinson’s patients.

This methodology allows us to explore what it means to experience Parkinson’s - learning from those who understand it most. The findings in this deck are our articulations of that understanding and is by no means authoritative. Many of our findings veer closer to opinion rather than fact and should be treated as such. There are plenty of other resources you can turn to for fact—these findings are meant to inspire and provoke new ideas and provide guidance as we move forward.


In six weeks, collected and synthesized data based on 10 users within the Parkinson's disease community to distill the needs of patients and caregivers. Interviewed, synthesized, sorted, and prioritized key findings to present to Invigorate’s CEO. This research project is the basis for ongoing work to ensure Invigorate’s business goals meet the company’s audience.


Build a comprehensive understanding of the behavior and goals of current and prospective users of Invigorate by collecting stories, characterizing individual habits, needs, and motivations of current and prospective users.

  • Identify the biggest problems and gaps in knowledge patients and caregivers experience living with Parkinson’s Disease and understanding the diagnosis/conditions/lifestyle needs.

  • Establish a foundation of findings, insights, and frameworks that will guide and inform the development of communication platforms that ensure access to Invigorate’s educational resources.

  • Assess the viability and potential of current and future digital tools designed to deliver information to users, collect data on what users want to learn about, and gather insight on what user’s think is important to slow the progression of Parkinson’s Disease.

  • Reinforce our in-field findings with quantitative data gathered via Invigorate’s current digital platform, surveys, and other means. This data will provide us with depth and detail as we gather stories, observations, and individualized insight via our qualitative research.


Research Participants:

Patients who range in:

  • their PD journey (immediately post-dx, within the first year, 1-3 years after diagnosis, and 3-5 years post diagnosis)

  • gender

  • age

  • mobile/tech use

  • ethnicity and/or language

  • family/friend-support status - social support, in solitude, etc.

Caregivers:

  • # of years with experience as a caregiver for PD patients

  • amount of time with current PD patient

Medical Practitioners:

  • # of years in profession

  • # of patients work with

  • any specialization within PD that is helpful to be aware of


In-depth contextual interviews:

Schedule 5-10 in-depth interviews with patients, caregivers, and doctors in their homes, at service centers, and in the doctor’s office to best understand, discuss, and observe their individual behaviors. Seek variety in age, progression in PD journey, and years working with and supporting PD patients.

Home, service centers, support groups & intercepts

Visit centers where patients live, places of service, and support groups to understand the larger context of how PD patients live, heal, and get information concerning their treatment and medical needs. Additionally, each center will inform how information is being shared across all three roles (patient, caregiver, and medical practitioner). In each location, I will conduct abridged discussions.

Ad hoc interviews & intercepts

To gain perspective and breadth from in-depth interviews, the team will engage in intercept interviews at service centers and in the home (if additional family members/friends are present) to understand the variance in behavior between and across contexts. We will utilize a subset of research protocol and pull questions from the in-depth interview guide during these sessions.

Patient Interview Guide

Caregiver Interview Guide

Medical Practitioner Interview Guide


Knowledge:

  • What are the biggest obstacles patients and caregivers experience in clearly understanding medical diagnosis, therapy, and needs?

  • What do patients have to know & what do they want to learn? (ex: lifestyle, medical needs, community events)?

  • What are the challenges doctors have to ensure patients and caregivers understand treatment needs, lifestyle shifts, and ways to self-educate during the progression of Parkinson’s Disease?

  • What digital platforms and product tools are most helpful to support patients and caregivers & are there major factors that prohibit access to educational resources?

Journey:

  • What information/resources are the most valuable, timely, and patient-friendly during each stage of the PD journey (immediately post-dx, within the first year, 1-3 years after diagnosis, and 3-5 years post diagnosis)?

Language:

  • What are the most effective means to share information regarding living with Parkinson’s Disease? (ex: blogs, podcasts, in-person conversations, and/or group meetings)

  • What is the best language, terminology, and framing (positive to objective) to ensure patients and caregivers feel supported with wellness?

Check out the full research plan:

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Invigorate | UX

Research Plan


Understanding the opportunity:

I conducted five in-field interviews with caregivers, four interview with patients, and two interviews with medical practitioners. Caregivers’ experience ranges from five to twenty-five years, patients’ Parkinson’s journey ranges from two to 25 years (since diagnosis), and medical practitioners who specialize in movement disorders - specifically Parkinson’s.

 


Key Findings:

  • Non-Linear Journey

  • Multi-faceted condition

  • There is a key life-transition point between pre & post diagnosis

  • Life is different- but, also, the same

  • Patients need an individual approach to care

  • Guidance is needed for targeted care based on the individual

  • Parkinson’s patients and caregivers need community

  • Language used to describe Parkinson’s must be inclusive

  • Caregivers must also receive support

 

Next Steps

 

1. Current Site & Program Evaluation

  • Use the insights explored here as a series of lens to evaluate the current Invigorate program, identifying opportunities and areas for improvement.

  • Make recommendations based of the findings from Google Analytics.

2. Ideation Workshop

  • Leverage our community of designers and thinkers in an evening of ideation generation and brainstorming. Bring together a diverse team that will allow us to explore the future of Invigorate in a broad and open way.

3. Future Exploration

  • Develop rough concepts to explore the future of invigorate as a website, service, and beyond.

  • Concepts will be generated in the workshop described above.

 
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If you know the right things to do you can have a good high-quality life for a long-long time.
— caregiver