It become quite clear we needed to understand the needs, wants, abilities, behaviors and attitudes of our all potential users better. we decided it would be best if we worked to gain that knowledge through in-depth user interviews. I trained the assistant researchers via weekly workshops, they were undergraduate students from a variety of backgrounds, on how to conduct, clean, and analyze qualitative data from interviews.  We used a generative research technique to explore the existing practices of people living with Parkinson's to track their symptoms, understand their technological ability, and to better understand the challenges and needs of people living with Parkinson's, their caregivers, and their healthcare professionals. 

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I created an interview screener and a custom semi-structured question guide for each user type, that were improved as needed as interviews were conducted.  Conducting 1 on 1 interviews with users allowed us to ask open-ended questions to gain a better understanding of the user, fostered empathy when discussing some of the more sensitive health experiences with the participants and enabled us to dig deeper when needed to fully answer our objectives.

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I created a list of willing future participants for research to simplify the recruiting process for future usability testing moving forward.  I also created processes and templates for recruitment, scheduling, and payment of the participants to save time.  I found programs like Calendly that would help with group scheduling and created spreadsheets to track participants and their compensation.

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Via Zoom, due to COVID-19 restrictions, 38 remote interviews were conducted, lasting between 25 and 75 minutes: 26 people living with Parkinson's, 7 of their caregivers, and 5 health professionals.  Zoom recorded and transcribed the sessions. The research assistants then verified accuracy of the transcripts and cleaned transcripts to prepare them for data analysis.  An affinity doc was created for each participant and imported onto virtual sticky notes in LucidCharts.  The team affinity mapped the findings together remotely and gained a better picture of the needs of potential users of the mobile app. 

 

PROBLEMS THAT AROSE AND LESSONS LEARNED:

COVID-19 restrictions enacted by the university and the study's IRB status limited my methods for recruiting and research to virtual only. This impacted my results as only those with Internet access and who were comfortable to participate in a Zoom interview participated.

 

Another stipulation of the IRB exemption status was the project was not allowed to use university medical professionals or participants so I recruited from external sources: organizations, clubs, support groups, etc.  This made finding health professionals to participate extremely difficult. I did find a work around to contacting those working at the university, if I could find a non-university facility that they practiced at I could contact them through those means.

 

The recruitment strategy expanded to nationwide to accommodate the IRB stipulations and I had participants from every region in the country, including Alaska.  I feel if we had access to the university database the participants would have been from predominately Michigan, instead it became a national survey.

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Another challenge was I leading a team of undergraduate students who had never conducted qualitative research before. To provide the interdisciplinary team with the skills to perform the research, data preparation, and analysis I held weekly workshops to train them through assigned readings, discussion, and hands on experiences. 

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The original timeline to train the team, conduct and analysis the data was 9 months  due to only having part time team members but approximately 6 weeks in was shortened to 3 months due to budget constraints.  We hired additional team members and shifted the web developer to help with the research.  We completed the research but with fewer caregiver and health professional participants.