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Patient Experience & Program Study

June 2nd, 2024

What is the Patient Experience & Program Study and why is Narcolepsy Network undertaking this work?

The goal of the Patient Experience & Program Study is to understand both met and unmet program needs as it relates to your experience. As people with Narcolepsy or Idiopathic Hypersomnia, you come from many different backgrounds. Your experience will be different from others. Your needs vary considerably depending on where you are in your journey, your age, where you live, your culture, and relationships. The findings and aggregated themes of the study will be reflected in a final Public Summary Report.

As a patient-led organization, we believe it is our responsibility to listen and to evolve through your voices. Since 1986, Narcolepsy Network has run advocacy, support, and education programs that have been instrumental in building the sleep advocacy community we see today. Our founders were 11 women from across the country who advocated for the Americans with Disabilities Act, participated in the formation of the National Center for Sleep Research at the National Institute of Health (NIH), ran local support groups, and built a widely renowned and attended national conference. 


Why Now?

The Narcolepsy and Idiopathic Hypersomnia community is now in the spotlight and benefitting from advancements in clinical research and increase in disease awareness. Additionally, pharmaceutical companies are expanding investments in awareness, support, and education programs across multiple sleep advocacy organizations. 

Due to tremendous growth in this community, we want to know how existing programs help you or what others might be offered to better serve you. Your opinions matter. Where are you in your journey with narcolepsy or idiopathic hypersomnia? What kinds of education, support, or advocacy programs help you? Are there other programs that are needed to best serve you?


How will the Study be conducted?

An independent, third party consulting firm is leading the Study and all data collected will be anonymized. The first phase will involve collecting qualitative data, through individual confidential interviews and focus groups, which will be conducted by the third party consulting firm. For those interested in being considered for participation, we ask that you complete a brief, confidential screening form. This form will be distributed across emails, social media platforms, and on our website. Volunteers will be selected for individual interviews and focus groups based on a range of factors: age, cultural and geographic diversity, diagnostic types, and experience with a variety of different research, patient support, education, awareness, and advocacy programs. A selection of health care providers (HCPs) will also be interviewed.

The second phase is open to everyone, and will involve an online survey collecting anonymized feedback regarding the themes that have been uncovered in the individual interviews and focus groups. 

A Community Advisory Committee is advising on the framework and protocols for the Study, and will provide feedback regarding the initial themes that are uncovered before a final report is written. Committee members include people with Narcolepsy, Idiopathic Hypersomnia, their supporters, and medical professionals.


How will the findings be shared?

Findings will be anonymized and themes aggregated into a final Public Summary Report that will offer perspective on what ways existing programs meet needs, may not meet needs, or where new programs need to be developed. We will share the report and its findings widely. 


Scan this QR code to be considered for participation:

Please note participation in this Study is voluntary in order to support the Narcolepsy and Idiopathic Hypersomnia community, and does not include an honorarium.

You can also click here.

How is this Study being supported?

We are grateful to our industry sponsors* who recognize the importance of this grassroots, patient and supporter-led Patient Experience & Program Study.

*Note: Sponsors are not involved in developing Study scope, format, or protocols, and will not have access to confidential data or patient information.

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Date Created: June 2nd, 2024
Last Updated: June 12th, 2024