American Sleep Apnea Association research app…
To begin with advances in both hardware and software now give patient groups practical ways to start encouraging people to share data for research. The first wave of patient groups that are using Apple’s Sleep Apnea ResearchKit to gather data through their app are beginning to reflect on the experience.
In the USA, for example, the American Sleep Apnea Association (ASAA) used ResearchKit for their Sleephealth study app, offering two linked benefits for patients. To clarify:
- a personalised tool designed to help people better understand the link between their sleep habits and general well-being
- an opportunity to share sleep data on a large scale.
In light of it being just over a year from launch, it has nearly 20,000 users. Whilst at its peak 47% of these opted in to take part in the sleep study.
Additionally, the high opt-in rate for the study may be due to three key factors:
- the value to the individual of using the app
- the simplicity of the study process
- growing confidence of what the study team call `citizen researchers’.
Giving patient participants what they need
So using an app to attract, recruit and retain people to a study means that it has to offer sustained benefits to a user.
Following this, The Association clearly lays out the benefits of the app. This is to the individual as a personalised sleep analysis tool, including:
- Tracking daily activity, bed times and rise times, overall sleep quantity, and daytime alertness.
- Gaining insight into personal sleep habits and sleep issues.
- Identifying links between your sleep quality and quantity and your other medical conditions.
- Identifying healthy changes to sleep practices to enhance health.
By using the benefits of the app to retain participants, the study can achieve its research goals:
“SleepHealth is the first ResearchKit study developed by an all-patient team of researchers and advocates, and we believe it has the potential to be the largest international sleep study ever. Our ultimate goal is to uncover patterns to advance good sleep practices, optimize health and predict who is at risk for sleep disorders or other medical conditions.”
– Adam Amdur, ASAA’s chief patient officer, co-investigator
Keeping the study process simple
With much of the data gathered automatically by the patients’ iPhone, Apple Watch or other wearable devices, the team have kept the time commitment from an individual to a minimum.
They suggest that overall, study participants need to spend less than 20 minutes a week carrying out any study tasks, particularly:
- health surveys
- activities related to sleepiness and alertness as they occur
- providing additional health data
- performing specific additional tasks while using their iPhone and/or Apple Watch.
Building the confidence of `citizen researchers’
One of the striking things about the people who download the app is that 65% have never taken part in medical studies before. However, following this study so many many opt-in to take part.
Following on, the patient association puts a lot of emphasis through its website and forum on the benefits of becoming what it calls `citizen researchers’. To explain:
- receiving support
- sharing insights
- helping direct future research
- improving their knowledge of what our medical system does and how it works.
“This really represents a new way of doing medical research…We are in the beginning stages of learning how to do it.
One of our goals is to spread the word about the importance of taking part in research…we want interested individuals to not just participant in a single research study, but to consider joining our community as well, and be part of the research movement.”
– Carl Stepnowsky, Chief Science Officer for the American Sleep Apnea Association