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Sarphati Informed Consent App developing an app together with parents
Joy Hall1,2, Luuk Haring1,2, Anton Janssen1,2, Joanne Ujčič-Voortman1,2, Marleen Johannes2,3, Angelina Hammond1,2, Thijs Houtenbos4, Maarten van Haagen5, Arnoud Verhoeff1,2
1. Public Health Service Amsterdam, Dept. of Epidemiology, Health Promotion & Care Innovation, Amsterdam, the Netherlands 2. Sarphati Amsterdam, research for healthy living, Amsterdam, the Netherlands 3. Public Health Service Amsterdam, Dept. of Youth Health Care, Amsterdam, the Netherlands 4. Public Health Service Amsterdam, Dept. ITforCare, Amsterdam, the Netherlands 5. Public Health Service Amsterdam, Dept. Zorgspecifieke bedrijfsvoering, Amsterdam, the Netherlands.
In the development of the Sarphati App we involved both parents and Youth Health Care professionals to repeatedly
test the app. We focused on both the technical performance as well as the app’s content, usability and look & feel.
Involving parents in each phase of the development was crucial and extremely valuable. Their feedback helped to
improve the app and has resulted in an easy-to-use and comprehensive app for a diverse group of parents.
Step by step development of the Sarphati App
From October 2018 parents can use the Sarphati App to give consent to participate
in the Sarphati Cohort. We started our phased recruitment approach at two Parent
and Child Team centers, which we will monthly scale to new centers. We combine a
face to face approach with the launch of our communication campaign that is
consistent with the look & feel of the Sarphati App.
Inviting parents to take part!
Background & scope The Sarphati App allows us to
inform parents about the aim of
the Sarphati Cohort and to
collect consent for
participation. The Sarphati
Cohort is a multi-ethnic
dynamic cohort study in
Amsterdam. The use of an
animated video and
complimentary text makes the
information accessible for
parents with various social and
cultural backgrounds. With
these efforts we aim to enable
parents to make an informed
decision.
The Sarphati App has been
developed to make sure we
reach high response rates and
transparency. In the Sarphati
Cohort we have two leading
principles in order to meet the
high standard on privacy & data
protection within the City of
Amsterdam.
1) we will obtain informed
parental consent of one legal
parent with parental
authority
2) we will only use anonymised
data, aggregated to the
appropriate level for scientific
research within the scope of
the Sarphati Amsterdam
research agenda
The Sarphati App is developed by the
Public Health Service of Amsterdam (GGD
Amsterdam)
Aim
Developing a comprehensive
and easy-to-use video informed
consent app that is accessible
for a diverse group of parents
by involving parents in the step
by step development of the
Sarphati App
Overall parents were positive about the demo version of the Sarphati App. Some parents mentioned their hesitation
towards using their personal DigiD to give consent, whereas others stated it felt familiar, confidential and more secure.
feedback:
• the app is well designed and for most parts easy to use
• the style of the app is clear and appealing
• the video is clear and appealing, but some found the visual and audible effects in the video too chaotic at times
• the length of the video is a bit too long
changes:
• by deleting a minor part of the animation we were able to enhance the flow, reduce the perceived length and add
some missing information while reducing the actual video length by 3 seconds
• some app functionalities were improved, such as the button placement and popup errors
Pilot demo version Sarphati App
storyboard
• test content and look & feel among a few parents
• feedback: clear information and appealing images
• changes: images to make them more identifiable and even more appealing
video
• sounding board YHC physicians & nurses
• field test shopping areas - 40 parents
• feedback: length video and some prefer to read more information
• changes: written information added in app
clickable dummy
• sounding board Parent and Child Team assistants
• focus group to test content and some usability aspects – 4 parents
• features: background information, video and screens of the app
• feedback: found the information clear and appealing
• changes: added information on our reason to use DigiD
demo version
• pilot to test full content and usability using think aloud method and interviews- 5 fathers and 25 mothers
• features:background information, video and full app functionalities
• feedback: length video, button placement, lack of popup errors, missing background information
• changes: enhanced flow video, added extra background information and improved app functionalities
Sarphati App
• features: video, detailed background information, governmental identification tool
• Android and iOS app available in 6 languages Dutch English Spanish Turkish French German •web version www.sarphati-app.nl
Testing stages