The Sleep/Wake-Behaviour-App (SWAPP) utilizes modern digital technologies for data collection, allowing end-users to submit data in real-time, and has become the backbone of a clinical data registry. This app is unique and differs from currently available commercial products because it (a) has been developed in collaboration with parent advocacy groups, non-governmental organizations and researchers, (b) allows for video clip recordings, e.g. of disruptive behaviours, for which we are providing automated analysis software in 2018, and (c) may become the foundation for personalized personal electronic medical records owned by patients/caregivers.

Since the site visit by The Siesta Group (a potential international commercialization partner) in the fall of 2017, we have developed an advanced understanding and approach to the SWAPP concept: In order for the SWAPP to be used by healthcare providers, the app has to fulfill specific criteria (21-CFR-Part-11-norm) and any work that is done to adapt the SWAPP as a medical app needs to be reproducible and documented (using an audit process). While any commercial company can develop such a medical app, the content, interface and back-end of the SWAPP affects the effectiveness of interfaces and users’ engagement and motivation; thus the content of the app has to be developed in close collaboration with a trans-disciplinary research team and patient partners, who can ensure the app meets the needs of patients and healthcare providers.

The current SWAPP Research Consortium fulfills the requirements for this high-quality transdisciplinary research team, and is supported by a number of community based stakeholders.

Project Leads: Osman Ipsiroglu, Caylee Raber, Chris Shaw

Project Partners: Emily Carr University of Art + Design, Simon Fraser University

Clinical Team: O Ipsiroglu & N. Beyzaei (UBC)

Design Team: Caylee Raber, Markus Schilling (ECUAD)

Branding Team: Maria Goncherova & class developed various branding scenarios and framed communications strategy

Technical/Implementation Teams: Christopher Shaw (SIAT, SFU)

Evaluation Team: Dr. Faranak Farzan (SFU)

Research Assistant: Mai Berger + Nadia Beyzaei (UBC); Nina Chen + Banban Zhao + Danni Peng (ECUAD); Ankit Gupta + Tim Heng (SFU)

Funding: Kids Brain Health Network - Small Project 2013 Competition & BC Gov. App Project 2014; Telus Community Grant/Down Syndrome Research Foundation 2015 

Acknowledgements: Down Syndrome Research Foundation, Rare Disease Foundation, Parent Advisory Board of the Can-FASD Research Network

Publications/Awards: 2017: Human Computer Interaction at University of British Columbia, Designing for People: Best Poster Award, Poster #6 Project Title: SWAPP (Sleep/Wake-Behaviours App) Authors and affiliation: Project development: Emily Carr University Health Design Lab in collaboration with BC Children’s Hospital Research Institute and Simon Fraser University

SWAPP 2.0

The overhaul of the SWAPP concept and development was started at the Apps4Kids Hackathon (June 12-19, 2015; mentored by NeuroDevNet). The Hackathon provided the app-team with a more hands-on and foundational approach to application development than previous, which allowed tailoring the application to the needs of the project and the target populations. The technical part of the report has been created by Mr. Luay Kawasme. Mr. Kawasme attended the Hackathon together with Ms. Sue Dyson (both at that time as Telus employers) as volunteer technical mentors. Mr. Kawasme stayed with the clinical team in order to guide and mentor us given the missing technical expertise. 

The clinical team came to the realization that the app has important implications as a bidirectional communication tool that should be created using a participatory research concept. Partners in this endeavor became Ms. Stephanie Stevenson (BC Pediatric Society) representing the voice of health care professionals, Ms. Pat Hanbury and Ms. Dawn McKenna (Down Syndrome Research Foundation) representing the voice of community based partner, and Drs. Oliviero Bruni, Cathy Hill, Rosalia Silvestri, and Art Walters, as well as Ms. Sue McCabe (members of the International Restless Legs Syndrome Study Group) as international peers investigating RLS-related discomfort and (growing) pain in children with insomnia. Under the guidance of these peers the assessment concept has been solidified and assessment forms designed by Ms. Nadia Beyzaei. The evaluation project of the SWAPP 2.0 was led by Ms. Mai Berger in collaboration with Dr. Sheila Marshall at Vancouver Technical High School and parents, participating in Sleep & Disruptive Daytime Behaviours Project at the Summer School of the DSRF.

Project Lead: Osman Ipsiroglu

Project Partners: Dr. Cristian Grecu (ECE, UBC), Dr. Andre Ivanov (ECE, UBC) 

Technical/Design Kick-Off at Hackathon 2015: G McAllister (lead) & M Berger (organization). and all Research Assistants

Research Assistant: Mai Berger (organization), Graham McAllister (Hackathon), Nadia Beyzaei (lead in design), Patricia Roth, Mackenzie Campbell, Melvin Chan

Funding: Strategic Funding Initiative of NeuroDevNet (later on Kids Brain Health Network) 

Acknowledgements: Mr. Luay Kawasme & Ms. Sue Dyson (Mentors from Telus mentored project development at Hackathon);  BC Paediatric Society and Down Syndrome Research Foundation

SWAPP 1.0

The development of the SWAPP 1.0 was conducted by Shift Health Paradigms and integrated the BEARS survey (developed by Dr. J. Owens, Boston), which was developed further in Vancouver by our clinical team (Van-Polar-BEARS), explored information about medication effects and adverse drug reactions (concept: Dr. D. Elbe, Vancouver) and the Family Ecology assessment concept (developed by Dr. Joe Lucyshyn, Vancouver). 

The Strategic Initiative Funding project had three overall objectives: (1) To develop the preliminary SWAPP that will (a) support caregivers and physicians in the assessment of sleep problems as a possible cause of challenging/disruptive daytime behaviours in children and youth with neurodevelopmental conditions, which are frequently under-diagnosed and missed (b) monitor medications. (2) To test the effectiveness of the SWAPP by assessing its applicability to everyday practice in British Columbia (testing to occur in Downtown Eastside, Vancouver; Lower Mainland, Langley/Surrey; and Interior, Kamloops). (3) To support knowledge exchange regarding best-practice treatment options for children with neurodevelopmental conditions and challenging/disruptive sleep/wake behaviours sleep problems by creating a shared communication forum for health care professionals at various tier-service levels in British Columbia to maximize the spread of research and knowledge.

The feasibility of the SWAPP 1.0 was tested in the Interior-Cluster, Kamloops, by the Clinical Team. Ms. Kirsten Graham (SFU) evaluated the impact of the clinical assessment of the Kamloops outreach and identified the barriers, which would hinder professionals to follow-up on therapeutic interventions. This work was mentored by professionals of the Kamloops Cluster (lead by Dr. Allyson Davey) and BC Pediatrc Society (Dr. Aven Poynter & Ms. Stephanie Stevenson). During this time, the three BC-Community-Clusters were developed: Kamloops, Interior; Downtown Eastside, Vancouver; and Lower Mainland, Langley/Surrey. 

Project Lead: Osman Ipsiroglu

Project Partners in Development: Dr. Dean Elbe (BC Children’s Hospital),

Project Partners in Network Development: Ms. Kirsten Graham (lead; Children’s Sleep Network; SFU), Dr. Allyson Davey (Cluster Lead – Interior, Kamloops), Dr. Christine Loock (Cluster Lead – Downtown Eastside), Ms. Dawn McKenna (DSRF), Dr. Aven Poynter (Cluster Lead – Lower Mainland, Langley/Surrey) and Ms. Stephanie Stevenson (BC Pediatric Society); Dr. Sheik Hosenbocus (Psychiatrist; Kamloops), Dr. Chris Cameron (Pharmacist, Kamloops), Dr. Rod Densmore (Family Doctor in Salmon Arm).

Research Assistant: Mai Berger, Graham McAllister, Kelsey Timler, Duncan Wong

Funding: $35,000 (BC Children's Hospital Foundation); $35,000 (Strategic Initiative Award, NeuroDevNet) 

Acknowledgements: 

Publications/Awards: Masters Thesis (Graham, K.) & BCCH-TRU Functional Sleep-/Wake Assessment for Children with Neurodevelopmental Conditions: Kamloops Cluster Evaluation Report