Harmonizing data on correlates of sleep in children within and across neurodevelopmental disorders: lessons learned from an Ontario Brain Institute cross-program collaboration.

There is an increasing desire to study neurodevelopmental disorders (NDDs) together to understand commonalities to develop generic health promotion strategies and improve clinical treatment. Common data elements (CDEs) collected across studies involving children with NDDs afford an opportunity to answer clinically meaningful questions. We undertook a retrospective, secondary analysis of data pertaining to sleep in children with different NDDs collected through various research studies. The objective of this paper is to share lessons learned for data management, collation, and harmonization from a sleep study in children within and across NDDs from large, collaborative research networks in the Ontario Brain Institute (OBI). Three collaborative research networks contributed demographic data and data pertaining to sleep, internalizing symptoms, health-related quality of life, and severity of disorder for children with six different NDDs: autism spectrum disorder; attention deficit/hyperactivity disorder; obsessive compulsive disorder; intellectual disability; cerebral palsy; and epilepsy. Procedures for data harmonization, derivations, and merging were shared and examples pertaining to severity of disorder and sleep disturbances were described in detail. Important lessons emerged from data harmonizing procedures: prioritizing the collection of CDEs to ensure data completeness; ensuring unprocessed data are uploaded for harmonization in order to facilitate timely analytic procedures; the value of maintaining variable naming that is consistent with data dictionaries at time of project validation; and the value of regular meetings with the research networks to discuss and overcome challenges with data harmonization. Buy-in from all research networks involved at study inception and oversight from a centralized infrastructure (OBI) identified the importance of collaboration to collect CDEs and facilitate data harmonization to improve outcomes for children with NDDs.

An asthma action plan created by physician, educator and patient online collaboration with usability and visual design optimization.

BACKGROUND: Asthma action plans (AAPs), which decrease hospitalizations and improve symptom control, are recommended in guidelines, but are seldom delivered to patients. Existing AAPs have been developed by experts, without the inclusion of all stakeholders (such as patients with asthma) and without specifically addressing usability and visual design. OBJECTIVE: Our objective was to develop a more usable AAP by involving all stakeholders and considering design preferences. METHODS: We created a Wiki-based system for multiuser AAP development. Pulmonologists, primary care physicians, asthma educators and patients used the system to collaboratively compile a single AAP by making multiple online selections over 1 week. We combined common elements from 3 AAPs developed in this way into 1, optimized visual design features and tested face validity in focus groups. RESULTS: A total of 41 participants averaged 646 selections/week over a login-time of 28.8 h/week. Of 35 participants, 28 (80%) were satisfied with the final AAP and 32 (91%) perceived that they would be able to use it. The plans created by the 3 groups were very similar, with a unanimous or majority agreement in the handling of 100/110 (91%) AAP options. CONCLUSIONS: Inclusion of multiple stakeholders and focus on design preferences predict enhanced usability and uptake of medical tools. The validity of our AAP is further supported by the similarity between the AAPs created by each group, user engagement and satisfaction with the plan and agreement with existing validity criteria proposed by experts. This AAP can be implemented in care with a concurrent measurement of uptake and health impact.

WikiBuild: a new online collaboration process for multistakeholder tool development and consensus building.

BACKGROUND: Production of media such as patient education tools requires methods that can integrate multiple stakeholder perspectives. Existing consensus techniques are poorly suited to design of visual media, can be expensive and logistically demanding, and are subject to caveats arising from group dynamics such as participant hierarchies. OBJECTIVE: Our objective was to develop a method that enables multistakeholder tool building while averting these difficulties. METHODS: We developed a wiki-inspired method and tested this through the collaborative design of an asthma action plan (AAP). In the development stage, we developed the Web-based tool by (1) establishing AAP content and format options, (2) building a Web-based application capable of representing each content and format permutation, (3) testing this tool among stakeholders, and (4) revising this tool based on stakeholder feedback. In the wiki stage, groups of participants used the revised tool in three separate 1-week "wiki" periods during which each group collaboratively authored an AAP by making multiple online selections. RESULTS: In the development stage, we recruited 16 participants (9/16 male) (4 pulmonologists, 4 primary care physicians, 3 certified asthma educators, and 5 patients) for system testing. The mean System Usability Scale (SUS) score for the tool used in testing was 72.2 (SD 10.2). In the wiki stage, we recruited 41 participants (15/41 male) (9 pulmonologists, 6 primary care physicians, 5 certified asthma educators, and 21 patients) from diverse locations. The mean SUS score for the revised tool was 75.9 (SD 19.6). Users made 872, 466, and 599 successful changes to the AAP in weeks 1, 2, and 3, respectively. The site was used actively for a mean of 32.0 hours per week, of which 3.1 hours per week (9.7%) constituted synchronous multiuser use (2-4 users at the same time). Participants averaged 23 (SD 33) minutes of login time and made 7.7 (SD 15) changes to the AAP per day. Among participants, 28/35 (80%) were satisfied with the final AAP, and only 3/34 (9%) perceived interstakeholder group hierarchies. CONCLUSION: Use of a wiki-inspired method allowed for effective collaborative design of content and format aspects of an AAP while minimizing logistical requirements, maximizing geographical representation, and mitigating hierarchical group dynamics. Our method faced unique software and hardware challenges, and raises certain questions regarding its effect on group functioning. Potential uses of our method are broad, and further studies are required.