BackgroundThe importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature.MethodsA scoping literature review was conducted using established methodology. Four research databases and one large grey literature database were searched, in addition to hand‐searching relevant journals. Articles meeting specific inclusion criteria were retrieved and data extracted. Common characteristics were identified and summarized.ResultsTen articles were included in the review, assessed as having low‐to‐moderate quality. Parent co‐researchers were engaged in the planning, design, data collection, analysis and dissemination aspects of research. Structural enablers included reimbursement and childcare. Benefits of engaging parent co‐researchers included enhancing the relevance of research to the target population, maximizing research participation and parent empowerment. Challenges included resource usage, wide‐ranging experiences, lack of role clarity and power differences between parent co‐researchers and researchers. Evaluation of parent co‐researcher engagement was heterogeneous and lacked rigour.ConclusionsA robust evidence base is currently lacking in how to effectively engage parent co‐researchers. However, the review offers some insights into specific components that may form the basis of future research to inform the development of best practice guidelines.

BackgroundHealth care portals have the potential to provide consumers with timely, transparent access to health care information and engage them in the care process.ObjectiveThe objective was to examine the use, utility, and impact on engagement in care and caregiver-provider communication of a client/family portal providing access to electronic health records (EHRs) and secure, 2-way e-messaging with care providers.MethodsWe conducted a prospective, mixed-methods study involving collection of caregivers’ portal usage information over a 14-month period (from portal introduction in January 2015 to the end of the study period in March 2016), a Web-based survey for caregivers administered after a minimum of 2 months’ exposure to the portal and repeated 2 months later, and focus groups or individual interviews held with caregivers and service providers at the same points in time. The survey assessed caregivers’ perceptions of the utility of and satisfaction with the EHR and e-messaging, and the portal’s impact on client engagement and perceptions of caregiver-provider communication. A total of 18 caregivers (parents) completed surveys and 6 also took part in focus groups or interviews. In addition, 5 service providers from different disciplines took part in focus groups or interviews.ResultsAlthough usage patterns varied, the typical pattern was a steady level of use (2.5 times a month over an average of 9 months), which is higher than typically reported use. The portal pages most frequently accessed were the home page, health record main page, appointment main page, and reports main page. The Web-based survey captured caregivers’ perceptions of usefulness of and satisfaction with the EHR and portal messaging, as well as the portal’s impact on their engagement in care and perceptions of caregiver-provider communication. The surveys indicated a moderate degree of utility of and satisfaction with the portal features, and a low but emerging impact on engagement in care and caregiver-provider communication (survey scales measuring these outcomes displayed excellent internal consistency, with Cronbach alpha ranging from .89 to .95). Qualitative themes from focus groups and interviews supported and extended the survey findings. Caregivers and service providers saw appreciable information benefits and provided recommendations to increase portal use and utility. Caregivers focused on the scope of organizational adoption of the portal system and indicated their hopes for the future of the portal, whereas service providers were concerned about how to best manage their investment of time and effort in preparing client-friendly reports and messaging clients via the portal.ConclusionsOverall, the findings show the promise of the portal and the need for ongoing evaluation to show the portal’s ultimate potential in enhancing engagement in care and communication with care providers.

Web-based portals and electronic health records are making it easier for clients and families to access health information. This improved transparency and access to information has the potential to promote activation and improve outcomes, but to realize these benefits, the information needs to be valuable, meaningful, and understandable. Engagement of the end users in the planning and implementation will ensure that the product meets the needs of the consumers. The purpose of this case study is to describe the client and family engagement strategies that were employed to support the process of planning and implementing an online consumer health portal at a pediatric rehabilitation hospital to support the successful launch of this new information-sharing technology platform.

It is our hope that, by sharing our framework other research institutions can learn from our experience and develop their own research patient/client/family engagement programs. Implications for rehabilitation Family engagement in rehabilitation research •Rehabilitation research is crucial to the development and improvement of rehabilitative care. •The relevance, appropriateness, and accountability of research to patients, clients and families could be improved. •Engaging clients and families as partners in all aspects of the research process is one way to address this problem. •In this paper, we describe a framework for engaging clients and families in research at the organizational level.

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