Patients as Partners is a quality improvement initiative of the British Columbia Ministry of Health (the Ministry) that aims to bring patient voice, choice, and representation to the forefront of healthcare through collaboration with patients, families, non-governmental organizations, funded partners, regional health authorities, and healthcare providers. A spectrum of patient engagement activities, including capacity building and self-management support, occur through partnerships at the individual patient and provider, community, and system levels. These activities ensure patient priorities are identified and embed a patient-centred care approach into provincial policies and projects. Multi-/interdisciplinary collaborations in the healthcare sector occur through participation in working groups, advisory committees, and engagement events. Ongoing improvements include enhancing measurement strategies and leveraging opportunities around gaps. The Ministry was honoured with the International Association of Public Participation Award as the 2016 Canadian Organization of the Year in recognition of improving healthcare through patient and public education.

Objectives. Nunavut is the most northerly jurisdiction in Canada of which 85% of inhabitants are Inuit. Although most infants are born healthy, Nunavut leads the country for adverse early child health outcomes such as infant mortality, rates of birth defects, prematurity and low birth weight. Public health and community efforts are needed to understand and improve outcomes. Methods. To inform these issues, a combined University of British Columbia/Nunavut Public Health Strategy effort has initiated a comprehensive maternal-child health surveillance system (from 16 weeks gestation to age 5). A diverse group of professional and lay stakeholders were brought together initially to determine local interest. Following this, a series of small working groups were held to decide on potential prenatal, perinatal and early child health variables, to be documented. Results. Over 100 Nunavut participants have now had some role in the development of the system which has been initiated. Pre-existing standard prenatal forms and well-child assessment forms have been modified to include "Nunavut specific" variables of nutrition, food and domestic security, exposures in pregnancy, birth defects, development, chronic diseases of childhood and paternal information. Conclusion. This comprehensive maternal-child health information system has been developed with the extensive input of health care providers and stakeholders, utilizing community and public health systems already in place. Careful assessment of local needs has contributed to database development, privacy protection, potential data utilization for health promotion and plans for dissemination of findings. It is hoped that this will be a user-friendly surveillance system, adaptable to other community and public health systems that will improve the understanding of Aboriginal maternal-child health determinants.

Background: Evidence-based health policy (EBHP) development is critical to the judicious use of public funds. EBHPs increase transparency, accountability, effectiveness, and efficiency of policies. Encouraging collaboration between researchers or knowledge producers and policy makers is important because both communities have distinct professional cultures, resulting in them working separately without understanding each other. Knowledge sharing is a complex process that requires understanding of cultural aspects that may reduce cultural differences and increase the use of common language. Health information technology (HIT) is a useful tool to increase knowledge translation, which may result in the transparent use of evidence and networking in developing EBHPs. Our vision is to leverage HIT tools for a better health system that includes digitalized, open source, evidence-based, and transparent ways for collaboration and development of robust mechanisms and for sharing of synthesized evidence with knowledge user-friendly forms. Objective: The aim of this study is to develop a conceptual framework on Knowledge translation and health Information Technology for Transparency (KhITT) in policy making and EBHPs (ie, the KhITT framework). The framework will be informed by the views of four key stakeholder groups (ie, policy makers, knowledge producers, HIT professionals, and the public) toward EBHP. The informants may also describe practices that demonstrate the EBHP development process and suggest technology platforms to enable this process. Methods: We propose an exploratory, descriptive qualitative study to take place in British Columbia, Canada, using in-depth semistructured interviews. To ensure data saturation and trustworthiness, we will use a nonprobability, purposive snowball sample of up to 15 eligible participants in each of the four stakeholder groups. We will analyze the data using content analysis. Results: The KhITT framework focuses on various stakeholders' perspectives to better understand their perceived needs and priorities in identifying issues with EBHP, in order to make informed recommendations. Ethics approval has been obtained by the harmonized Behavioural Research Ethics Board at the University of British Columbia. We anticipate that we will complete data collection and analysis by December 2020. Preliminary results will be published in summer 2021. Conclusions: Our ultimate goal of this study is to develop a conceptual framework and describe the technology platforms that would enable the EBHP process. We anticipate that our rigorous content analysis will be able to produce insights and themes

BACKGROUND Evidence-based health policy (EBHP) development is critical to the judicious use of public funds. EBHPs increase transparency, accountability, effectiveness and efficiency of policies. Encouraging collaboration between researchers/knowledge producers (KPs) and policy-makers (PMs) is important, because both communities have distinct professional cultures resulting in working separately without understanding each other. Knowledge sharing is a complex process that requires understanding of cultural aspects that may reduce cultural differences and increase use of common language. Health information technology (HIT) is a useful tool to increase knowledge translation (KT) that may result in transparent use of evidence and networking in developing EBHPs. Our vision is to leverage HIT tools for a better health system that includes digitalized, open source, evidence-based, and transparent ways for collaboration and development of robust mechanisms, and sharing synthesized evidence with knowledge-user friendly forms. OBJECTIVE The aim is to develop a conceptual framework on KT and HIT for transparency in policy-making process and EBHPs (the KhITT framework), which will be informed by the views of four key-stakeholder groups (i.e., PMs, KPs, HIT professionals, the public) toward EBHPs. The informants may also describe practices that demonstrate EBHP process and suggest technology platforms to enable this process. METHODS We propose an exploratory descriptive qualitative study in British Columbia, Canada using in-depth, semi-structured interviews. To ensure data saturation and trustworthiness, we will use a non-probability purposive, snowball sample of up to 15 eligible participants in each of four stakeholder groups. We will analyze the data using content analysis. Ethics approval has already obtained by the harmonized Behavioural Research Ethics Board at the University of British Columbia. RESULTS The KhITT framework focuses on various stakeholders’ perspectives including for better understanding their perceived needs and priorities in identifying issues with EBHP to make informed recommendations. Currently (September 2019), we are recruiting study participants. The anticipated completion date for data collection to be end of January 2020. We estimate the expected findings of this study to be published end of the year 2020. CONCLUSIONS Our ultimate goal of this study is to develop a conceptual framework and describe the technology platforms that would enable the EBHP process. We anticipate that our rigorous content analysis can produce insights and themes able to address our objectives, contribute to an in-depth understanding of the EBHP process within British Columbia, highlight all influential factors, explicitly disseminate and communicate the study results, identify issues with EBHP and provide informed recommendations to address them, and enhance efforts toward transparent EBHPs. CLINICALTRIAL N/A