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      <title>Capacity Pediatric Diabetes Registry - Use Case Development by ugonna ofonagoro</title>
      <link>https://padlet.com/ugonnaofonagoro/xp2542y6qbwjh57n</link>
      <description>Welcome to our Capacity Pediatric Diabetes Registry Padlet! This space is dedicated to showcasing the diverse range of functions and features envisioned by our Knowledge Exchange Event participants.
During our Knowledge Exchange Event, participants brought forward visionary ideas on how bests the registry could be used to impact pediatric diabetes care. These ideas were meticulously distilled into concrete functions and features, which were then organized into three pivotal themes: Research, Quality Improvement, and Patient-Driven Initiatives.
Explore this Padlet to gain a comprehensive understanding of the functions and features within each theme. This padlet will help with context during the collaborative activities of our next PABmeeting 

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      <language>en-us</language>
      <pubDate>2023-10-16 18:05:08 UTC</pubDate>
      <lastBuildDate>2023-10-16 18:39:31 UTC</lastBuildDate>
      <webMaster>hello@padlet.com</webMaster>
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      <item>
         <title>Research Functions/ Features </title>
         <author>ugonnaofonagoro</author>
         <link>https://padlet.com/ugonnaofonagoro/xp2542y6qbwjh57n/wish/2749369926</link>
         <description><![CDATA[<div><strong>Epidemiological Research</strong></div><div>Registry should contain information on treatment of comorbidities and complications of diabetes (Prevalence, incidence, trends, geographic location, demographics etc.)</div><div>Indicators of disease that should be included are gender, sex, ethnicity, nationality, socioeconomic status, etc.</div><div><strong>Research on Management of Diabetes</strong></div><div>Use the data collected in the registry to further the research on controlling blood sugar without the usage of injections</div><div><strong>Prevention and Early Intervention Methods</strong></div><div>Develop models using the data in the registry to highlight high risk populations or groups based on their demographics, health history, lifestyle and behaviours</div><div>These models will help in making diagnosis of diabetes more accurate and help address early miss-diagnosis of diabetes</div><div><strong>Mental Health Research</strong></div><div>Statistics and tracking of mental health and diabetes</div><div>See which geographic areas are most likely to have people with diabetes suffering from mental health conditions as a comorbidity, and identify how these at risk populations can be supported</div><div><strong>Long-Term outcomes &amp; Monitoring Disease Progression</strong></div><div>The registry can help with studying long term outcomes of paediatric patients such as quality of life, education, etc.</div><div>Use data to create a timeline on progression of diabetes and how it changes with age in the paediatric population</div><div>Use statistical charts and graphs showing differences and disparities in diabetes diagnosis and development in relation to others in the country</div><div>Provide policies and programs that support their well being as they grow older</div><div>Community services and programs, grants, rebates offered by the government, important contacts and allied healthcare professionals</div><div><strong>Research and Organization Collaboration</strong></div><div>Give access to other registries and organizations across Canada to analyze, interpret, and share ideas, data, recommendations and research</div><div><strong>Marketing the Registry to the Public</strong></div><div>This registry should be widely available and accessible to all Canadians as a resource for anyone regardless of their socioeconomic background or geographic location</div><div>Support of public health departments, both provincial and national, to market the registry with advertisements (print, radio, tv) and informing clinicians both in hospital and clinic settings that this resource is readily available for those interested in learning more, those with family members that have diabetes, and patients that have diabetes</div><div><strong>Access to Pharmaceuticals, Technology, and Therapeutics. (THIS COULD BE A PLATFORM FUNDING OPPORTUNITY)</strong></div><div>Curate information on the latest diabetes-related technologies, including insulin pumps, continuous glucose monitors, and other therapeutics, along with guidance on access and funding options</div><div>Provide information on ongoing research studies, clinical trials, and grants related to pediatric diabetes care, which may offer access to cutting-edge treatments and technologies.</div><div>Establish partnerships with pharmaceutical companies and technology providers to offer discounted or subsidized access to necessary medications and technologies</div><div>Create a tool that helps families navigate pharmaceutical assistance programs, providing information on eligibility, application processes, and available resources.</div><div><strong>Aggregated data</strong></div><div>A feature to generate reports summarizing the collected financial data. These reports could be useful for presentations to potential funders or stakeholders.</div><div>The aggregated data could be used for advocacy purposes, including securing more funding for pediatric diabetes research, support progra</div><div><strong>Resources Recommendations</strong></div><div>Enable users to compare the availability of resources between medical care settings and schools.</div><div>Provide resources and training materials for healthcare providers to improve teaching and support for patients initiating insulin therapy.</div><div>Develop a toolkit or program to enhance diabetes education and support within school settings, including resources for educators and students. (Leverage existing programs)</div>]]></description>
         <enclosure url="" />
         <pubDate>2023-10-16 18:20:31 UTC</pubDate>
         <guid>https://padlet.com/ugonnaofonagoro/xp2542y6qbwjh57n/wish/2749369926</guid>
      </item>
      <item>
         <title>Quality Improvement </title>
         <author>ugonnaofonagoro</author>
         <link>https://padlet.com/ugonnaofonagoro/xp2542y6qbwjh57n/wish/2749372540</link>
         <description><![CDATA[<div><strong>Assessing current practices and Treatment Effectiveness</strong></div><div>Use data from registry to evaluate current protocols and technologies to see if they are the best practice for managing diabetes</div><div><strong>Collaborate with Community</strong></div><div>Involve family members of diabetic patients to further develop and improve the state of the registry as they have extensive experience in the healthcare system and with managing the disease as an outsider</div><div><strong>Marketing the Registry for the Public</strong></div><div>This registry should be widely available and accessible to all Canadians as a resource for anyone regardless of their socioeconomic background or geographic location</div><div>Support of public health departments, both provincial and national, to market the registry with advertisements (print, radio, tv) and informing clinicians both in hospital and clinic settings that this resource is readily available for those interested in learning more, those with family members that have diabetes, and patients that have diabetes</div><div><strong>Access Barriers Identification</strong></div><div>Use the accessibility assessment tool to pinpoint specific obstacles preventing certain demographic groups from accessing care and support.</div><div><strong>Access Analysis by Demographics</strong></div><div>Analyze the demographic data to identify any disparities in access based on age, gender, race, ethnic background or location.</div><div>Compare the utilization patterns of individuals accessing care and resources with those who are not.</div><div>Evaluate access disparities based on geographic location to target regions with limited access and limited technology</div><div><strong>Ensure privacy for all content and users of database</strong></div><div>Create secure tools (Passwords, authentication, government secure site) to give users and those registered in the registry peace of mind in using and accessing</div><div><strong>Identify Disparities</strong></div><div>Highlight disparities and inequities related to the diagnosis and management of diabetes such as the outcome of intervention vs no intervention, socioeconomic status, technology, family type, parenting effects, ethnicity, and more</div><div><strong>Engagement and Feedback</strong></div><div>Encourage users to share their experiences and challenges related to the financial aspects of diabetes care. Consider incorporating a feedback mechanism to continuously improve the data collection process. (Possible wit AI tech)</div><div><strong>Clinical Guideline Impact</strong></div><div>evaluate the impact of existing clinical guidelines on technology access and utilization</div><div><strong>Comparative Analysis</strong></div><div>Compare the health outcomes of children who receive nursing support services and designated funding with those who do not.</div><div>Cost-Benefit Analysis</div><div>Evaluate the cost-effectiveness of providing nursing support services and designated funding in terms of improved health outcomes and reduced hospitalizations.</div><div><strong>Health Outcomes&nbsp;</strong></div><div>Analyze the correlation between nursing support services, funding allocation, and A1c levels over time.</div><div>Determine if children with nursing support and funding are more likely to participate in educational programs, leading to improved self-management.</div><div><strong>Access to Technology</strong></div><div>Assess if children receiving nursing support services and funding have better access to diabetes-related technology.</div><div><strong>Access Analysis by Demographics</strong></div><div>Analyze the demographic data to identify any disparities in access based on age, gender, race, ethnic background or location.</div><div>Compare the utilization patterns of individuals accessing care and resources with those who are not.</div><div>Evaluate access disparities based on geographic location to target regions with limited access.</div><div><strong>Barriers Identification Tools</strong></div><div>Survey or assessment tool to identify specific barriers preventing some individuals from</div><div>used to pinpoint specific obstacles preventing some individuals from accessing care.</div><div><strong>Disparities Analysis by Demographics</strong></div><div>Analyze he data to identify disparities in access, resources, and support based on age, cultural background, racial identity, and location.</div><div><strong>Access Barriers Identification</strong></div><div>Use the accessibility assessment tool to pinpoint specific obstacles preventing certain demographic groups from accessing care and support.</div><div><strong>Climate and Environmental Impact</strong></div><div>Analyze data related to climate and environmental factors to understand their influence on diabetes care</div><div><strong>Back end data collection </strong>.<br><br></div>]]></description>
         <enclosure url="" />
         <pubDate>2023-10-16 18:22:15 UTC</pubDate>
         <guid>https://padlet.com/ugonnaofonagoro/xp2542y6qbwjh57n/wish/2749372540</guid>
      </item>
      <item>
         <title>Patient Driven</title>
         <author>ugonnaofonagoro</author>
         <link>https://padlet.com/ugonnaofonagoro/xp2542y6qbwjh57n/wish/2749399261</link>
         <description><![CDATA[<div><strong>Culturally Sensitive resources for Patients and Families</strong></div><div>Information on management, prevention, and accessing care for patients living with diabetes and their families</div><div>Culturally sensitive resources that are respectful and understanding of cultural differences in the population</div><div><strong>Different languages available to access registry</strong></div><div>Have resources and educational material available in various languages</div><div><strong>Health navigator resources</strong></div><div>Provide health navigators or members of same community or culture (Arab, South Asian, etc.) to those requesting or in need to access diabetes care services in their community (Clinics, dieticians)</div><div><strong>Resources on Mental Health and living with diabetes</strong></div><div>Have information in registry on the psychosocial and psychological experience of patients living with diabetes</div><div><strong>Collaborate with Community</strong></div><div>Involve family members of diabetic patients to further develop and improve the state of the registry as they have extensive experience in the healthcare system and with managing the disease as an outsider</div><div><strong>Educational Resources</strong></div><div>Provide educational information on best diabetes management practices such as nutrition, pump training, and other important topics</div><div>Can use videos, lectures, infographics, blog-style posts, and articles as educational material for these deliverables</div><div><strong>Community and Peer Support Groups</strong></div><div>Develop support groups in the form of a forum, posting board, or form of social media where people with diabetes and their families can ask questions, post their ideas or thoughts, or share any grievances or difficulties they have</div><div>These support groups can act as a collaborative field for finding new ideas and solutions for people struggling with similar problems, and also act as a mental health resource for those that need someone to speak to that understands their difficulties with diabetes as a patient or caregiver</div><div><strong>Easily Accessible and Available Educational Resources</strong></div><div>Have a friendly UI and limited use of medical and scientific jargon for the public to be able to easily access and understand information on what the disease is, what intervention and prevention methods are present, and what they can do to assist (Donations, advocacy, support groups, etc.)</div><div><strong>Geographic Based Management Resources</strong></div><div>Contain a directory of local clinics, allied health professionals, and numbers to contact for all Canadians based on their geographic location</div><div>Provide resources on who to contact and where to go based on diagnosis or relation to family member</div><div><strong>Mental Health and Support Services for Clinicians</strong></div><div>Forum and posting boards for clinicians and allied healthcare workers to express their grievances and difficulties with diabetes management</div><div>Share ideas on how they can improve care that will benefit both the patient and reduce stress and workload on themselves</div><div>Provide mental health resources and material for clinicians]</div><div><strong>Individualized Resources and Assistance</strong></div><div>Usage of survey and inputted data from patient and/or caregiver to provide individualized and specific material that is tailored to their respective goals and current medical condition</div><div>Create several educational and resource packets or materials that can each be catered to a specific subset of people based on the survey and data responses</div><div><strong>Educating Schools and Daycares</strong></div><div>Provide material and educational resources that teachers and school boards can access and implement in their classrooms in regards to diabetes</div><div>Eg. Diabetes appropriate snacks, emergency scenario preparation, educating students on diabetes to reduce stigma and isolation of children with diabetes in the classroom and school setting</div><div><strong>Transition Planning</strong></div><div>The system guides pediatric providers and patients in creating a personalized transition plan, including setting milestones and identifying resources.</div><div>Provides access to a curated library of resources tailored for young adults transitioning into adult diabetes care.</div><div>Connects patients with local adult diabetes support groups, specialists, and other relevant resources.</div><div><strong>Resource Portal Ideas</strong></div><div>Develop an online hub that provides centralized access to standardized resources, guidelines, and best practices for pediatric diabetes care across Canada.</div><div>Create a tool that allows users to input their location and specific needs, and then provides tailored information on available support services in their area.</div><div><strong>Parent-School Communication Platform/Student Resources</strong></div><div>Develop a comprehensive toolkit for schools that includes training materials, protocols, and resources for managing diabetes in a school setting.</div><div>Create a portal specifically for school nurses to access real-time information about students with diabetes, their care plans, and emergency protocols.</div><div>Provide age-appropriate materials and resources for students to learn about self-care and advocacy for their diabetes needs in a school environment.</div><div>Establish a secure platform for parents and schools to communicate and coordinate care plans, appointments, and emergencies.</div><div><strong>Educational Resources</strong></div><div>Provide resources and articles on the financial aspects of managing pediatric diabetes. Offer tips on cost-saving measures and information on available financial assistance programs.</div>]]></description>
         <enclosure url="" />
         <pubDate>2023-10-16 18:39:31 UTC</pubDate>
         <guid>https://padlet.com/ugonnaofonagoro/xp2542y6qbwjh57n/wish/2749399261</guid>
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