{"id":398,"date":"2016-06-30T15:53:16","date_gmt":"2016-06-30T15:53:16","guid":{"rendered":"https:\/\/lab.research.sickkids.ca\/dimaras\/?page_id=398"},"modified":"2022-10-20T15:59:21","modified_gmt":"2022-10-20T15:59:21","slug":"engagement","status":"publish","type":"page","link":"https:\/\/lab.research.sickkids.ca\/dimaras\/research\/engagement\/","title":{"rendered":"Patient Engagement"},"content":{"rendered":"

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Current Research<\/strong><\/h2><\/span>
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Introduction<\/strong><\/h4>\n

Canada’s\u00a0Strategy for Patient-Oriented Research<\/a><\/span> promotes engagement of patients \u2013 including survivors and informal caregivers \u2013 throughout the research process.<\/p>\n

Knowledge produced from research currently\u00a0moves too\u00a0slowly<\/a><\/span>\u00a0from lab to bedside.\u00a0\u00a0 By including patients in the\u00a0research process, we can change this. Patients can contribute by doing\u00a0 things like suggesting new\u00a0research questions, joining research teams,\u00a0and\u00a0sharing exciting research results with\u00a0others.<\/p>\n

Ultimately, patient engagement in research will help create knowledge that is more likely to be relevant, adopted, and implemented, and lead to improved health outcomes.<\/strong><\/p>\n

In 2015, we started studying patient engagement in research among the retinoblastoma community. Since then, we have initiated efforts to foster patient engagement in research\u00a0beyond retinoblastoma including a current study underway to examine Patient Reported Outcome Measures for paediatric ophthalmology patients.<\/p>\n

Patient Engagement in\u00a0<\/strong>Retinoblastoma\u00a0<\/strong>Research:<\/strong><\/h4>\n

In 2016, we\u00a0established a national retinoblastoma patient engagement strategy to:<\/p>\n

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  1. Share<\/strong> research<\/strong> results with people affected by retinoblastoma (e.g., survivor, the immediate family of someone diagnosed with retinoblastoma etc.);<\/li>\n
  2. Include<\/strong> a large diverse<\/strong> group of people affected by retinoblastoma in research; and<\/li>\n
  3. Promote<\/strong> research that is created<\/strong> and led<\/strong> by people affected by retinoblastoma.<\/li>\n<\/ol>\n

    This strategy has resulted in the:<\/p>\n

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    • Retinoblastoma Research Community: People in the Canadian Retinoblastoma Community who are interested in research. To formally join the\u00a0<\/span>community, individuals are encouraged to sign up online (below). The Canadian Retinoblastoma \u00a0<\/span>Research Community was formerly known as the Canadian Retinoblastoma Research Registry.<\/span><\/li>\n
    • Canadian Retinoblastoma Research Advisory Board: Members of the Canadian Retinoblastoma Research Community who participate in patient partnered research and related activities and events. Members of CRRAB \u00a0draw from personal experience to promote <\/span>patient partnership in research and encourage sign-up to the Canadian <\/span>Retinoblastoma Research Community<\/span>. <\/span><\/span><\/li>\n<\/ul>\n

      Please\u00a0click the links below to find out more!<\/p>\n

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      <\/p>\n\t\t\t\n\t\t\t\t\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\"Slide\"\nJoin the Canadian Retinoblastoma Research Community \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer>Information for Researchers Wishing to Partner with Patients \n\t\t\t\t\t\t\t<\/rs-layer>Visit Our Patient Engagement Website \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer>\t\t\t\t\t<\/rs-slide>\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\"\"\nJoin the Canadian Retinoblastoma Research Community \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer>Information for Researchers Wishing to Partner with Patients \n\t\t\t\t\t\t\t<\/rs-layer>Visit Our Patient Engagement Website \n\t\t\t\t\t\t\t<\/rs-layer> \n\t\t\t\t\t\t\t<\/rs-layer>\t\t\t\t\t<\/rs-slide>\n\t\t\t\t\t<\/rs-slides>\n\t\t\t\t<\/rs-module>\n\t\t\t\t